I feel like I'm running a fever alot. Achy legs and bones in my legs kill me. Upper back achy. Bloated, creepy crawlies, feet and hand pain. Neck pain, wrist pain. I also have osteoarthritis all my fingers are knotted. Hips hurt. My fingers hurt everyday and the bottoms of my feet.
I hate the feeling of running a fever! I feel the way you described when it rains or any big weather changes for that matter. Everything hurts. It feels deep in my bones.
I forgot about this one. Smells are a big thing with me. I get nauseous very easily. I smell things nobody around me can smell. Lol Dizzy spells a lot. I take motion sickness medicine when I’m feeling this way and it helps.
You were an incredible communicator of some of the major problems I had with Fibromyalgia. I really hated to disappoint so many people by being unreliable. I had Fibromyalgia for about 8 years and some medications helped me be able to work. However my company switched my hours to the late night shift by myself in a place that can get critical fast. This switch caused such stress that my brain fog just took over. My husband and I agreed it was time to retire. I was 62. I remember many Sundays I would shower, fix my hair and then get right back in bed exhausted. So many people just can imagine or believe that you are not faking or lazy. I pretty much became a hermit. Please be careful with medications! I just kept adding strong addictive meds until I almost went crazy! With help from a new doctor and my daughter I was able to eliminate many overpowering drugs. My body and mind are much better at 70 years old. I now am gentle with myself and gradually rendering society. May God bless anyone with this painful, depressing,mind stealing and heartbreaking syndrome.
Thank you for sharing your personal experience with fibromyalgia. You have faced so many challenges and had to make tough decisions regarding your work and lifestyle due to the impact of this condition. It's unfortunate that many people struggle to understand the reality of fibromyalgia and may doubt its debilitating effects. Being cautious with medications is a very important point you made. Finding the right balance and working closely with healthcare professionals is essential to manage symptoms effectively without relying solely on overpowering drugs. It's inspiring to hear that you've made progress in this regard and that both your body and mind have improved as a result. Living with fibromyalgia is a painful and isolating experience, and it's important to be gentle with yourself and prioritize your well-being. Your journey and resilience serve as a testament to the strength and determination required to navigate this syndrome. May you continue to find healing and support as you gradually reintegrate into society. Sending you warm wishes, and may you be blessed with better days ahead. 🙏
Hi barbbaily, you said had fibro, so are you all better now? What did new doctor do to help with pain? I am 65 and yes pain has gotten worse over the last 30 years. In the beginning it was just a bad week like once a month no big deal. Nowadays I can't remember my last good day. I have fibro and Lyme disease plus gastric issues so if it isn't one thing it is another. And hate disappointing people but they have dropped me like a hot potato. She is always sick why bother to ask, I get it but it hurts. Wish for someone just to sit with me and watch a movie. Quit Drinking that is another good way to become a hermit. I really wish I could find someone to go to town and do my grocery shopping. Such a long drive to town, I should move to town I know. But how ? takes energy to sell a house pack a house, and find a new house. Need a handyman too. my house is falling apart. I pay but seems nobody wants to do handyman jobs. I just have to take it all one day at a time. Depressed due to pain, was not depressed before pain. how do you get a doctor to understand that small detail?
I am going to be 60 in the fall 🍂🍁🍂 it is my favorite time of year I make it my happy place even if I'm feeling like a hot mess! But I'm also getting to the point in my age that I'm feeling too old to keep doing this it's been since 05 ☹️ I also have Parkinson's RA Sjogren's and Lewy Body Dementia (think Robin Williams) My rheumatologist has me doing PT and besides daily Bible reading I've started counseling for learning how to do coping strategies aging is different on the brain 🧠 I find and I stress over my house falling apart too I live in a small town where nobody wants to do personal care in home service Maybe my comment might help someone I don't know but there is hope we are never alone 🙏🥰 just keep swimming 🐟
This might sound morbid but I know that I have a limited time before it takes everything off me and leaves me a constant ball of pain one day. If it gets to that I would seriously look at calling the game. There are a couple of states in Australia that give you an option to end your life with dignity if you are in that position. But that’s going to be my choice at the time, others would think differently but that’s why we are human
@@geoffgunn9673I completely understand, but please don’t do that. First of all, it is a grave sin before God, because he created you and is the only one that should take your life. Secondly, it could keep you out of heaven. I don’t know if you’re a believer, but cling to Jesus, and pray. There is a reason we have this. You can offer your sufferings up to God, untied with the Cross of Christ, to help others, like a prayer. Jesus didn’t die for nothing, but to save us from hell. It’s also a very selfish act, in that it hurts the people that love you. Just recently, my 23 year old son came to me and told me how I had said, when he moved out, that I had nothing left to live for and might as well get it over with. It really upset him greatly. It’ s been 2 years since he moved out and he was crying telling me this. I said it stupidly when I was on prednisone, which makes you crazy, and my pain was thru the roof. I need to be more careful as to what I say. I didn’t really believe I’d do it, but he did! I suggest you find a psychologist or therapist, and/or support group, and also a pain doctor. There;s a support group online for whatever you have, called ‘Patients Like Me.’ There are also medications you can try. Morphine ER has made my life better. I used to be crying in bed everyday from nerve pain. It’s never going to be great, but it can improve. Also, see about high dose Thiamine therapy (B1). There’s a nutritionist on TH-cam called Elliot Overton who has used this protocol with success for FM. His channel is EO Nutrition. I’m trying it right now. I’m also doing the Carnivore diet, which has healed many people. It’s difficult, but possible. So, please don’t give up. I’ve been through a lot of pain, depression and anxiety for years. I’ve had more a pain than most people will ever have in their life from many diseases, so I really do understand. The future is scary, but we don’t even know the day or time God will take us. It may be sooner than you think and most likely from something you’d never suspect. Let our creator decide when it’s time. Trust in Him. Please get some help! I will pray for you. God bless and help you🙏🏻❤🙏🏻
.... Pretending to be fine at work, because of being afraid to loose the job. Being afraid of not coping with the job every day and days in advance ... will I manage next week? ... Doctors saying: "Okay, this is not an emergency, come in next week ... . " Being afraid of the coming night: "Will I sleep better this time? I'm so tired..." Waking up and not going back to sleep for hours and you know, you have to get up and work... .
I hear you. The struggle to balance work, health, and the constant uncertainty is tough. Pretending to be fine at work when you're dealing with health issues is a heavy burden to carry. I know it too well. I hate nights! The stress that you need to sleep and rest only lead to more insomnia and more stress. It's viciuos cycle. I'm sending you strength and positive energy during this tough time. 💪💕
I almost lost my new job after finishing school- prior to getting a diagnosis when I finally did I was able to get a written letter stating I had a medical condition and my job has been more flexible. However I may apply for intermittent medical leave because I still struggle some days
One aspect I experience with fibro that I do not hear others talk about is medical uncertainty. To be more specific, when to attribute a problem/symptom to fibro and when to recognize it as something more serious or worthy of a visit to the doctor. I have had a new issue arise only to find out there is no evidence of anything concerning, but I have also ignored a symptom (new pain) only to find out it was not fibro-related and I should have sought medical intervention sooner.
Absolutely, that is a very valid concern. I can definitely understand the medical uncertainty you experience with fibromyalgia. It can be challenging to differentiate between symptoms that are related to fibromyalgia and those that may indicate a more serious underlying condition. It’s so easy to downplay or dismiss symptoms as being solely related to fibromyalgia when they may actually be indicative of another health issue. Living with fibromyalgia means navigating these uncertainties and finding the right balance between self-awareness and seeking medical attention. Remember that you know your body best, and it's important to trust your instincts. It's essential to strike a balance between self-monitoring and seeking medical intervention when needed but when in doubt, seek help.
Watching this video early hours of the morning as once again woken up by my pain. I get severe pain in the centre of my back that radiates around my ribs and I feel like I’m having a heart attack. Just one of the fun symptoms of chronic pain. 😢 30 years + of all this and so so tired. Thank you for this video, it helped me tonight.
I’m so sorry you’re going through this, it’s absolutely exhausting to be in that kind of pain, especially when it wakes you up in the middle of the night. You are so strong for enduring it, even when it feels impossible. I’m really glad this video gave you some comfort tonight, it means so much to me to hear that. Please know you’re not alone in this. We’re in this fight together, even on the hardest nights. Sending you so much love and strength right now.
I’m so glad my videos have helped you feel understood. It’s so important to feel seen and heard, especially when dealing with something as isolating as chronic illness. Knowing that my experiences resonate with you means a lot to me, and I’m grateful we can connect in this way. Remember, you’re not alone in this, we’re all in it together, supporting each other every step of the way. Take care, and thank you for being here. 💜
Yes, I loved you saying I feel "shitty" most of the time. I have had this fibro crap for over thirty years. Nobody knows what shifty effect it has on your body and family.
I'm glad my words resonated with you. Fibromyalgia indeed makes you feel "shitty" most of the time, and it's challenging for anyone who hasn't experienced it to truly understand the impact it has on our life and our loved ones. Living with this condition for over thirty years is a testament to your strength and resilience. Remember, you're not alone, and there's a community of individuals who understand what you're going through. Sharing your experiences and insights can help raise awareness and provide support to others facing similar challenges.
@@tt_looking_glassYep,it feels “shitty” alright! Sometimes I wish the unbelievers would have to experience it for a month at my worst, just so they’d understand and stop blaming me, or saying I need to try more. It would be a revelation to them!
This is so painfully accurate! It truly is a daily,vsometimes hourly struggle. Dealing with doctors is the worst. I've just come to the conclusion nobody is going to understand, except those that have it. Thanks for sharing.❤
Thank you for sharing your thoughts. It truly is challenging, and I'm sorry you've felt this way too. Navigating the healthcare system and trying to find understanding and empathy can be disheartening. But, as you mentioned, there's a unique bond among those who experience it firsthand. This community understands deeply, and it's comforting to know we're not alone. While it might be tough for others to fully grasp what we go through, your feelings and experiences are valid. Stay strong, and remember we're here for each other. Sending you warmth and support. ❤️
So, true! There is a community online called, “Patients Like Me” where you can find people who have your diseases, and share. It can be helpful to find other ideas to try or at least you can rant and everyone understands. We all need to sometimes!
I usually take a bath to wash my hair. I can also soak my legs in the hot water. I always brush my teeth first as I am usually too exhausted to do it after being in the hot water.
Yes, sometimes I do it in the bathtub too but the heat makes my POTS symptoms worse and I feel very exhausted like you mentioned and then I have no energy to dry my hair. I can’t go to bed with my hair wet as I always get a sore throat.
Girl, you are Not alone! I’m setting here, listening to you as IF you’re talking about me!!😮 I’m diagnosed with SLE Lupus, Fibromyalgia, Mix Connective tissue inflammatory disease. So I’ve been through everything that you are talking about and more… My only ever and ultimate help is my Faith in Jesus. I’m so Grateful that in my weakest moments, He is with me to give me strength to carry on. I’m Praying for you all my Sisters.🙏 Shalom.
Thank you so much for sharing your thoughts and experiences. It's incredible how many of us living with chronic illnesses can relate to one another's struggles. Your faith in Jesus is undoubtedly a tremendous source of strength, and it's heartwarming to see the support and prayers you're offering to your fellow sisters going through similar challenges. We're all in this together, and your positivity and kindness shine through. Shalom to you too, and may you continue to find strength and support on your journey. 🙏💕
I am a man and i suffer with this bad condition, but the worse part is it gets worse with age, my prayers go out to all with this horrible condition, thx matt P S your hair looks fine..
I'm sorry to hear that you too are dealing with fibromyalgia. I am also finding it is getting worse with age. I know it is not considered a progressive condition but for me being close to 50 and perimenopausal has created havoc in my body and my fibromyalgia has taken the ride. I hope you find my videos of value and I would love to see you around. Thank you for your kind comment about my hair as well. Take care, Matt!
You're right! It does get worse as you get older! I have two disabled sons in their 30s, and I do everything for everyone! I'm so tired. Some days, I can barely take care of myself, let alone 2 dogs and a house plus the boys!!!! Now I need a knee replacement! HOW???? Good luck. I no longer have any friends I hope you do!!!
I'm also finding it getting worst as I age as well. However I find If I exercise daily for 3 hours, it helps tremendously, and the pain lessens. At first it was extremely hard to exercise, then it was easy. However I stopped during the c word pandemic, so now I'm having a hardtime getting back on track. However slowly working back up to where it's no longer bothering me as severely. I refuse pain management because I'm a nurse and I want to continue to work as I can
I can resonate with everything you say… the nervous system is on hyper alert which makes it difficult to navigate social situations. The frustration of not being able to fulfil my physiological needs is a real issue… the physical and the mental is not conducive to achieving my personal goals. 😢
I totally get you. I hate how when I'm in a bad flare, I let go of personal care. Which makes me feel awful both physically as well as making me feel unattractive and dirty. And that is just in the moment, then there are the long-term goals and dreams that never happen because of our bodies determination to stop us.
As a 24yo male student, everyhting you listed is true 100% - Being Dependant -> sometimes you just can't - Not being believed -> thanks for that, with my diagnosis its not a problem anymore - Being Unreliable -> non constant flares - Lack of Energy -> impact on mood - Can't be as fit -> frustration - Pain all the time -> Limit your plans and impact on mood - Unpredictable symptoms -> can't do what you want when you want - Lack of medical research in the field -> not specialized medication that helps really All of this has such a huge impact on your mental and it feels like you're not living anymore but just a spectator. I just wish I could disapear, being in constant pain is like living in hell and I don't wish it on my worst ennemy Thanks for this video, to all my fellow sufferers, I love you, you're strong and never give up, sometimes you have good days and they probably worth living for. To those who have an affected loved one, please cherish and love them, help them when in need it would change their life forever and they would never be able to pay back
It's incredibly tough dealing with the unpredictability, the pain, and the way it seeps into every aspect of life, making us feel more like an observer than a participant. Thank you for sharing your thoughts and feelings with such honesty. You remind us of the importance of compassion, understanding, and never giving up. Let's keep supporting each other, celebrating the good days, and finding strength even on the hardest ones. Sending you love and support. ♥️💪
@@geoffgunn9673I have tried CBD several times, it did nothing for me. I’ve even tried marijuana, with no luck. The edibles make me sick. Some people swear by CBD, so if people haven’t tried it, they should at least give it a try.
Your post hit home hard! The part that you say, “you’re not living anymore, but just a spectator” is so true it got me teary!😢 And, it is a living hell I wouldn’t wish upon my worst enemy! Though, at times I wish my family would experience it for just a month at its worst, so they would understand better and stop blaming me for something I have no control over. Have you ever tried an opiate? My nerve pain was horrific. I would lay in bed crying almost everyday for years, and I was on Opana. I finally told my doctor it wasn’t working, and insisted we try something else. Extended release morphine has actually helped the nerve pain enough that I’m out of bed more and don’t think of doing myself in anymore. Here and there I have a really bad day, but it’s not daily anymore. It’s so hard to find what helps, as we’re all so different. If you’re a Christian, may I suggest that you offer your pain up to God, united with the cross of Christ, as a prayer. You can help save souls that way, or help others offering it with an intention. It doesn’t lessen your pain, but it gives your pain some meaning. May God bless you with better days❤
The struggle is real. I can relate to everything you said. There is also the insomnia and restless legs. The waking up and feeling like you never slept at all. People don't believe us because we look normal they don't have a clue what we're going through. I pray for a miracle for all of us suffering.
Thank you for sharing your experience with us. It's definitely tough when people don't understand us because what we go through in invisible. Insomnia and restless legs are particularly challenging, as they disrupt much-needed rest. It's important for people to understand that just because a condition isn't visibly apparent doesn't mean it's not real and affecting someone deeply. Wishing you strength and comfort. ♥️
@@tt_looking_glassThe bottoms of my feet tingle. I assumed that was coming from a bad back? Is that a symptom of fibromyalgia? Sometimes the tingling goes up my legs.
@@stacyjessup9577I have the same symptoms and wonder the same thing, is it fibromyalgia causing it or my bad back? Possibly both, however, that symptom only got worse in my 40s, I'm in my sixties now. I've had fibro since childhood, makes me thinks it is the combination of both.
@@shawnacarter946 how is having something worse than fibromyalgia going to be of any use. That's easy as you're aware fibromyalgia is untreatable. Not so the spinal cyst Tarlov cyst disease. Ask a neurologist to find it. You'll be more than halfway there. Easily imminently treatable. Don't be discouraged the nuerolgist hasn't heard of it
@@stacyjessup9577It could be FM, or it could be small fiber neuropathy, which happens in about 30% of people with FM. I have it and I now have constant tingling and buzzing almost over my whole body. It began suddenly with burning pain, after a stomach infection which also caused burning pain. Then it went into feeling like I was stepping on rocks barefoot, even with shoes on. Then my feet would get extremely cold, and now I’m losing feeling and balance, along with many other symptoms. Look it up.
Recently diagnosed, but believe I've had it for some time. THIS was needed today. Called my doctor in TEARS because I've awoken To my hands feeling like the were on fire and completely numb.
I'm so glad that the video resonated with you during this challenging time. Getting diagnosed with fibromyalgia can be both validating and overwhelming, especially when you look back and realize you've been experiencing symptoms for a while. Believe me, I know! The pain and sensations you described, like your hands feeling like they're on fire and numb, are incredibly distressing. Connecting with others who understand what you're going through can provide a sense of comfort and support. Stay strong and continue seeking the right resources to manage your condition. Thank you for sharing your experience, it helps others not feel so alone. ♥️
My left hand goes numb if I hold onto this phone too long it's a nuisance I cannot do much physically. Let's support each other I also have insomnia stayed up for 2 whole days how exhausting that was I also used a heatlamp over my fibromyalgia pain relieves me alot. Right now I have brain fog in amongst anything else that comes my way.
I feel very humbled/honored that you assigned higher priority to your subscribers with very pertinent/relatable Fibro content before washing your oily hair.😬Seriously, your hair looked very nice (but I wonder if it looks as good in 4K resolution 🤔🤣). Forgive my off humor….The highly depressing nature of Fibro we live with daily compels me to “lighten up” any human interactions or nagging/debilitating physical symptoms as often as I can (unless I feel so bad that I can’t even think clearly). Anyway, this was a very good presentation you made!! All points(struggles) were very relatable! My short hair is easy to maintain, but I have a laundry room sink I can stand next to when I want my hair washed without having to get in the shower …………“Pain” creates so many different feelings in our bodies, it is impossible to describe to someone….something as trivial as gas pain/discomfort takes on a whole new meaning for a Fibro sufferer…🤢
Ugh the disability dilemma. You have to document everything else. All depression symptoms, anxiety, arthritis, IBS, breathing problems, sleep issues, everything! Keep on documenting. For me short hair is harder cuz it has to be styled and kept up with no money.
I hear you, and the disability application process can be incredibly challenging. It's often a meticulous and time-consuming endeavor, requiring documentation of all the symptoms. The constant documentation is overwhelming. On top of that, the financial stress can make things even more challenging. Short hair can be trickier to manage, as it often requires more frequent styling. With long hair, you have the flexibility to braid it or put it in a bun and be done with it. Once I had bangs and OMgoodness! that was horrrible as I had to deal with it every morning. I also got greasy bery quickly and looked bad if I didn't wash my hair everyday. Thank you for sharing your experiences, and I hope you find the support and solutions you need to make things a bit easier.
I had a husband who did nothing but criticise and complain about my illness. Sleep too much, don’t sleep enough. Eat too little, eat too much, eat the wrong sort of foods. It never stopped. Getting a divorce was one of the best choices I’ve made. I had a family member say to me ‘ahh a syndrome…, isn’t that what they call an illness they can’t pin down?’ Life’s been really painful emotionally at times.😢
Vicinter, I’m so sorry you had to endure that. Living with a chronic illness is hard enough without the added pain of being criticized and dismissed by those who should support you. Choosing to leave and prioritize your own well-being is such a courageous decision, even though I’m sure it wasn’t easy. You deserve kindness, understanding, and people who truly see what you’re going through. Sending you so much love and strength as you navigate this emotional journey. You’re stronger than you realize. ❤️
With lupus + CFS, I can relate especially to being unreliable (especially with a job- not being able to work a regular job and losing income because of it) and not being able to get fit due to exercise intolerance. And of course, not being believed - mostly with CFS, less with lupus after my diagnosis - but I felt like I wasn't believed a lot before I got diagnosed. For me, although I've had widespread pain with CFS, my main issue was always fatigue, but also headaches, brain fog, weakness, and crashing after activity. Pain was never a main complaint for me, as you said. But I do believe they are two sides of the same coin (fibro and CFS).
Nicole, I just realized I never answered your comment. I'm so sorry. Thank you for sharing your experience and relating it to the challenges discussed in the video. It's saddening to hear that your experience with lupus and CFS has presented similar struggles in terms of unreliability and the impact on your ability to work a regular job. It's disheartening when individuals with chronic illnesses like fibromyalgia, CFS, and lupus face disbelief from others, especially before receiving a formal diagnosis. The lack of understanding and validation can add an extra layer of frustration to an already challenging situation. While some people think that pain is one of the worst symptoms someone can get, fatigue and brain fog can be as debilitating if not worse. Sharing our experiences is essential in breaking down misconceptions and building empathy within the community.
I have 2 friends that are sisters that literally harass me and tell me that no one wants to invite me to do anything anymore bc I always cancel and they can't depend on me ruining their plans. I don't know how I'll feel from minute to minute let alone in advance. I don't have the money to keep up with their dinners out with the girls or anything else. I'm so hypersensitive that I could feel everything truck passing by on a busy road or my neighbor has an automatic ignition and he starts the car in colder weather 15 minutes before he leaves and my who bed vibrates. I can feel motors running through my body. It creeps me out. I can't wait for it to stop when he leaves. Does anyone else experience anything similar if you live near busy roads or people warm up their cars? It amazes me that I am that sensitive. I feel like I always have the heebie jeebies and my nerves. my skin, and muscles are always buzzing with electrical shocks. What kind of crazy autoimmune disease is this? They really need to research this and take us seriously. I cannot find any Drs that specialize in this where I live in New York, on Long Island. Anyone have any suggestions on Drs or kinds of Drs that they have found helpful or say something other than learn to live with it or I can't help you so I don't want to know about it. They've done all they know. 😡🤬😰
@@yacht2sea I would think working on Nervous System Regulation will be helpful for you. Unfortunately western medicine doctors don't help with this, its more of a holistic or alternative medicine doctor that may help you in person with it, but there are tons of youtube videos about how to do it yourself, as well as online courses. It sounds like your nervous system is in hyperoverdrive, you're in survival mode. You need to calm your nervous system and bring it back to "rest and digest" rather than "fight or flight". Thats just my opinion on what it sounds like, if you research what I'm saying you may find it applies to you. Good luck! You can overcome this. I have done it for myself. I would also recommend checking out Raelynn Agle's channel on healing stories of people with nervous system hypersensitivity/ CFS/ fibro. Its all the same root cause, so even if you haven't been diagnosed with CFS specifically, her videos will be very helpful to you still
This video is exactly what i needed to see today, finally received a diagnosis recently and feel like ive been left without anything other then an NHS webpage for support. The unreliable one made me realise this is genuinely one of the biggest struggles ive faced for a lot of time.
Im so happy you found this video helpful. I hope my channel helps you not feel alone and inspire you to have an amazing life in spite of this diagnosis.
I just found out it does get a lot worse. Thirty years plus still have hubby and two kids that are tired of fm and everything else that goes with it. Yesterday was my 69th birthday and I was proud that I was still alive and Ithought doing pretty good. Uh nope my kids have been getting tired of taking care of me as my hubby is otr truck driver and is away a lot. So the day before my birthday I asked the kids to clean bathroom as it is a hated chore and both kids blew up, yelled at me that I never appreciate them, and acted like spoiled teens instead of priveliged 30 plus and yes spoiled adults. I still am in shock with fm kicking into high gear with brain fog, all over deep muscle pain and sharp shooting neck pain due to stress. Hubby arrived in the middle of that and apparently decided ignoring me and my birthday never exsisted so now I am very depressed after crying all nite as I really wanted that day to be special for me as I have always made sure hubby and kids had special ones. Not sure just what to do..... get mad and scream, leave and give myself a special day at spa and nite at bar with hubby, sit everyone down and explain how horrible they have been to me or what??? Any advise?
I'm really sorry to hear about the difficulties you're facing. Living with fibromyalgia is incredibly challenging, especially when it affects our relationships. It's understandable that you feel hurt and disappointed by your family's reaction on your birthday. In times like these, communication is key. Consider having a calm and honest conversation with your family members. Choose a moment when everyone is relaxed and not in the heat of the moment. Express your feelings and let them know how their actions have impacted you. Sometimes people may not fully understand the extent of your condition and how it affects you, so it's important to provide them with that insight. Open and compassionate communication can help create a better understanding among all of you. Bottling things up only fosters resentment. Remember, you deserve love, appreciation, and support, and it's important to advocate for your own well-being while also fostering understanding within your family. Your children are grown and you have given them all the support and care they needed when younger. It's time they recognize that and show their love and appreciation for you. I am at a stage in my life where my children are basically grown but still live at home. I feel overwhelmed with having to cook every day for them when I don't feel well and it takes so much energy for me. However, they are used to having a home-cooked meal every day. My youngest is 17 and my oldest is 27. At what point I am no longer responsible for cooking for them? This is something I am still navigating. There is no easy answer. It is natural to desire a special day for yourself, especially on your birthday, but remember that taking care of your well-being should be ongoing. In what ways do you manage stress and prioritize self-care on a regular basis? This could involve exploring relaxation techniques, engaging in activities you enjoy, or seeking support from others who understand what you're going through. I hope this channel gives you a bit of comfort and helps you not feel alone. I wish you all the best in navigating those feelings with your family. ♥️
@@tt_looking_glassWere you able to teach them to cook? If not, it’s now time too! Too many young people these days feel they deserve everything without having to do anything. My family has never really understood what I’m going through. I’ve been told I’m selfish or lazy, and it couldn’t be as bad as I make it out to be. The truth is, it’s worse! I try not to complain, but many times you end up in bed for the day and you can’t help but tell them why. Anyway, I’d explain the situation and have them take over kitchen duty! It won’t be long and they will be glad they learned when they move out on their own. My kids are grown and out of the house, and I’m on the Carnivore diet, so my husband takes care of himself. He doesn’t eat as well as when I was cooking, but I don’t have the strength to make two meals, so I just take care of myself. He does most of the shopping, (which is really a mess!), but I can’t do it. I used to push through everything and end up feeling terrible, but I got to a point where I basically couldn’t do much of anything. It is what it is! Has your pain gotten worse over time? Mine has. Of course I have collected other illnesses along the way, too, that add to it. I’ve had FM for about 30 years, too.
Yes I can relate to these struggles. My fibromyalgia has disabled my mobility a lot. I can’t express enough to finding the right team of medical professionals to help aid you in managing your symptoms and establishing a supportive family to be helpful.
Thank you for sharing your experience. When illness affects our mobility it creates immense challenges. You are so right! Connecting with the right people can make all the difference in coping with the unexpected struggles that come with fibromyalgia.
Lilly Mae, wishing that would happen, but living with fibro 58 years has depleted my bank account. Health care is so expensive in this country and getting good specialists is hard to find.
This is a brilliant video I have had fibromyalgia for 20 years and it’s hard u r so talking the truth u know a lot I just wish I could wake up one morning and feel normal and not in all this pain it’s not good thank u so much Jackie u k 🌈😊
Thank you so much. Yes, it does wear you off. I’ve also had it for a long time and it’s exhausting. I can’t even imagine what it would be like to not have pain. It’s been so long, I can’t remember anymore.
I hear you but it's important to remember that your worth as a friend isn't measured by your ability to always be present or meet every expectation. True friendship understands, adapts, and supports through life's ups and downs. It's okay to not always be able to show up in the way you or others might want. What matters most is the love and intention behind your actions. You're navigating your challenges the best you can, and that doesn't make you a bad friend. It makes you human.
There are so many issues with fibro, it's hard to pick which is the worst! Right now it's the exhaustion, cold sweats, and the pain in my bones. I got a walker, just standing takes energy, So this helps so much! I was embarrassed to try but it's a godsend!
It really sounds like you're going through a tough phase with your fibromyalgia right now. The exhaustion, cold sweats, and deep bone pain you're describing are incredibly challenging symptoms to manage daily. I can imagine it wasn't to get a walker and the mix of emotions and the possible stigma around mobility aids. But it's great to hear how much it's helping you conserve energy and maintain some independence. Mobility aids can be game changers, offering that extra bit of support and safety when you need it most. Many in the fibromyalgia community understand and share their experiences, and finding support among peers can be very validating. Keep reaching out, sharing your journey, and embracing the tools and strategies that help you navigate Fibromyalgia.
A little late to this conversation but this was a great revisit for me of the things I stopped telling people because I was told "its the only thing you talk about" or people belittling your syndrome by saying "I'm tired too; that's just normal".
It's frustrating when others dismiss our experiences with fibromyalgia, mistaking it as something normal like being tired. Many of us with fibromyalgia face similar challenges, this is why it is important to talk about it and raise awareness. Keep sharing your experiences and speaking your truth. We're here to listen and support each other. ❤️ Daniela
Yes! I stopped telling people too. I want my extended family to understand why I am so unreliable, but they just think I'm a complainer. Luckily, I've gotten to a point (or an age) where I am less motivated by (anything) people pleasing, but still. I have to admit it feels very unsupportive and alienating (making me not want to be with them anyway). (I'm not a loser, people. I've got a disability!) Just so frustrating.
It took me 3 years to get disability for fibromyalgia here in Australia. This was only after I developed Dystonia as well. Love and appreciate your videos Daniella and your bun looks adorable.
I’m glad you finally got disability even though it took you three years. I’m on disability too but not for Fibromyalgia. I would not have qualified for fibromyalgia but I have many other chronic illnesses and I qualified for those. The problem is my disability is from a private insurance and it will only cover me fire two years. I’m like… this in interesting. Does that mean I’m going to be cured in two years? What am I supposed to do then? I would never qualify for the government disability.
I can't believe your disability is for 3 years because when I filed for mine the Dr had to state that it won't get better and the magic words they had to use was fully treated. I had to coach my Dr to write that phrase! Mine is for life because it's through the government here in Australia and am very grateful because I'm single and was struggling to make it financially on unemployment benefits .
@@wendygraham7787 my disability is not through the government. It was a privately paid insurance through our association. It’s the deal that was negotiated by the association otherwise it would have been so expensive we wouldn’t have been able to pay. I don’t qualify for the government disability because my husband makes decent money. But they don’t take in consideration we have five children still living at home, some still in university and that we help family financially. And my disability is only for 2.5 years. 6 months was considered short term disability. Then you have to reapply for long term disability and that’s for another two year. And then that’s it. You are out.
I’ve got a million things wrong with me and still haven’t managed to be approved no matter how many doctors and specialists have tried for me. Given up now.
@@cathie-aussiegirl6547 I understand wanting to give up. Please don't give up , that is what they want you to do. . I had to lodge an appeal to get mine.
I was a teacher for 20 years. Due to all the symptoms of fibromyalgia, ulcerative colitis and POTS I had to leave. I’m blessed that my husband was supportive about me quitting. He saw how much I was struggling. I understand not being reliable. It’s extremely frustrating! Thanks for sharing! I think your bun is cute! 💗
Thank you. It is so hard to give up a career that you worked so hard to have. There is another TH-camr @healwithlaurennicole who was also a teacher and had to leave because of Lupus. She has a very inspiring channel with a big focus on healing.
@@tt_looking_glass I will check out her channel. Thank you! I taught kindergarten and 1st grade. I absolutely loved it until I got sick. I know how lucky I am that my husband was supportive and we were able to get by without my salary. It was still hard though. One of the best things we did was downsize to a smaller home that doesn’t require as much energy to maintain. I’m enjoying your channel. Have a great day. Hoping you don’t have too much pain today.
@@debrairvin9776 I hear you. I used to love my job too but had to quit because of my deteriorating health. I totally over did it today and I can already predict a bad day tomorrow but it was totally worth it and I would do it again.
I was just about to comment on this, Debra, because I can 100% relate! I had to leave my teaching career, only 3 years in, because of Lupus. And then I saw Daniela gave me a shoutout, so thanks Daniela! I'm releasing a new video tomorrow about how leaving fulltime work gave me the space I needed to rest, decrease stress and heal myself. I'm so thankful to have had a supportive husband as well. I'd love to connect with you more, Debra! 🙂 I'm so happy for you that you were able to leave and take care of your health, although I understand the emotional pain of feeling like we were forced to leave a career we loved and enjoyed. Its definitely been a tough road emotionally, but my body thanks me for it every day and I am grateful for that!
@@healwithlaurennicole I’m sorry I am just seeing this message now, Lauren. I know Lupus can be so challenging to treat and live with. I will check out your channel now. Thank you! 🌸
I relate to all the symptoms. The constant aching, the brain fog, wanting to get fit and strong but having to start over again and again, being unreliable…I highly suspect I have fibromyalgia, but so far I don’t see the point in getting officially diagnosed because of all the trouble you have to go through and the after all disbelief. What would a diagnose bring me if nobody believes me anyway? I keep figuring out how to get through the days, as every day brings a new level of pain and fatigue. No, that would be too reliable 😂 some days are actually really good and pain free. I can sometimes jog a 5k, do yoga, go dancing and horseback riding on the same weekend! 🎉
Oh, Mirella, I feel you so much on this. The constant cycle of starting over, dealing with the aches, the brain fog, it’s exhausting. And I completely understand why you’d hesitate to get an official diagnosis. Jumping through hoops only to face disbelief can feel like an uphill battle you’re not sure is worth fighting. It’s frustrating when you know what’s real but still feel like you have to prove it. But wow, those good days sound incredible! A 5k, yoga, dancing, and horseback riding? That’s such a triumph! It’s amazing how our bodies can surprise us sometimes, even with all the ups and downs. It must feel so freeing on those days, like a little victory that’s worth celebrating. 🎉 Thank you for sharing this. It’s such a great reminder that even in the hard times, there are moments of light. Keep finding those sparks, and know you’re not alone in navigating all this. ❤️
Being ALWAYS tired, in excruciating pain, and unpredictable are a hallmark of fibromyalgia and my biggest struggles. I have all the tools, heating/cold gadgets, and nothing helps. Please keep advocating and raising awareness. Those who comment negatively don't know what it means to talk to someone who shares our pain, understands us, and can connect! Especially since we don't look sick!
You’ve summed it up so perfectly, always tired, constant pain, and the unpredictability that makes planning anything feel impossible. Thank you for speaking up about how important connection and understanding are, especially when we don’t “look sick.” That invisibility is such a huge part of the struggle, and your words are such a powerful reminder to keep advocating and supporting one another. You’re amazing for pushing through and sharing this. It means so much, and I’m sending you so much love and understanding. We’ll keep raising awareness together, you’re not alone in this fight. ❤️
You are the first person I’ve ever heard to talk about exercise intolerance. I’ve had that for years and doctors look at me like I’m either lazy or pushing too hard. I resonate with everything you’ve talked about here. You are heard. ❤❤
Exercise intolerance is something that's not talked about enough, and I completely understand how frustrating it is. You're definitely not alone in this. It's really tough when you're doing your best, but it feels like no one gets it. Just know that your efforts and struggles are valid. It's about finding what works for you, at your own pace, without the pressure of fitting into a standard mold. I'm glad you connected with what I shared. It's so important to have these conversations and support each other. ❤❤
Exercise intolerance was the symptom that really woke me up to something really being wrong. Before that every doctor just kept telling me I am fine.... so for years I just kept telling myself that its all in my head. But the exercise intolerance was SO debilitating! Then my doctor laughed at me and made a joke about it sounding like an excuse to be lazy. Now I have a new doctor. I miss working out...and that rush of endorphins after a good long run.
I'm really sorry to hear about how your exercise intolerance t was initially dismissed by your doctor. It can be incredibly frustrating and disheartening when the symptoms that affect your life so significantly aren't taken seriously. It's a big step that you decided to switch doctors, and I hope your new doctor provides the understanding and support you need. Stay strong and keep advocating for yourself. You're not alone in this, and I'm glad you reached out to share your story. Here's to a better understanding and management of your symptoms going forward!
I hate this part. No-one understands that you just can't excercise. I get told by my doctor that I must go to the gym. I want to burst out laughing. I would love to be fit. I'm not fat but am overweight in my eyes. I want to be stronger in my limbs but I just can't. I even got myself a dog that has to be walked. This forces me to go out twice a day on long walks. If I don´t my dog will have stomache ache and I just cannot have that, because that must be the most terrible feeling for my dog, so I have to go out with him. There is no way I can get out of that. So I have done something to force me to move. I hate this world because nobody understands. I do still work, have reduced my hours and don´t show my depressive state at work. I always laugh and make jokes and act quite normal. When I leave work and get into the car I burst into tears. I sit there and cry for a solid 5 to 10 minutes before I drive home. I hate people, they know I´m not well and that I have chronc pain, but nobody cares. In this day and time nobody has any empathy anymore. I hate people and try to avoid them at all times other than when I´m at work.
Today, I had a sharp jabbing pressure on the arch of my foot. It was like the arch had barbed wire in it. I screamed for about a minute until I could scratch, then, it calmed down. This doesn't happen often, but it has happened to me occasionally since I was a kid.
That has occurred to me as well! My pup used to look at me strangely when I’d let out a whimper or yowl out suddenly 🤬. Now she’s more used to these random yelps as I hobble around. Voodoo or Karma or wtf ??? I sometimes ponder what I might have done to deserve these moments of agony. It is somehow reassuring to read so many similar stories. Invisible misery doesn’t always love company- but I guess if fellow birds can share tales of these kind of painful feathers… we can at least intermittently flock together in this way, inbetween the flares and restless sleep cycles!🚨🙏🏼❤️🩹⚕️🪬 Thanks D for creating this safe space. It definitely resonates!🇨🇦
I posted a comment but don't see so in case it doesn't up I'll just that everything you said resonated with me and is spot on relatable.This is the best vid I've seen on the struggles of living with fibro. And you look beautiful with your hair in a messy bun.Sorry if the other longer comment shows up.
Strange. I don’t see the other comment but you know what? This has happens to be when I have left messages with other creators, so I think there is something up with TH-cam. It’s always good to check. Thank you so much for the comment, I really appreciate. This video was not even planned it was a last minute ideas I had when in bed and could fall asleep. I just grabbed my phone and wrote some pointers and filmed the next morning. I’m glad people liked it. ❤️
I’ve been dealing with fibromyalgia going on 25 years now. It’s a very long story but to keep it short, after my father died my mother had my hair cut and made me get a perm twice a year. She hated my long straight hair. So, after she died a few years back I let it grow out. (Covid helped with this decision.) My hair grew to 36”. I loved it. It helped me to feel some freedom from my childhood. I felt like it was who I was meant to be. But, keeping it clean and braided just became too hard. Then, last year I learned that I needed brain surgery. So, I made the decision to cut it to shoulder length. I had to simplify my life. I still miss it but I don’t regret it. I’m almost 60 years old and I’m finally learning to love myself and how to really take care of myself. I need it shorter for now, but that doesn’t mean it will be forever.
Hi Sharon,Thank you for sharing such a personal and profound part of your journey. The story of your hair is incredibly moving-it's so much more than just hair; it represents your freedom and reclaiming your identity. I'm sorry to hear about the challenges that led to cutting it, especially the need for brain surgery, but it sounds like you made a wise decision to simplify your care routine to better manage everything. It's inspiring to hear that you are learning to love yourself and prioritize self-care as you approach this new chapter in your life. It's never too late to embrace who you are and make choices that support your well-being. Whether your hair is long or short, what truly matters is how you feel on the inside, and it sounds like you're growing stronger in that respect every day. Thank you again for sharing your story with us. You're a testament to the strength and resilience that we all aspire to, and I wish you continued health and happiness on your journey of self-love and care.
Hello 🤗 Thank you so much for sharing this, I needed this today more than ever! I am a 48 yr old woman that has been going through this for the past 20 yrs and it has taken a hard turn in December. I am currently fighting to see a specialist and its not easy in QC, I am feeling lost and feel like I am not taken seriously. Thank you for making me feel better and that I'm not loosing my mind! Take care 🤗
Hi! 🤗 I'm truly touched that my words could provide some comfort to you today. It's clear you've been facing quite a journey with Fibromyalgia, and I know how challenging it is. I'm sorry to hear about the difficulties you're experiencing in getting the specialist care you need. Sometimes, advocating for your health can be tough, but your persistence will lead you in the right direction. Stay strong, and don't doubt yourself. You're not losing your mind, and your determination is admirable. If you ever need someone to talk to or have questions, feel free to reach out. Take good care of yourself, and may brighter days be ahead! 🤗💕
I'm truly sorry to hear about the challenges you're facing as a single mom living with Fibromyalgia. I cannot even immagine how hard that is.Your strength and resilience are nothing short of incredible. Balancing the responsibilities of work and motherhood while dealing with chronic pain is undoubtedly a heavy burden. It's unfortunate that you don't have someone you can rely on for support during those difficult moments. Sending you strength and positive vibes during your journey. 💪❤️😢
I have Fibro & ME & it was so good to hear u talk about how it affects ur life. Its definitely a struggle, as no one can see ur pain, or know the crippling fatigue that prevents u doing the things u love in life. I hope for everyone with this condition, that a cure will b found soon 🙏
I'm glad to hear that my video resonated with you and that you found it relatable. Living with Fibro and ME is challenging, especially because these conditions often go unnoticed by others due to their invisible nature. Your hope for a cure is shared by many, and medical research continues to make advancements in understanding and treating these conditions. Let's keep hoping for breakthroughs that will make life easier for everyone dealing with Fibro and ME. 🙏 Thank you for sharing your thoughts and being a part of this community. Your support means a lot!
I've had me before fybromyalgia but fybromyalgia is a symptom of me listed muscle pain so to myself they are same thing and a part if Asperger's add albeit took me 43 get diagnosed
So sad it took so long for your diagnosis. It was 30+ years for my diagnosis. So frustrating & life wasting. Hope a cure is found soon @@Truerealism747
You nailed my top 10! Thank you for your clarity. Unreliable, exercise fatigue and the seemingly limited ability to support myself yet pay $1500 month in out of pocket expenses to manage the illness. Though post covid opportunities are better than ever with remote or hybrid work options. Emotionally heartbreaking loneliness/isolation and challenges in intimate relationships - including not being believed - it's all exhausting.
Marianne, it sounds like you’re carrying quite a heavy load, and I really appreciate you sharing your experiences so openly. Managing illness-related costs while dealing with the physical and emotional aspects of your condition, it’s a lot for anyone to handle. I’m glad to hear that the post-COVID new landscape of work has provided some good options, at least in terms of logistics. Yet, the emotional side, like loneliness can be just as tough, if not tougher. It’s tough when others might not fully understand or believe what you’re going through. I'm here for you, and so is this community. Whenever you need to express yourself or find a bit of comfort amidst the struggle.
Yes girl, I deal with all that and now I’m having symptoms of Raynaud’s phenomenon. I appreciate ur video so much. It’s nice knowing that I’m not the only one that deals with these symptoms. Thank you and God bless
Thank you so much for letting me know the video is helpful. It helps motivate me to keep making them. Raynaud’s is awful and on top of all that…. Man!!!
Oh my gosh, I’m so glad it resonated with you! It’s wild how so many of us go through similar things but also have our own unique set of challenges to add to the mix. It means so much that you connected with the video, just knowing that someone else gets it can make the weight of it all feel a little lighter. ❤️
@ even though it seems there are so many with fibromyalgia, going through the same problems; yet I never meet anyone around. It's invisible even between us!
I’ve been trying for disability for 3 yrs now for my fibromyalgia + CFS. Plus now with my paraesthesia My life is so unpredictable and I hate having this disease, that I believe that my doctors are so over me talking about. But I’m not complaining I’m communicating but no one listens anymore. This disease has had a tremendous effect on my marriage, mental health and I’m ready to give up 😢
I'm really sorry to hear about your struggles with fibromyalgia, chronic fatigue syndrome and paraesthesia. It's tough when it feels like your doctors don't understand or listen to you. Try seeking support from patient advocacy groups or online communities to connect with others who share similar experiences. Don't give up-reach out to your support network and let them know how you're feeling. You're not alone, and there are people who care and want to help you. Take care of yourself, and stay strong. ♥️💪
I am so sorry to hear your struggle. I am bedridden most of the time, and I know what it feels like to want to give up. Your life and mine still have a purpose, and I believe one day we will help another in the place we were. I pray Jesus will give you comfort, and I hope you are doing better. Sending hugs that don't hurt. :)
@@nancyl.martinez7156well, I sure trust Christ knows where we are, and can use us. As a bed ridden by this and other issues... the Lord has given us time to learn, and brings us the souls we are to share with... He conquers ALL and we serve Him... not this flesh💪💪🤐🙏😇💫
Thank you so much for your kind words. It means a lot to hear that the video resonated with you. 💙 Living with fibromyalgia, chronic depression, and RA is tough, so I’m glad you found the content helpful.
I completely understand this feeling, and I share your hope for a world without such pain and suffering. Chronic conditions like fibromyalgia are incredibly challenging, and it's heartening to see communities come together to support one another. I'm truly grateful for your kind words. ❤️
I can sympathize and relate with everything that you mentioned here. I am a man in my late sixties who has struggled with ankylosing spondylitis and fibromyalgia for over thirty years. I know what you mean about people thinking that you are some kind of a hypochondriac, I even fired my first rheumatologist eight years ago because he laughed off my fibromyalgia, saying that everyone with an autoimmune disorder automatically thinks that they have fibromyalgia as well. Doctors are human too, with their own opinions and prejudices. My AS was diagnosed by my eye doctor and my fibromyalgia was detected by my podiatrist who used a tuning fork to measure the sensitivity of my nerves to stimuli. I just happened across your channel and I thank you for sharing your experience with your viewers. I don’t have anything else to add, I think you covered the whole topic very well. You are a great communicator and we need more people like you to advocate for our community. I hope you have a partner who is willing to go “all in “ with you and give you all the support you deserve. I’m blessed that my wife is able to listen and understand my pain and fatigue, and she fully supports me when I’m unreliable and have to delay or cancel activities because of my condition. May God love and bless you richly!
Thank you so much for sharing your experiences and for your kind words. It really means a lot to connect with someone who understands what it’s like to live with ankylosing spondylitis and fibromyalgia. Hearing your story about the challenges with doctors and finding the right diagnosis resonates deeply. It’s tough when the people who are supposed to help us don’t fully understand or acknowledge what we’re going through. I’m sorry you’ve had to go through dismissive attitudes, but I'm glad you’ve found medical professionals who recognized and validated your symptoms. It makes such a difference when our conditions are taken seriously and treated properly. I can relate to your experience, especially having the support of a loved one through tough times. My partner has been my rock, standing by me through every diagnosis and every rough day. It’s such a blessing to have someone who understands and supports us unconditionally. It sounds like your wife is an amazing support, and I'm so happy you have each other. Thank you again for joining our community and for your encouraging message. God bless you and your wife with love, health, and happiness! Let’s keep supporting each other and sharing our stories.
@@tt_looking_glass Thank you so very much for reading and sharing your response to my recent comment. I just watched this video again, trying to focus and learn more the second time around. I live across Lake Ontario in Central New York State, and I hope that the recent fickle weather has not been as hard on you as it’s been on me. Thank you again for your kind and encouraging words. I’m glad to hear that you have strong support from your partner, and I pray that you live and flourish in the love and grace of Almighty God. Thanks again for using a lot (I’m sure) of your precious energy and time to share your story on this fine channel!
It's always a pleasure to read your comments and respond. I'm sorry sometimes it takes me a long time to reply. Comments often get lost in my TH-cam notifications. I can totally relate to the challenges posed by the unpredictable weather, it does seem to have a mind of its own sometimes! but I'm glad the weather is getting a bit more stable now. Yay!! Finally! Thank you for your kind words and prayers. Having support from loved ones truly makes a big difference, and I feel blessed. Your encouragement means a lot, and I’m grateful that you appreciate the effort put into sharing these videos. Thanks again for being a part of our community!
It feels like you're describing MY life. I still can't even get diagnosed. I'm a disabled Veteran and my doctors spend more time gaslighting me than helping me. I'm in tears watching your video. Everything you said rings so accurate & true that it's eerie. Thank you for sharing your story, you're inspiring. Be well. ❤
I’m so sorry to hear that you’re going through this, especially without a proper diagnosis. It’s incredibly frustrating and disheartening when doctors don’t take you seriously . Being a disabled veteran on top of that. Thank you for your service, and you deserve so much better care and respect. It’s heart-wrenching to hear that my story resonates so closely with you, but I hope it helps to know you’re not alone in this. We’re all in this together, and sharing our experiences can bring a bit of comfort and solidarity. Thank you for your kind words. Your strength and courage are inspiring, too. Sending you a big virtual hug and all the positive vibes I can muster. Be well and take care of yourself. ❤️
fibromyalgia, is like having the flu everyday of your life without the fever, and constant nerve spasms that goes through your body. FYI as you get older it gets worse and bundles up with all the rest of old age problems. what i find helpful is eating real food , green juices, red light therapy, sauna, and gentle stretching, and prayer. medication did not do anything for me, if anything it made me dizzy and you are dizzy to begin with. it's a hard life but you have to push ahead because you are alive.
You've really been through it with fibromyalgia, it's great you've found your own way to deal with it, especially since meds weren't your friend. Turning to real food, gentle stretching, and prayer instead of just relying on medications is very inspiring. It's like you're saying, "Yeah, this is tough, but I'm tougher." And even though fibromyalgia throws a lot at you, you're finding your own path to feel better and keep moving forward. It’s a powerful reminder for everyone dealing with their battles that finding what personally helps you is key.
@@tt_looking_glassYes Indeed, also look around with kids, and all people out there with cancer, in wheel chairs, when you see this you can say hey I will be kind to myself and take it a day at a time and just keep going.. Feel good and push forward God Bless.
Well presented. I am so glad that you touched on the fact that one doesn’t look sick, and as a result, one’s challenges are not taken seriously. I don’t discuss my conditions with people I don’t know well, but a number of times have been in situations where the conversation turns to “welfare” or people with “supposed” disabilities like fibromyalgia. The idea that because one does not look sick, one can’t be sick and is therefore “milking the system”, is all around us. I still struggle with feeling guilty and wondering if I’m fooling myself, and am taking advantage because I do miss some events that I don’t want to go to. I’m always questioning my “actual” motivations. I disliked my job so much, and had been granted FMLA (unpaid of course!), but never used it, because I knew I would be judged by my co-workers due to there already being another co-worker who was talked about behind her back, whenever she took a day off with FMLA.
Thank you for sharing your thoughts and experiences. It's tough when people assume that because you don't look sick, your challenges aren't real. This misconception is very hurtful. Taking time off when needed is a legitimate way to manage your health, and you shouldn't feel guilty about it. I'm sorry to hear about the challenging work environment. Your experiences highlight the need for greater understanding and empathy regarding invisible illnesses. My work environment wasn't very understanding either and as a result, I ended up having to leave.
@@tt_looking_glass I got lucky. The last two years making me eligible to retire, I had a very understanding boss. We worked 7 by 24. He would allow me to take breaks and go rest in the lounge if I needed. I also was working with a crew of understanding people the last year. The one guy who was ultra conservative and of “welfare queen” mentality, who I expected an issue with, had a sister-in-law who was mostly bedridden with fibromyalgia. He said how much he knew it took to come in everyday, and appreciated how hard I worked . He became the first one to help me out when there were physical demands with the job. I came to appreciate him overtime; not his views, mind. But his empathy
I hate this condition so badly! Living with this for the last 15 years, i have depression because there's a ton of stuff i would love to do and no longer can. The slightest touch, or even thoughts of it hurts extremely badly. I would love to go to an event or hangout with friends and then suddenly i can't because i hurt so badly. The forgetfulness, the fatigue, anxiety for fear of doing something that may cause intense pains if i do them, to not getting enough rest or cant sleep at all, then breaking down crying because the pain is bad that the only thing i can do is sit in a hottub for an extremely long time in hopes to calm the episode down, sometimes it helps, other times it doesnt . Sometimes the pain hurts worse in one area of the body and the other areas not so bad. Hate, hate when the weather changes ever so slightly because then it throws me into a Fibromyalgia crisis for the first few days. Especially when the weather gets colder or it rains. Fibromyalgia is diagnosed with trigger points, CFS doesn't have trigger points.
I completely empathize with you. Fibromyalgia is a relentless condition that affects not only the body but also the mind. The limitations it imposes can be incredibly disheartening, leading to depression and anxiety. I've been there too. A subscriber pointed out to me in a comment that trigger points are no longer needed for diagnosis. This change recognizes the complex nature of the condition, which involves widespread pain and other symptoms. I hope this broader understanding leads to improved support and treatments for individuals like us. Wishing you strength and resilience as you continue to navigate this journey. 🌼💪
What’s frustrating is that I have PTSD in part due to treatment from employers that I have been working through. Due to decades of living in survival mode, but body is rebelling. I’ve done the work to get rid of some of the emotional pain, but it’s hard to forget this and hard to have a job and quality of life due to the physical pain and fatigue
Hey there! Thanks for sharing your story. I'm really sorry to hear about the challenges you've faced with employers and the impact it has had on your well-being. Dealing with PTSD is not easy, and it''s understandable that the physical pain and fatigue makes it difficult to hold a job and maintain a good quality of life. You are not alone in this journey, I have had my share of trauma with employers. If you ever need someone to talk to or have any questions, feel free to reach out. Take care!
I have had a great deal of difficulty with working die to brain fog. I was an RN for 20 years. Now I don’t even know what I could do to support myself. Fortunately for now my husband is employed, but you never know when you will have to support yourself…🤷🏻♀️
I had beautiful long curly hair that I loved, it gave me confidence and I just felt so good about myself. Then, I got my first lupus flare. My hair started to fall out, its condition changed, and it looked dull. Also I started to sweat in ridiculous amounts and my hair would make it worse with overheating. I had to take a pair of scissors to my once beautiful long hair and cut it to the jawline. Of all the things that I've had to give up due to SLE, fibro, CFS the loss of my hair was a pivotal moment in my journey and I had to accept my old life was over. 13yrs later I try so hard to be productive but it's a daily battle with a very cruel illness. My only relief is in sleep, but I wish it wasn't so. Now being awake during the day is incredibly depressing because of the wasted time that I can't take advantage of. I'm typing this at 12.40am I'm fairly alert but feel so weak yet better than I would at 12.40pm. These illnesses are the antithesis of a normal life.
Reading your story truly resonated with me. It's incredibly hard when something so integral to your identity, like your beautiful curly hair, is taken away because of an illness. These conditions can indeed be relentless and change our lives in ways we could have never anticipated. The fact that you find some relief in sleep, yet struggle with the reversed day-night cycle, is challenging. Thank you for sharing your story, your experiences can provide understanding and comfort for others facing similar battles. Stay strong and keep pushing forward. Every day is a new chance, whether it's at 12:40am or 12:40pm.
Hi, I too have Fibromyalgia & thank you for your time talking about the struggles of living with it. My fibro started over 30 yrs ago. It took over five yrs & six doctors to get an official diagnosis. I wanted information on how to treat it so I called the CDC, they didn't know much about it at that time but I started researching it. I was working then but about Eight years later my doctor said I had to go to half days which I did but not long after I had to quit working altogether. I wanted to let you know that I did file for disability & was approved after over two years of being denied & mountains of paperwork. I was so blessed. It took a lot of time & patience but don't give up. I am now 73 yrs young & have two great doctors treating me. I have improved & never stop learning more & more. Ok you take care & never stop eating a healthy diet, rest well exercise, take vitamins & stay away from stress as much as possible. to quit my job
Hi there! It sounds like you've been on quite a journey with your diagnosis and finding the right treatment. Kudos to your perseverance and determination in researching and seeking information. It's unfortunate that you had to eventually quit working due to the condition, but it's great to hear that you were able to file for disability and eventually got approved after a long and arduous process. Your experience and advice are truly valuable, and it's inspiring to know that you have supportive doctors and that you've seen improvements over time. Thank you for sharing your story, and I wish you all the best on your continued journey towards well-being. Take care! ♥️
You’re absolutely right, fibro really is a disease that affects the mental, physical, and emotional all at once. It’s like this tangled web where all three are constantly interacting, and it’s impossible to separate them. I’m so glad this resonated with you, it’s such a complex condition, and acknowledging all the layers can be really validating.
Thank you so much for your kind words. It means a lot to hear that my content resonates with you. This invisible illness can feel so isolating, but knowing we're not alone and that we can support each other makes a big difference. I'm glad we can share this journey together. Take care and stay strong! ❤️💪
THANK YOU for mentioning hair and showering! I have curly hair that took decades to grow about tailbone-length (I'm 6'1" so that's a longer distance from my scalp than for many), and I love it long... but the last few years especially I've had SO much fatigue that I frequently look so greasy, and I hate it. PLUS I'd also love to exercise or take self-defense, but that requires more physical discipline than fibro will allow for.
You're very welcome! It's essential to address all aspects of living with fibromyalgia, including the challenges that might not be as commonly discussed. Your hair must be absolutely gorgeous, it's completely understandable that you'd want to keep it that way.
@FullMoonHowl and @tt_looking_glass -- I felt same about my hair for years. However, earlier this year I got it cut short of necessity (no energy to spare). I am delighted. It is such a relief. Washing is so much easier I do not dread it. Air drying happens much quicker. (It would be fast with blow dryer but I don't use one.) A good hairstylist makes a great difference. She is so gifted she seems to "get" my hair waves, curls, twists and "cow licks". Now I've had my third cut she just seems to get it better and better. What a relief!! Please consider to not rule it out adamantly. Saving strength is, for me, a good tradeoff. Plus people said it took years off my apparent age.
Wow! You said it so perfectly. I cried because you really spoke to me about how fibromyalgia has affected me. You make so much sense. I have both Fibromyalgia and ME/CFS. Thank you for being so open. Xxxx
I'm deeply moved by your comment, and I'm glad to hear that my words resonated with you. Living with Fibromyalgia and ME/CFS is incredibly challenging and support is Indispensable. Remember, you're not alone in this journey, and sharing our experiences and emotions can be a powerful way to connect with others who understand. Feel free to reach out anytime. You're strong and courageous, and I appreciate your kind words. Sending you lots of support and warm wishes! 🌟💕
Also I have spent most of my savings trying to find the right specialists privately. And I am now back at square one. What a waste of time and money. It’s like, no matter what you do, you’re in a dead end. Also, it’s hard because you worry your children won’t understand your illness and worry they think you are lazy and absent.
That is incredibly frustrating and disheartening, having to use up most of your savings searching for the right specialist, only to feel like you're back at square one. It really does feel like hitting a dead end, no matter how hard you try. And I totally get the worry about how your kids see you-it's tough when you think they might not understand your illness and might see you as lazy or not there for them. Keep the conversation open as they grow and I can assure you they will become very empathetic human beings. Hang in there. ♥️
I am turning 42 at the end of this year, married, five teenagers, and a career I adore. I too never exercised because of intense pain, fatigue, and flare up in Fibromyalgia, chronic fatigue, and other chronic illnesses I’ve been dealing with for more than 20 years. I purchased a MaxiClimber for $200 in a bid to become stronger and to build my stamina. Against all odds, I’ve stuck with it for nearly 8 months now. I have worked up to 400 reps every other day. I started with 25 reps. I minimize flare ups by skipping a day in between. Physically, I feel the same amount of pain and fatigue I would feel otherwise, no better, no worse, but I look great, and that makes me at least feel better in that aspect ❤ I HATE working out, btw!
Also, my husband and I practice intermittent fasting, which for us means we space out our meals. We eat whatever, just actual portion sizes 😂 I’ve lost 50 pounds in the past year and a half in another bid to lessen my pain and fatigue. It didn’t, unfortunately. My husband went from having diabetes to not having diabetes by fasting in this way.
Happy early 42nd birthday! It's amazing that you're balancing a career and five teenagers, all while dealing with chronic illnesses. Great job on sticking with the MaxiClimber and working up from 25 to 400 reps! It's good to hear that, even though the pain and fatigue are the same, you feel better about how you look. Losing 50 pounds and managing your health with intermittent fasting is impressive, too. Sorry to hear it didn't lessen your pain, but it's great that it helped your husband with his diabetes. You're really doing an incredible job looking after your health. ♥️
Sorry for my English,I'll try without spelling problem, Please explain about the eating you mentioned,the fast And about the exercise,I'm dealing with fibromyalgia for over 15 years,I'm trying my best as well as at the emotional aspect ( sorry English is not not my language) I spent so much money but I feel like nothing happened
YES I feel in a constant state of grief due to the loss of reliability......I have placed high value on reliability throughout my life so this is hard to accept! Yes your hair is in style and you look very beautiful in this video.
I completely understand what you mean about that constant state of grief. Losing the ability to rely on yourself the way you once did is such a hard thing to come to terms with, especially when reliability has been a core value in your life. It’s like mourning a part of who we were, and it’s something I struggle with too. Thank you for your kind words about my hair and the video, it really brightened my day. We’re navigating this together, one step at a time. 💜
You are a beautiful young woman. I have great compassion for you and understanding. I am 79 and was diagnosed in 1993. It has gradually worsened year after year. When I was diagnosed people/doctors were reluctant to believe it was a real medical condition. Since that time the list of symptoms has grown longer and longer but the treatment has not been found. I hope they find help for all sufferers of this horrid baffling debilitating disease . Will be thinking good thoughts for you. PS…I think stress was the main reason ..cause of my developing this syndrome.
Thanks so much for your kind words and compassion. It's really touching to hear from someone who's been living with this for so long. I can't imagine how tough it must have been back in 1993, especially when there was so much skepticism about it. It's frustrating to hear that even though we know more about the symptoms now, there's still no solid treatment. I totally agree with you, hoping they find some real help for everyone dealing with this awful disease. And yeah, stress seems to be a big trigger for a lot of people. I'll definitely keep your advice and experience in mind. Thanks for thinking of me, and sending good thoughts right back at you!
OMG the hair is spot on, I had very long hair (and depression) so I cut it all off myself. The water of a shower feels like a thousand needles hitting my skin. Now I'm more depressed because I cut my hair and I still can't wash it. You're spot on.
I totally get it! Hair and showering can be real challenges when dealing with chronic illness and depression. Don't be too hard on yourself about cutting your hair; it'll grow back. The important thing is taking care of yourself. You're not alone, and there are ways to make things more comfortable. Take care! 💙
I can relate to everything you just said I’ve been suffering for years and finally just got a diagnosis last week. I knew someone was wrong but these doctors make you feel like it’s all in your head which makes you get isolated and trigger anxiety and depression. It’s rough living with this and it take a lot of will power to keep on pushing through on a daily and try to stay true to your self and accomplish life goals but let’s be creative in creating a life that can support our condition and push through this ladies. I wish all of you all the best and my prayers are with you all! 😩❤️🙏🏾🙏🏾🙏🏾
I completely understand what you're going through, and I'm so sorry to hear about the struggles you've faced. Getting a diagnosis can be a relief in some ways, but it's also disheartening when you've been made to feel like it's all in your head. Your determination and willpower are truly admirable. Living with a chronic condition like this is incredibly tough, and you're absolutely right that it's important to be creative in creating a life that supports your well-being. Surrounding yourself with understanding and supportive people can make a world of difference. Thank you for your kind wishes and prayers for everyone going through similar challenges. We're all in this together, and your positivity and support mean a lot. Sending you strength and well wishes on your journey! 💪❤️🙏
I am reading these comments and as someone who is just now making the connections in my own health issues. I feel so much less alone after reading the struggles people are sharing that i can relate to. Also, this is the first time coming across your channel. And i just wanted to say i was thinking about how pretty your hairstyle looks and i couldn't even tell it was the "dirty hairstyle" 😂😂 Thank you for sharing your story, i have subscribed 😊
I'm really glad to hear that reading these comments has made you feel less alone in your own journey. It is so comforting to know that others have faced similar struggles and challenges. Thank you so much for your kind words about my hairstyle, and I'm glad you found my channel! 😄 I appreciate you subscribing and hope that you find the content helpful and supportive as you navigate your own health issues. Remember, you're not alone in this, and there's a community here to support you. Thank you for being a part of it! 🌟😊
Excellent video. The pain morphing into one, you’ll find me sitting in the doctor’s office with my eyes closed trying to concentrate on my right elbow (or whatever). I was diagnosed with fibromyalgia first then cfs, I did get Ross river virus in the middle of both so that was an added bonus.
I identify and live daily with everything you said. Thank you for bringing awareness. I've been suffering for 15+ years. Cannot work anymore bc I'm afraid I'd get fired for not accomplishing enough. Most people don't understand any of it. People tell me to get up and move more, exercise, like it's just a little arthritis. If I could, believe me I would. I treasure the days that I can do more but I always end up pushing myself over my limits and then I pay for it in spades for days or weeks and can't get out of bed. I can't find a Dr to take me seriously or not offer me the same things over and over that have side effects worse than the symptoms let alone the withdrawals of going off them. I am alone with no family. I have a 94 yr old mom who tells me constantly how unreliable I am, even though I came to help her for a couple of weeks as I do every few months and saw her struggles and I decided to stay to help her and have not gone home in 7 months. I feel like I have no quality of life and I am only 66. It's very upsetting to cope with this, especially with no real support system. So thx again for making me feel less crazy. ❤❤❤
Oh my heart goes out to you. 💔 I can feel the weight of what you're carrying, and it sounds like you've been through so much, especially with feeling misunderstood and not having the right support. It’s incredibly tough when even doctors don’t get it, and pushing through, only to be set back, is something I know all too well. Like you, I’ve learned the hard way that people often don’t see the whole picture, or they simplify it with "just exercise" or "it's not that bad," when in reality, it’s so much more. I can't imagine the strength it takes to care for your mom while dealing with your own daily pain and the emotional toll of feeling unreliable. That’s a lot to handle, especially when you’re doing it without a solid support system. Please know that I see your strength in staying, in helping, in just getting through the days even when you’re hurting so much. You’re not alone in this, even though it can feel that way. I hope you can find little pockets of rest or self-care, and I’m so glad this video gave you a bit of comfort. It’s a reminder that you're not "crazy" at all, your pain is real, and you’re doing the absolute best you can. Sending you so much love and strength. ❤️❤️
Great video! Thank you! I’m about 20 years with fibromyalgia, Hashimoto’s and now inflammatory arthritis. Like you, my biggest struggle is being unreliable to myself and others. The other stuff I find ways to manage, but not being able to be there for myself or others is tough on the emotions, which can make things worse or cause an extended flare. It’s an endless cycle. Some days I can deal with it, sometimes not. I’m learning to be ok with this. It is what it is mentality. That does seem to help not to beat myself up over what I can’t control. I’ve also been to specialists and naturopaths and found some relief here and there, but flares return at some point with no rhyme or reason to why the flare began or what’s making it worse. It helps so much to know those of us with this are not alone. Being able to hear your thoughts and read other’s comments is so helpful in this journey. 💗💗💗
Thank you for sharing your experiences and insights. It's clear that you've been on quite a journey, managing your a hand full of health conditions. The struggle with unreliability, both to oneself and to others, can indeed be emotionally taxing and contribute to the cycle of flares. Acceptance and self-compassion can play a crucial role in managing these conditions. You're absolutely right that you're not alone in this journey. Finding support and a sense of community among others who understand these challenges can be a source of comfort and strength. Remember that your journey is unique, and it's impressive how you've adapted and learned to navigate through the ups and downs. Keep leaning on the support network you've found, and continue to explore ways to manage and improve your quality of life. Thank you for sharing your thoughts and experiences with us. ♥️
Girl!!! I am watching this in tears. It’s like you are recounting my own story and fears and struggles!!!! I hate that you have to go through that but it’s nice to know I’m not alone
Hey Michelle, I’m really touched that my video resonated so deeply with you, but I'm also sorry to hear that you’re going through such similar struggles and fears. It’s tough, isn’t it? Knowing that someone else understands exactly what it feels like does bring a bit of comfort, though. You’re absolutely not alone in this. Sharing our stories and hearing others say “me too” can be incredibly powerful and healing. It helps us feel connected and supported, even on the hardest days. Please know I’m here with you, and this community is here for you, every step of the way. Let’s keep sharing, supporting each other, and finding strength in our shared experiences. You've got a friend in me, Michelle. Hang in there, and let's face these challenges together. 💖
Wow! Thank you! That means so much to me. And your timing is perfect as I sit and contemplate how in the world I’m going to get from one side of today to the other. I know I will. However, it sucks that I have to plan how to walk to the other side of the room. That I can’t hold my four legged child on my lap because his little paws feel like knives. Knowing I will have to play “how many people can I disappoint today”. I don’t like that game. But knowing there are people out there who can come into my life, into my house, into my mind allows me to come at this day differently. It helps me be thankful that I have a beautiful and safe space to walk around in. It gives me the space to think of other ways to be with my fur baby that will be better for the both of us in the long run. Being thankful to have people in my physical circle that are close enough to me to worry that I have disappointed them. Does any of that even make sense? Your replay and encouragement means a lot. Thank you!!
Michelle, your words absolutely make sense, and you articulate the daily challenges so well. It's a feeling many can relate to when dealing with chronic conditions that limit daily activities. The fear of letting others down is overwhelming. It’s so tough to navigate the physical limitations and the emotional toll they take, not just on you but on your interactions with family and even pets. I’m truly moved by your ability to find gratitude amidst these tough moments. Thank you for sharing so openly. It helps all of us feel less alone. You’ve got a whole community here that understands and supports you. 😍
I needed this video. I can identify with everything you said. I'm going to share this with my friends to help create awareness. I try to articulate these symptoms, but I get overwhelmed with the amount of symptoms and the pain never, ever stops. Thank you. It is great to hear someone say what needs to be said.
I'm really glad to hear that the video resonated with you and provided some comfort. Sharing our experiences and spreading awareness about fibromyalgia is crucial, as it helps others understand the challenges we face. It's indeed overwhelming, and finding the right words can be difficult. Remember, you're not alone in this journey. Many people, just like you and me, are navigating the complexities of these conditions. Thanks for watching. Take care! 😊
Thanks for sharing your video. The exercise intolerance is a real issue for me. Age does seem to matter for me, too. I’m over 50. I have suffered undiagnosed for decades. Most days I feel nearly disabled from it but I’m finding my hope and help in Jesus. I may not be able to cry out to everyone around me but I can always cry out to the Lord since he’s always there.
Thanks for watching and for sharing your experience. Exercise intolerance is such a tough issue, and it definitely gets harder as we get older. I’m sorry to hear that you’ve suffered undiagnosed for so long, it’s heartbreaking when you feel nearly disabled from it all. Finding hope and help in Jesus is a beautiful thing. It’s comforting to have that unwavering support and someone you can always turn to. Sometimes, faith and spirituality can provide strength when everything else feels overwhelming. Keep holding onto that hope, and take things one day at a time. We’re all in this together, and your faith and resilience are truly inspiring. Sending you lots of love and prayers.
I get what you mean, it really is validating to hear that we’re not alone in these struggles. Fibromyalgia can make us feel so isolated, but knowing there are others who truly understand the ups and downs makes a huge difference. I’m so glad the video resonated with you! We’re all navigating this together, and sharing these experiences is such a powerful way to lift each other up. Sending you so much strength! 💜
I'm crying here. I have never heard anyone so thoroughly touch on the hardest things about having this illness. I feel so seen. All of these things are so, so true. Every single one is something I deal with. One big issues I have found with having Fibro is knowing when something IS, in fact, Fibro, or a symptom of something else. Should I be concerned about this pain? Is it new, or is it just another flare? I never know when something is a normal flare, or something I should be looking into. When do you go to the doctors, or the hospital? A few months ago, I ended up in the ER because I had severe shoulder pain, and I couldn't breathe without severe pain in my upper right quadrant/stomach area. I couldn't walk more than a few steps without my breathing being so laborous that I couldn't catch my breath. After an EKG, blood, and some Morphine (which didn't really take away the pain), they couldn't find anything wrong with me. They sent me home with some anti-spasmatic medicine. It took another almost week for it to go away, and I have no idea if the medicine they gave me helped, or the flare went away on it's own. It's so, so hard.
I can feel every word of what you’re saying. You are so not alone in this, even though it can feel like it sometimes. That constant doubt, wondering if it’s “just” Fibro or if something else is going on, can be so overwhelming. I totally get that anxiety about when to go to the doctor or the ER. It’s such a fine line, and it’s terrifying to be in that space where you’re in so much pain, but nothing seems to show up on tests. I’ve had those moments too, where I’m left questioning myself: "Is this something serious or just another miserable flare?" And the worst part is that uncertainty can leave you feeling so helpless, like you’re just waiting for the pain to pass and hoping you’re making the right call. You’re doing your best in an impossible situation, and that’s worth recognizing. It takes so much strength just to keep pushing through, especially when it feels like the world doesn’t understand what you’re dealing with. Thank you for sharing this, you’ve put into words something so many of us feel but don’t always know how to express. I’m so glad this resonated with you, and remember, you’ve got a whole community here that gets it. We're in this together. 💜
That list is spot on! It's so weird to hear someone know my exact thoughts . I know that list so well. Thanks for confirming that. Crazy me often think it's just my head creating these things. I feel like I can't trust what I think sometimes. It's so confusing. I'm beginning to understan it all more though. The doctors kept dismissing what I would try telling them for years. It finally got bad enough I knew it had to be fibro. A neurologist finally listened just yesterday and confirmed what I knew all along. So much time has passed with me trying for SSDI that I am no longer eligible. At most I can get just SSI which is an insult to try to live on. I would say the loneliness of it all is number 1 the worst.
I'm so glad to hear that the video resonated with you. It’s really validating to know it's not "just in your head," especially after such a long struggle for a correct diagnosis. I’m sorry to hear about the challenges you’ve faced with doctors and the frustrating situation with SSDI. The loneliness and isolation that often accompany chronic illness is incredibly tough. Please know you’re not alone in feeling this way. This community is here for you, to share in your struggles and support each other. Keep advocating for yourself and reaching out. You deserve to be heard and supported.
Thank you for the video and to all who are sharing their experiences. I’m 61 and have had fibromyalgia since my 30’s. It still amazes me all different symptoms and I question myself. So reading these comments helps me realize I’m not losing my mind. It’s very scary at times. Right now it’s the fibro fog. I’m convinced I’m going to get dementia early. The other thing is I attribute everything new symptom to fibro. Yes this disease comes with many symptoms, please don’t ignore a symptom if it gets worse. Better to have it checked and come back negative than to ignore something more serious. I’m still working and push myself to exercise at least 4 days a week. For me , if I sit too long, lay down too long or move too much I’m in pain. So I minus well exercise and get some benefits from it. Hang there and God bless you all.
Dorothy, I’m so glad the video and comments are helping you feel a little less alone, it’s such a relief to know we’re not losing our minds when all these random symptoms keep showing up! Fibro fog is so scary sometimes, and it’s easy to worry that it’s something worse, like dementia, especially with how unpredictable this condition can be. You're absolutely right about getting things checked out, though. It’s always better to know for sure than to ignore it. I admire your determination to keep exercising despite the pain, it’s a delicate balance, but you’re doing an amazing job listening to your body. Keep pushing forward, and don’t forget to give yourself grace. Sending you lots of love and strength! 💜
Thank you so much for the compliment on my hair! 😊 I appreciate your kind words about my videos. I understand how challenging it is to stay fit when living with fibromyalgia. It also gets harder as you get older. But remember small steps and consistency can make a big difference. Wishing you all the best on your journey to balance and wellness! ❤️
I have fibromyalgia and inappropriate sinus tachycardia (IST), which is POTS's cousin syndrome. I haven't heard the entire video yet, but so far i most certainly relate. I was only diagnosed a year and a half ago, but I''ve had fibro for at least 16 years and it's getting worse. You will get a new subscriber!
Thank you so much for sharing your story, and welcome to the community! ❤️ Fibromyalgia and IST together? That’s a lot to deal with. Having dealt with fibro myself, as well as SVT, I know how much it can mess with every part of your life. It’s amazing that you’ve finally gotten a diagnosis for at least part of your journey, even if it’s come after so many years of struggling. Having those answers doesn’t make everything magically better, but it’s such an important step in understanding what you’re dealing with and how to manage it. I’m so glad the video resonated with you, and I can’t wait to have you as part of this little corner of the internet. You’re not alone in this, and we’re all here to support each other. Sending you so much strength and love. ❤️
I needed to hear this so much today. I feel seen and you were able to put things into words that I have been struggling to explain to my spouse and family. Thank you for this!❤
I'm genuinely touched to know that my words resonated with you and brought you some comfort. It's not always easy to articulate our innermost feelings and thoughts, especially when we're grappling with complex emotions or situations. Remember, it's okay to have moments where we can't find the right words or feel overwhelmed by what we're going through. Sometimes, sharing a video can bridge that gap and help our loved ones understand our perspective better. Thank you for your heartfelt comment. ❤️
You just described my struggles to a T! I couldn’t believe how much I could relate to everything you spoke about, even the messy bun, which by the way, is the way I wear my hair all the time. I don’t think people realize just how challenging it is for us to do things as simple as, like taking a shower and doing our hair. It can be so painful and completely exhausting. Aside from the pain and constant exhaustion, the worst part for me, is having people judge me and not being able to fully understand what I go through on a daily basis. It has such a horrible effect on your mental wellbeing. 😔
Tina, I get it. I really, truly do. ❤️ It’s those “little things,” like taking a shower or doing your hair, that people don’t realize can feel like climbing a mountain when you’re living with chronic pain and exhaustion. The judgment from others, though, that’s the part that stings the most. It’s so hard when people can’t see or understand what’s happening behind the scenes. It really does mess with your mental health. I’m so glad my words resonated with you and helped you feel seen. You deserve kindness, patience, and compassion, especially from yourself. Sending you so much love and strength to keep going, messy bun and all.
You're right, it is definitely a full time job trying to look after your health. I think it's a good idea to write everything down like who you are speaking with and what they say.
Taking care of our health really does feel like a full-time job sometimes. Keeping track of everything can get overwhelming. Writing everything down helps keep things organized and ensures you don't forget any important details. Take care and keep pushing forward! 😊💪
Thanks so much for your kind words about the video! I totally get what you're saying - it's really tough when people misunderstand and think you're just being lazy. Fibro can be so unpredictable, with good days and bad days, and it's frustrating when others don't see that you're actually doing your best. It's important to remember that your worth isn't defined by how much you can do. You know your body and its limits better than anyone. Keep celebrating those better times when you can do things, and don't be too hard on yourself during the tougher moments. Hang in there!
I’m 22 and only just got diagnosed. My doctor told me that it’s not likely to get better going forward, and it’s so hard to come to terms with. I’m in pain, I’m exhausted, I can’t even go to the grocery store for fifteen minutes without needing to lay down and recover. So few people my age understand when I tell them I’m simply hurting. I’ve cancelled dozens of classes or adventures, slowed down friends, changed plans just because it’s so taxing. And she’s telling me that it’s more likely to get worse than better? I’m trying a medication that’s supposed to help, but the side effects are so rough on me. I’ve had cold-like symptoms every other week and I’m being told to just wait it out. This has been hard for me to come to terms with.
I'm really sorry to hear you're going through this. Getting diagnosed at 22 is tough, to say the least. It is very frustrating and exhausting to not even be able to do simple tasks. It's very isolating when people around you just can't grasp what you're experiencing. Hearing from your doctor that things might get worse rather than better is a lot to process, and it's totally understandable if you're finding it hard to come to terms with. It's okay to feel upset or angry about it. It's a big deal, and you're allowed to have all the feelings you're having. On top of that you are dealing with side effects. It's one thing to try and manage the condition itself, but when the treatment makes you feel unwell in other ways, that's another layer of difficulty. It's important to give yourself credit for the strength it takes to keep searching for something that helps,. Even though it's hard, you're doing everything you can right now. It's okay to take things one step at a time and to give yourself permission to rest when you need to. I know the future is uncertain but you are not alone. There are communities and support groups out there full of people who get what you're going through. Sometimes, sharing your story and hearing others can make a big difference in feeling understood and finding new ways to cope. Keep hanging in there, and take things day by day. ♥️
Everything is a struggle ..even getting diagnosed..told for years the symptoms where all in my head. The pain is horrendus..the brain fog is terrible but the FATIGUE is a horror story.
When you said it in it self was a full time job it made me tear up idk why maybe it was nice to finally hear someone else acknowledge that it is a lot of work to manage a normal mundane life with fribromyalgia and the amount of people that either want to say oh yeah I have that too when they obvioulsy don't or the amount of people that just simply don't understand why you have to cancel on them. Do you ever get frustrated with friends trying to help you when you know they can't. I have a lot of all natural friends that are constantly talk about all this food and workout stuff that I just simply can't do and they think that if I do them I am magically gonna get better after 20 years of dealing with this disease. today and for the last 2 weeks ive been waking up not being able to rotate my arms without sever stabbing pain and it hinders everything even fun or relaxing things
I completely understand , and I'm glad my words resonated with you. Living with fibromyalgia is indeed a full-time job, and it's not something that's easily understood by those who haven't experienced it firsthand. It can be incredibly frustrating when people dismiss the condition or offer well-intentioned but unrealistic advice. Many of us have friends who mean well but may not fully grasp the complexity of fibromyalgia. The pain and limitations you're experiencing, like not being able to rotate your arms without severe stabbing pain, is incredibly frustrating and affect all aspects of life, including the things that are supposed to be fun and relaxing. I get those symptoms off and on too. You're not alone in these feelings, and it's okay to communicate your boundaries and limitations to your friends. Finding ways to connect with others who understand your experience, like support groups or online communities, can be comforting and provide valuable insight and empathy. Thank you for sharing your feelings. You're not alone on this journey, and there are others who genuinely understand the challenges you face. 🌼💪
The constant aches, near permanent nausea, the random spikes of pain that pulse for minutes I hate but the worse seems to be my smell. Can’t stand certain odours to the point of vomiting when I’m hit with them . Canola oil is the worst when used for frying. So glad it’s reconsidered in Australia as a disability.
Hey Geoff! I hear you on all of that, the constant aches, the nausea, and those awful random spikes of pain are brutal. The sensitivity to smells is such a tough one too, especially when it hits you out of nowhere. It’s good to hear that it’s recognized as a disability in Australia. Having that acknowledgment can make such a difference in getting the support and understanding we need. Hang in there, and know that you’re not alone in this. Thanks for sharing your experience, and take care! 💜
you hit most all on the head! I'm sorry to hear anyone going through the same things as me but it's also good to hear it. Thank you! Be in a soft safe space and rest!❤
Thanks for reaching out and connecting over our shared experiences. It's bittersweet, isn't it? Knowing others are going through similar struggles is tough, but there's also a comfort in not being alone in this. Your reminder to be in a soft, safe space and rest is right on point. We all need that gentle nudge to take care of ourselves amidst the chaos. I appreciate your support and am glad the video resonated with you. Let's keep supporting each other and spreading that understanding. Take good care of yourself! ❤️
Thankyou for sharing with us. I for one have lots of similar problems as you with this difficult condition.I send you my love and laughter is my chosen medicine so I watch funny cats n dogs online.I worked as a supply teacher as I get to say can't go or can go to work. Medically it's when the brain keeps rejecting the pain Signal so,like a road hammer effectit presents as pain,❤❤❤
Chloe, thank you so much for sharing! I completely relate to what you’re saying about how the brain just won’t let up with that pain signal, but I love your attitude! Laughter really is amazing medicine, and funny cats and dogs definitely help bring those much-needed smiles. Sending you so much love right back. ❤️❤️
Oof its nice to hear you and others talking about it in the comments, nice to know im not going crazy and making up my symptoms and thats others suffer with this too
I'm sorry to hear about the challenges you're facing with your pain, and managing your symptoms. It can be incredibly frustrating when doctors dismiss symptoms as growing pains, especially when they persist and affect your daily life. Experiencing increased pain and fatigue after exercise or prolonged standing is a common symptom in conditions like fibromyalgia, chronic fatigue syndrome and POTS. It's important to listen to your body and find a balance between staying active and not overexerting yourself. Gentle exercises, such as stretching or low-impact activities, might be more manageable and help maintain your physical well-being without exacerbating your symptoms. Having additional health conditions like IBS can further complicate things and add to the overall challenges you're facing but they commonly go together with fibromyalgia. Regarding your suspicion that your symptoms worsened after being diagnosed with celiac disease, it's possible that the management of celiac disease, such as dietary adjustments, can impact your overall well-being and potentially affect fibromyalgia symptoms. It's worth discussing this with your healthcare provider to explore any potential connections or strategies for managing both conditions simultaneously. Keep advocating for yourself and seeking the help you need. Remember, you're doing your best despite the challenges you face.♥️💪
This is a great video that communicates exactly what I experience with fibromyalgia, POTS, and other chronic illnesses. 💜 I'm all for the messy bun! I wash my hair 1 - 2 times a week, dry shampoo (non-aersol) & messy buns are my friend.
Thanks so much, Dawn! I’m glad the video resonated with you, it’s comforting to know we’re not alone in this. And yes, messy buns and dry shampoo are total lifesavers, right? 🙌 . It’s all about finding those little ways to make things easier when we need it.
I'm really glad to hear that you connected with the video on such a personal level. It's great when you come across content that just hits home, isn't it? It's like finding someone who speaks your language and knows exactly what you're going through. Feeling seen and understood is a powerful thing, especially when dealing with Fibromyalgia. It's like a little ray of sunshine on a cloudy day. Thank you for sharing your appreciation.You've got this! 😊🌟
AMEN!!! I cried alot while watching this video. I covered my hair for years because it was so hard to wash. NO.11 for me is that my Thermostat doesn't work... especially for the extremities (hands and feet). My body can not bring the temperature back up (once the facia is tight). THANK YOU KINDLY.
Hey Renee! It’s such an emotional journey dealing with all these challenges, and I’m right there with you. Covering your hair because washing it was too hard. I’ve been through similar struggles, and it’s so validating to hear I’m not alone in this. I usually just end up braiding it or putting it up in a bun. My thermostat is also all over the place, especially with my hands and feet. Sending you a big, warm hug. 💖
This video is absolutely fantastic.You are describing me. It is all so true and it makes me feel less lonely. I hate it that other people just don’t understand and not being believed is absolutely the worst! Being totally crippled and then questioned and told it is stress or hormones. You have highlighted all the terrible problems in society if you have an invisible illness. People shun you if you talk about it - they think you’re trying to get away with not working 😢
I'm so glad to hear that the video resonated with you and made you feel less alone. It's incredibly tough dealing with an invisible illness, especially when faced with disbelief and misunderstanding from others. The frustration of not being taken seriously, being questioned, or having your symptoms attributed to stress or hormones is a common and painful experience many of us share. Highlighting these issues is crucial because it sheds light on the societal challenges and misconceptions surrounding invisible illnesses. Thank you for sharing your feelings and for your support of the video. It's messages like yours that show the importance of these conversations. Let's keep supporting each other and spreading awareness. 💖
At least you still have hair. My thick locs are now thin strands. I flare often but keep trying despite many down days. Yes its frustrating but I too refuse to give in. Its been 40 years and gets harder with age and more symptoms seem to arise. You don't understand unless you live this life. You described it perfectly.
Wow, 40 years of pushing through, you're such a warrior! It’s so tough when our bodies change in ways we didn’t expect, like your hair, but your resilience is incredible. I can totally relate to how frustrating it is when new symptoms keep showing up, but like you said, we refuse to give in. It’s true, no one really gets it unless they’re living this life, but we keep going, don’t we? Thank you for sharing your strength and for reminding me that we’re in this fight together. Keep holding on, you’re an inspiration!
This has been one of the best videos regarding Fibromyalgia. Thank you! I am in the UK and although we have the wonderful NHS, I am still going to see an alternative doctor, called functional medicine. I feel so sad for my husband having to see me like this.😢
Hi Sarah, Thank you so much for your kind words about the video. I'm glad you found it helpful! It means a lot to me that it could offer some insights into dealing with Fibromyalgia. Seeking out a functional medicine approach sounds like a proactive step, and I hope it brings you some relief and new perspectives on managing your symptoms. I understand how hard it is to feel like your loved ones are affected by your health struggles. It’s clear you care deeply about how this impacts your husband. It’s okay to feel sad about it, but also know that your strength and courage in facing these challenges are incredibly admirable. You're not alone, and this community is here to support both of you through this journey. Thank you for sharing your experience, and please keep us updated on how things go with the functional medicine doctor. Sending you both lots of strength and support. 💖
You're absolutely welcome! I'm really glad to hear that you found the video relatable and comforting. It's incredibly important to know that you're not alone in facing the challenges of living with fibromyalgia. Connecting with others who understand what you're going through can provide a strong sense of support and validation. Wishing you strength and resilience on your journey! 💪♥️
Spot on with all the struggles 👍💯 I think the one I dislike the most is being unreliable and stuffing people around. Thank you so much for your video 😇
I totally get what you mean about feeling unreliable, it's one of the hardest parts of dealing with chronic illness. I'm glad the video resonated with you. We all do the best we can, and it's important to be kind to ourselves. Thank you for watching!
First, love the bun, kinda regret bobbing my own hair now. Second... long bob cut, without bangs, gives the best trade off between ease of care/styling potential
Yes, I hear you. I love bangs but they are so high maintenance. I have been keeping my hair just straight long. No layers, no cut and I find the easiest for styling. Not so easy to wash and dry do to the length but the length also keeps it straight, so there is that.
Worst symptoms: waking up every day pain free for the first 5 minutes then in immediate agony and unable to get out of bed. Also: sudden noises. An unexpected doorbell is like being electrocuted. I had a spinal injury and have been wheelchair bound for 22 years. I had symptoms of fibromyalgia for my entire life. I was fortunate in that I was taken seriously when it got much worse and diagnosed with fibromyalgia in 2019 aged 43 by my GP and then confirmed by a Consultant rheumatologist. My heart goes out to anyone diagnosed with this condition. Your hair looks fabulous by the way. I also have very long hair and it’s very thick. I wash mine 2-3 times a week. Yes it’s a major challenge but so worth it. I’m in Scotland and it’s freezing here to! Thank you for your amazing video x
Ugh, that sudden pain after those first few minutes of peace is the absolute worst! It’s like your body teases you for a split second, then bam, back to the grind. And don’t even get me started on sudden noises-they legit feel like electric shocks. I flinch so hard at something as simple as a sneeze. It’s amazing that you got taken seriously with your diagnosis, but 22 years in a wheelchair and dealing with fibro symptoms your whole life? That’s a tough road. Also, thank you for the hair compliment! I totally feel you on the long, thick hair thing-it’s a whole task by itself! Sending warmth from here and a big hug 🤗
Thank you so much for subscribing, and I'm glad to hear that my video resonated with you.. Living with such health challenges is incredibly tough. But so are you. 💪♥️
My new family doctor is fresh off of residency and said fibromyalgia can be tricky and has many symptoms. I also know that the progressively worsening neuropathy is something else completely. Hence, the need to see a neurologist again. Pain and explaining how it feels is difficult. The pain scales are tricky. I still work full time, but I drag my ass around often just to get stuff done. The fatigue,back pain, neuropathy, memory/comprehension, focus, and more. The anxiety and depression is so real. The mild dose of a antidepressant helps with sleep and keeps me from falling apart at work, rather falling apart easier/faster, like total meltdown. I'm so sick of being sick. I'll keep working until I can't do it anymore, and then hope my works disability will be enough.
I'm really sorry to hear that you're going through all of this, it sounds incredibly tough. Managing fibromyalgia, anxiety and depression, is no small feat. Your determination to keep working despite the challenges is admirable. It's great that you're seeking medical help, including seeing a neurologist. Remember, it's okay to ask for help and take it easy on yourself. Finding moments of laughter even in the midst of all this, can be a powerful coping mechanism. Stay strong! 😊
Thank you so much for listening (again!) That means the world to me. 💛 I'm so glad the words resonate with you. Living with fibromyalgia can feel so isolating sometimes, but knowing we’re not alone in this makes all the difference. Sending you a big, gentle hug. ❤️
I feel like I'm running a fever alot. Achy legs and bones in my legs kill me. Upper back achy. Bloated, creepy crawlies, feet and hand pain. Neck pain, wrist pain. I also have osteoarthritis all my fingers are knotted. Hips hurt. My fingers hurt everyday and the bottoms of my feet.
I hate the feeling of running a fever! I feel the way you described when it rains or any big weather changes for that matter. Everything hurts. It feels deep in my bones.
Sorry you have all those symptoms @Sand. I get the creepy crawlies too-I think that's the fibro for me.
I forgot about this one. Smells are a big thing with me. I get nauseous very easily. I smell things nobody around me can smell. Lol Dizzy spells a lot. I take motion sickness medicine when I’m feeling this way and it helps.
@@sandyandies8309 yes, I smell things like nobody else can too. People think I’m crazy!
Sounds like my life
You were an incredible communicator of some of the major problems I had with Fibromyalgia. I really hated to disappoint so many people by being unreliable. I had Fibromyalgia for about 8 years and some medications helped me be able to work. However my company switched my hours to the late night shift by myself in a place that can get critical fast. This switch caused such stress that my brain fog just took over. My husband and I agreed it was time to retire. I was 62.
I remember many Sundays I would shower, fix my hair and then get right back in bed exhausted. So many people just can imagine or believe that you are not faking or lazy. I pretty much became a hermit. Please be careful with medications! I just kept adding strong addictive meds until I almost went crazy! With help from a new doctor and my daughter I was able to eliminate many overpowering drugs. My body and mind are much better at 70 years old. I now am gentle with myself and gradually rendering society. May God bless anyone with this painful, depressing,mind stealing and heartbreaking syndrome.
Thank you for sharing your personal experience with fibromyalgia. You have faced so many challenges and had to make tough decisions regarding your work and lifestyle due to the impact of this condition. It's unfortunate that many people struggle to understand the reality of fibromyalgia and may doubt its debilitating effects.
Being cautious with medications is a very important point you made. Finding the right balance and working closely with healthcare professionals is essential to manage symptoms effectively without relying solely on overpowering drugs. It's inspiring to hear that you've made progress in this regard and that both your body and mind have improved as a result.
Living with fibromyalgia is a painful and isolating experience, and it's important to be gentle with yourself and prioritize your well-being. Your journey and resilience serve as a testament to the strength and determination required to navigate this syndrome. May you continue to find healing and support as you gradually reintegrate into society. Sending you warm wishes, and may you be blessed with better days ahead. 🙏
Hi barbbaily, you said had fibro, so are you all better now? What did new doctor do to help with pain? I am 65 and yes pain has gotten worse over the last 30 years. In the beginning it was just a bad week like once a month no big deal. Nowadays I can't remember my last good day. I have fibro and Lyme disease plus gastric issues so if it isn't one thing it is another. And hate disappointing people but they have dropped me like a hot potato. She is always sick why bother to ask, I get it but it hurts. Wish for someone just to sit with me and watch a movie. Quit Drinking that is another good way to become a hermit. I really wish I could find someone to go to town and do my grocery shopping. Such a long drive to town, I should move to town I know. But how ? takes energy to sell a house pack a house, and find a new house. Need a handyman too. my house is falling apart. I pay but seems nobody wants to do handyman jobs. I just have to take it all one day at a time. Depressed due to pain, was not depressed before pain. how do you get a doctor to understand that small detail?
I am going to be 60 in the fall 🍂🍁🍂 it is my favorite time of year I make it my happy place even if I'm feeling like a hot mess! But I'm also getting to the point in my age that I'm feeling too old to keep doing this it's been since 05 ☹️ I also have Parkinson's RA Sjogren's and Lewy Body Dementia
(think Robin Williams)
My rheumatologist has me doing PT and besides daily Bible reading I've started counseling for learning how to do coping strategies aging is different on the brain 🧠 I find and I stress over my house falling apart too I live in a small town where nobody wants to do personal care in home service
Maybe my comment might help someone I don't know but there is hope we are never alone 🙏🥰 just keep swimming 🐟
This might sound morbid but I know that I have a limited time before it takes everything off me and leaves me a constant ball of pain one day.
If it gets to that I would seriously look at calling the game. There are a couple of states in Australia that give you an option to end your life with dignity if you are in that position.
But that’s going to be my choice at the time, others would think differently but that’s why we are human
@@geoffgunn9673I completely understand, but please don’t do that. First of all, it is a grave sin before God, because he created you and is the only one that should take your life. Secondly, it could keep you out of heaven. I don’t know if you’re a believer, but cling to Jesus, and pray. There is a reason we have this. You can offer your sufferings up to God, untied with the Cross of Christ, to help others, like a prayer. Jesus didn’t die for nothing, but to save us from hell.
It’s also a very selfish act, in that it hurts the people that love you. Just recently, my 23 year old son came to me and told me how I had said, when he moved out, that I had nothing left to live for and might as well get it over with. It really upset him greatly. It’ s been 2 years since he moved out and he was crying telling me this. I said it stupidly when I was on prednisone, which makes you crazy, and my pain was thru the roof. I need to be more careful as to what I say. I didn’t really believe I’d do it, but he did!
I suggest you find a psychologist or therapist, and/or support group, and also a pain doctor. There;s a support group online for whatever you have, called ‘Patients Like Me.’ There are also medications you can try. Morphine ER has made my life better. I used to be crying in bed everyday from nerve pain. It’s never going to be great, but it can improve. Also, see about high dose Thiamine therapy (B1). There’s a nutritionist on TH-cam called Elliot Overton who has used this protocol with success for FM. His channel is EO Nutrition. I’m trying it right now. I’m also doing the Carnivore diet, which has healed many people. It’s difficult, but possible. So, please don’t give up. I’ve been through a lot of pain, depression and anxiety for years. I’ve had more a pain than most people will ever have in their life from many diseases, so I really do understand. The future is scary, but we don’t even know the day or time God will take us. It may be sooner than you think and most likely from something you’d never suspect. Let our creator decide when it’s time. Trust in Him. Please get some help! I will pray for you. God bless and help you🙏🏻❤🙏🏻
.... Pretending to be fine at work, because of being afraid to loose the job. Being afraid of not coping with the job every day and days in advance ... will I manage next week? ... Doctors saying: "Okay, this is not an emergency, come in next week ... . " Being afraid of the coming night: "Will I sleep better this time? I'm so tired..." Waking up and not going back to sleep for hours and you know, you have to get up and work... .
I hear you. The struggle to balance work, health, and the constant uncertainty is tough. Pretending to be fine at work when you're dealing with health issues is a heavy burden to carry. I know it too well. I hate nights! The stress that you need to sleep and rest only lead to more insomnia and more stress. It's viciuos cycle.
I'm sending you strength and positive energy during this tough time. 💪💕
I feel this. It's where I am right now
I almost lost my new job after finishing school- prior to getting a diagnosis when I finally did I was able to get a written letter stating I had a medical condition and my job has been more flexible. However I may apply for intermittent medical leave because I still struggle some days
@@tt_looking_glass Have you ever tried taking a sleeping aid like Ambien? That’s the only way I can sleep.
@@suew4609 I do take a sleeping pill called Imovane (or Zopiclone), and it does help. It’s the only way I get any sleep.
One aspect I experience with fibro that I do not hear others talk about is medical uncertainty. To be more specific, when to attribute a problem/symptom to fibro and when to recognize it as something more serious or worthy of a visit to the doctor. I have had a new issue arise only to find out there is no evidence of anything concerning, but I have also ignored a symptom (new pain) only to find out it was not fibro-related and I should have sought medical intervention sooner.
Absolutely, that is a very valid concern. I can definitely understand the medical uncertainty you experience with fibromyalgia. It can be challenging to differentiate between symptoms that are related to fibromyalgia and those that may indicate a more serious underlying condition. It’s so easy to downplay or dismiss symptoms as being solely related to fibromyalgia when they may actually be indicative of another health issue.
Living with fibromyalgia means navigating these uncertainties and finding the right balance between self-awareness and seeking medical attention. Remember that you know your body best, and it's important to trust your instincts. It's essential to strike a balance between self-monitoring and seeking medical intervention when needed but when in doubt, seek help.
I've experienced that several times.
@@irenethomas5324 It can be very frustrating.
So true. Whenever something new comes up I need to give it time to make sure that it's either Fibro out something else.
This! So many times!
Watching this video early hours of the morning as once again woken up by my pain. I get severe pain in the centre of my back that radiates around my ribs and I feel like I’m having a heart attack. Just one of the fun symptoms of chronic pain. 😢 30 years + of all this and so so tired. Thank you for this video, it helped me tonight.
I’m so sorry you’re going through this, it’s absolutely exhausting to be in that kind of pain, especially when it wakes you up in the middle of the night. You are so strong for enduring it, even when it feels impossible.
I’m really glad this video gave you some comfort tonight, it means so much to me to hear that. Please know you’re not alone in this. We’re in this fight together, even on the hardest nights. Sending you so much love and strength right now.
after watching your videos i finally feel like someone really understands what i'm going through..
I’m so glad my videos have helped you feel understood. It’s so important to feel seen and heard, especially when dealing with something as isolating as chronic illness. Knowing that my experiences resonate with you means a lot to me, and I’m grateful we can connect in this way. Remember, you’re not alone in this, we’re all in it together, supporting each other every step of the way. Take care, and thank you for being here. 💜
Thank you!
Yes, I loved you saying I feel "shitty" most of the time. I have had this fibro crap for over thirty years. Nobody knows what shifty effect it has on your body and family.
I'm glad my words resonated with you. Fibromyalgia indeed makes you feel "shitty" most of the time, and it's challenging for anyone who hasn't experienced it to truly understand the impact it has on our life and our loved ones. Living with this condition for over thirty years is a testament to your strength and resilience. Remember, you're not alone, and there's a community of individuals who understand what you're going through. Sharing your experiences and insights can help raise awareness and provide support to others facing similar challenges.
@@tt_looking_glassYep,it feels “shitty” alright! Sometimes I wish the unbelievers would have to experience it for a month at my worst, just so they’d understand and stop blaming me, or saying I need to try more. It would be a revelation to them!
This is so painfully accurate! It truly is a daily,vsometimes hourly struggle. Dealing with doctors is the worst. I've just come to the conclusion nobody is going to understand, except those that have it. Thanks for sharing.❤
Thank you for sharing your thoughts. It truly is challenging, and I'm sorry you've felt this way too. Navigating the healthcare system and trying to find understanding and empathy can be disheartening. But, as you mentioned, there's a unique bond among those who experience it firsthand. This community understands deeply, and it's comforting to know we're not alone. While it might be tough for others to fully grasp what we go through, your feelings and experiences are valid. Stay strong, and remember we're here for each other. Sending you warmth and support. ❤️
So, true! There is a community online called, “Patients Like Me” where you can find people who have your diseases, and share. It can be helpful to find other ideas to try or at least you can rant and everyone understands. We all need to sometimes!
I usually take a bath to wash my hair. I can also soak my legs in the hot water. I always brush my teeth first as I am usually too exhausted to do it after being in the hot water.
Yes, sometimes I do it in the bathtub too but the heat makes my POTS symptoms worse and I feel very exhausted like you mentioned and then I have no energy to dry my hair. I can’t go to bed with my hair wet as I always get a sore throat.
Yes hot water people do not realize showers feel like little needles pricking you not all of the time but it can so it's just easier to take a bath.
Girl, you are Not alone! I’m setting here, listening to you as IF you’re talking about me!!😮 I’m diagnosed with SLE Lupus, Fibromyalgia, Mix Connective tissue inflammatory disease. So I’ve been through everything that you are talking about and more… My only ever and ultimate help is my Faith in Jesus. I’m so Grateful that in my weakest moments, He is with me to give me strength to carry on. I’m Praying for you all my Sisters.🙏 Shalom.
Thank you so much for sharing your thoughts and experiences. It's incredible how many of us living with chronic illnesses can relate to one another's struggles. Your faith in Jesus is undoubtedly a tremendous source of strength, and it's heartwarming to see the support and prayers you're offering to your fellow sisters going through similar challenges. We're all in this together, and your positivity and kindness shine through. Shalom to you too, and may you continue to find strength and support on your journey. 🙏💕
Faith works like a charm
Anen
I am a man and i suffer with this bad condition, but the worse part is it gets worse with age, my prayers go out to all with this horrible condition, thx matt P S your hair looks fine..
I'm sorry to hear that you too are dealing with fibromyalgia. I am also finding it is getting worse with age. I know it is not considered a progressive condition but for me being close to 50 and perimenopausal has created havoc in my body and my fibromyalgia has taken the ride.
I hope you find my videos of value and I would love to see you around.
Thank you for your kind comment about my hair as well. Take care, Matt!
You're right! It does get worse as you get older! I have two disabled sons in their 30s, and I do everything for everyone! I'm so tired. Some days, I can barely take care of myself, let alone 2 dogs and a house plus the boys!!!! Now I need a knee replacement! HOW???? Good luck. I no longer have any friends I hope you do!!!
I'm also finding it getting worst as I age as well. However I find If I exercise daily for 3 hours, it helps tremendously, and the pain lessens. At first it was extremely hard to exercise, then it was easy. However I stopped during the c word pandemic, so now I'm having a hardtime getting back on track. However slowly working back up to where it's no longer bothering me as severely. I refuse pain management because I'm a nurse and I want to continue to work as I can
It doesn't have to get worse with age!
Mine got better. I space and lace and cleaned up my diet and it's made a HUGE difference
Thank you Matt😢
I can resonate with everything you say… the nervous system is on hyper alert which makes it difficult to navigate social situations. The frustration of not being able to fulfil my physiological needs is a real issue… the physical and the mental is not conducive to achieving my personal goals. 😢
I totally get you. I hate how when I'm in a bad flare, I let go of personal care. Which makes me feel awful both physically as well as making me feel unattractive and dirty. And that is just in the moment, then there are the long-term goals and dreams that never happen because of our bodies determination to stop us.
As a 24yo male student, everyhting you listed is true 100%
- Being Dependant -> sometimes you just can't
- Not being believed -> thanks for that, with my diagnosis its not a problem anymore
- Being Unreliable -> non constant flares
- Lack of Energy -> impact on mood
- Can't be as fit -> frustration
- Pain all the time -> Limit your plans and impact on mood
- Unpredictable symptoms -> can't do what you want when you want
- Lack of medical research in the field -> not specialized medication that helps really
All of this has such a huge impact on your mental and it feels like you're not living anymore but just a spectator.
I just wish I could disapear, being in constant pain is like living in hell and I don't wish it on my worst ennemy
Thanks for this video, to all my fellow sufferers, I love you, you're strong and never give up, sometimes you have good days and they probably worth living for.
To those who have an affected loved one, please cherish and love them, help them when in need it would change their life forever and they would never be able to pay back
It's incredibly tough dealing with the unpredictability, the pain, and the way it seeps into every aspect of life, making us feel more like an observer than a participant.
Thank you for sharing your thoughts and feelings with such honesty. You remind us of the importance of compassion, understanding, and never giving up. Let's keep supporting each other, celebrating the good days, and finding strength even on the hardest ones. Sending you love and support. ♥️💪
@@tt_looking_glass Thanks you for that amazing answer, I wish you all the physical and mental strenght you can get
Have you tried cbd oil at all? I find that helps me tolerate everything enough to somewhat function
@@geoffgunn9673I have tried CBD several times, it did nothing for me. I’ve even tried marijuana, with no luck. The edibles make me sick. Some people swear by CBD, so if people haven’t tried it, they should at least give it a try.
Your post hit home hard! The part that you say, “you’re not living anymore, but just a spectator” is so true it got me teary!😢 And, it is a living hell I wouldn’t wish upon my worst enemy! Though, at times I wish my family would experience it for just a month at its worst, so they would understand better and stop blaming me for something I have no control over. Have you ever tried an opiate? My nerve pain was horrific. I would lay in bed crying almost everyday for years, and I was on Opana. I finally told my doctor it wasn’t working, and insisted we try something else. Extended release morphine has actually helped the nerve pain enough that I’m out of bed more and don’t think of doing myself in anymore. Here and there I have a really bad day, but it’s not daily anymore. It’s so hard to find what helps, as we’re all so different.
If you’re a Christian, may I suggest that you offer your pain up to God, united with the cross of Christ, as a prayer. You can help save souls that way, or help others offering it with an intention. It doesn’t lessen your pain, but it gives your pain some meaning. May God bless you with better days❤
The struggle is real. I can relate to everything you said. There is also the insomnia and restless legs. The waking up and feeling like you never slept at all. People don't believe us because we look normal they don't have a clue what we're going through. I pray for a miracle for all of us suffering.
Thank you for sharing your experience with us. It's definitely tough when people don't understand us because what we go through in invisible. Insomnia and restless legs are particularly challenging, as they disrupt much-needed rest. It's important for people to understand that just because a condition isn't visibly apparent doesn't mean it's not real and affecting someone deeply. Wishing you strength and comfort. ♥️
@@tt_looking_glassThe bottoms of my feet tingle. I assumed that was coming from a bad back? Is that a symptom of fibromyalgia? Sometimes the tingling goes up my legs.
@@stacyjessup9577I have the same symptoms and wonder the same thing, is it fibromyalgia causing it or my bad back? Possibly both, however, that symptom only got worse in my 40s, I'm in my sixties now. I've had fibro since childhood, makes me thinks it is the combination of both.
@@shawnacarter946 how is having something worse than fibromyalgia going to be of any use. That's easy as you're aware fibromyalgia is untreatable. Not so the spinal cyst Tarlov cyst disease. Ask a neurologist to find it. You'll be more than halfway there. Easily imminently treatable. Don't be discouraged the nuerolgist hasn't heard of it
@@stacyjessup9577It could be FM, or it could be small fiber neuropathy, which happens in about 30% of people with FM. I have it and I now have constant tingling and buzzing almost over my whole body. It began suddenly with burning pain, after a stomach infection which also caused burning pain. Then it went into feeling like I was stepping on rocks barefoot, even with shoes on. Then my feet would get extremely cold, and now I’m losing feeling and balance, along with many other symptoms. Look it up.
Recently diagnosed, but believe I've had it for some time. THIS was needed today. Called my doctor in TEARS because I've awoken To my hands feeling like the were on fire and completely numb.
I'm so glad that the video resonated with you during this challenging time. Getting diagnosed with fibromyalgia can be both validating and overwhelming, especially when you look back and realize you've been experiencing symptoms for a while. Believe me, I know! The pain and sensations you described, like your hands feeling like they're on fire and numb, are incredibly distressing. Connecting with others who understand what you're going through can provide a sense of comfort and support. Stay strong and continue seeking the right resources to manage your condition. Thank you for sharing your experience, it helps others not feel so alone. ♥️
Google The Fibro Guy and the Curable app, you can recover. I promise.
It could be small fiber neuropathy which goes with FM.
My left hand goes numb if I hold onto this phone too long it's a nuisance I cannot do much physically.
Let's support each other I also have insomnia stayed up for 2 whole days how exhausting that was I also used a heatlamp over my fibromyalgia pain relieves me alot.
Right now I have brain fog in amongst anything else that comes my way.
I feel very humbled/honored that you assigned higher priority to your subscribers with very pertinent/relatable Fibro content before washing your oily hair.😬Seriously, your hair looked very nice (but I wonder if it looks as good in 4K resolution 🤔🤣). Forgive my off humor….The highly depressing nature of Fibro we live with daily compels me to “lighten up” any human interactions or nagging/debilitating physical symptoms as often as I can (unless I feel so bad that I can’t even think clearly). Anyway, this was a very good presentation you made!! All points(struggles) were very relatable! My short hair is easy to maintain, but I have a laundry room sink I can stand next to when I want my hair washed without having to get in the shower …………“Pain” creates so many different feelings in our bodies, it is impossible to describe to someone….something as trivial as gas pain/discomfort takes on a whole new meaning for a Fibro sufferer…🤢
🤣🤣🤣I appreciate your humor. In my opinion that is the only way to survive chronic illness. I needed that laugh today.
Ugh the disability dilemma. You have to document everything else. All depression symptoms, anxiety, arthritis, IBS, breathing problems, sleep issues, everything! Keep on documenting. For me short hair is harder cuz it has to be styled and kept up with no money.
I hear you, and the disability application process can be incredibly challenging. It's often a meticulous and time-consuming endeavor, requiring documentation of all the symptoms. The constant documentation is overwhelming.
On top of that, the financial stress can make things even more challenging. Short hair can be trickier to manage, as it often requires more frequent styling. With long hair, you have the flexibility to braid it or put it in a bun and be done with it.
Once I had bangs and OMgoodness! that was horrrible as I had to deal with it every morning. I also got greasy bery quickly and looked bad if I didn't wash my hair everyday.
Thank you for sharing your experiences, and I hope you find the support and solutions you need to make things a bit easier.
I had a husband who did nothing but criticise and complain about my illness. Sleep too much, don’t sleep enough. Eat too little, eat too much, eat the wrong sort of foods. It never stopped. Getting a divorce was one of the best choices I’ve made. I had a family member say to me ‘ahh a syndrome…, isn’t that what they call an illness they can’t pin down?’ Life’s been really painful emotionally at times.😢
Vicinter, I’m so sorry you had to endure that. Living with a chronic illness is hard enough without the added pain of being criticized and dismissed by those who should support you. Choosing to leave and prioritize your own well-being is such a courageous decision, even though I’m sure it wasn’t easy. You deserve kindness, understanding, and people who truly see what you’re going through.
Sending you so much love and strength as you navigate this emotional journey. You’re stronger than you realize. ❤️
Boy do I understand that! He says he knows….. but he is a major narcissist, which really doesn’t help!
With lupus + CFS, I can relate especially to being unreliable (especially with a job- not being able to work a regular job and losing income because of it) and not being able to get fit due to exercise intolerance. And of course, not being believed - mostly with CFS, less with lupus after my diagnosis - but I felt like I wasn't believed a lot before I got diagnosed. For me, although I've had widespread pain with CFS, my main issue was always fatigue, but also headaches, brain fog, weakness, and crashing after activity. Pain was never a main complaint for me, as you said. But I do believe they are two sides of the same coin (fibro and CFS).
Nicole, I just realized I never answered your comment. I'm so sorry. Thank you for sharing your experience and relating it to the challenges discussed in the video. It's saddening to hear that your experience with lupus and CFS has presented similar struggles in terms of unreliability and the impact on your ability to work a regular job.
It's disheartening when individuals with chronic illnesses like fibromyalgia, CFS, and lupus face disbelief from others, especially before receiving a formal diagnosis. The lack of understanding and validation can add an extra layer of frustration to an already challenging situation.
While some people think that pain is one of the worst symptoms someone can get, fatigue and brain fog can be as debilitating if not worse. Sharing our experiences is essential in breaking down misconceptions and building empathy within the community.
I have 2 friends that are sisters that literally harass me and tell me that no one wants to invite me to do anything anymore bc I always cancel and they can't depend on me ruining their plans. I don't know how I'll feel from minute to minute let alone in advance. I don't have the money to keep up with their dinners out with the girls or anything else. I'm so hypersensitive that I could feel everything truck passing by on a busy road or my neighbor has an automatic ignition and he starts the car in colder weather 15 minutes before he leaves and my who bed vibrates. I can feel motors running through my body. It creeps me out. I can't wait for it to stop when he leaves. Does anyone else experience anything similar if you live near busy roads or people warm up their cars? It amazes me that I am that sensitive. I feel like I always have the heebie jeebies and my nerves. my skin, and muscles are always buzzing with electrical shocks. What kind of crazy autoimmune disease is this? They really need to research this and take us seriously. I cannot find any Drs that specialize in this where I live in New York, on Long Island. Anyone have any suggestions on Drs or kinds of Drs that they have found helpful or say something other than learn to live with it or I can't help you so I don't want to know about it. They've done all they know. 😡🤬😰
@@yacht2sea I would think working on Nervous System Regulation will be helpful for you. Unfortunately western medicine doctors don't help with this, its more of a holistic or alternative medicine doctor that may help you in person with it, but there are tons of youtube videos about how to do it yourself, as well as online courses. It sounds like your nervous system is in hyperoverdrive, you're in survival mode. You need to calm your nervous system and bring it back to "rest and digest" rather than "fight or flight". Thats just my opinion on what it sounds like, if you research what I'm saying you may find it applies to you. Good luck! You can overcome this. I have done it for myself. I would also recommend checking out Raelynn Agle's channel on healing stories of people with nervous system hypersensitivity/ CFS/ fibro. Its all the same root cause, so even if you haven't been diagnosed with CFS specifically, her videos will be very helpful to you still
This video is exactly what i needed to see today, finally received a diagnosis recently and feel like ive been left without anything other then an NHS webpage for support. The unreliable one made me realise this is genuinely one of the biggest struggles ive faced for a lot of time.
Im so happy you found this video helpful. I hope my channel helps you not feel alone and inspire you to have an amazing life in spite of this diagnosis.
I just found out it does get a lot worse. Thirty years plus still have hubby and two kids that are tired of fm and everything else that goes with it. Yesterday was my 69th birthday and I was proud that I was still alive and Ithought doing pretty good. Uh nope my kids have been getting tired of taking care of me as my hubby is otr truck driver and is away a lot. So the day before my birthday I asked the kids to clean bathroom as it is a hated chore and both kids blew up, yelled at me that I never appreciate them, and acted like spoiled teens instead of priveliged 30 plus and yes spoiled adults. I still am in shock with fm kicking into high gear with brain fog, all over deep muscle pain and sharp shooting neck pain due to stress. Hubby arrived in the middle of that and apparently decided ignoring me and my birthday never exsisted so now I am very depressed after crying all nite as I really wanted that day to be special for me as I have always made sure hubby and kids had special ones. Not sure just what to do..... get mad and scream, leave and give myself a special day at spa and nite at bar with hubby, sit everyone down and explain how horrible they have been to me or what??? Any advise?
I'm really sorry to hear about the difficulties you're facing. Living with fibromyalgia is incredibly challenging, especially when it affects our relationships. It's understandable that you feel hurt and disappointed by your family's reaction on your birthday.
In times like these, communication is key. Consider having a calm and honest conversation with your family members. Choose a moment when everyone is relaxed and not in the heat of the moment. Express your feelings and let them know how their actions have impacted you. Sometimes people may not fully understand the extent of your condition and how it affects you, so it's important to provide them with that insight. Open and compassionate communication can help create a better understanding among all of you. Bottling things up only fosters resentment. Remember, you deserve love, appreciation, and support, and it's important to advocate for your own well-being while also fostering understanding within your family. Your children are grown and you have given them all the support and care they needed when younger. It's time they recognize that and show their love and appreciation for you. I am at a stage in my life where my children are basically grown but still live at home. I feel overwhelmed with having to cook every day for them when I don't feel well and it takes so much energy for me. However, they are used to having a home-cooked meal every day. My youngest is 17 and my oldest is 27. At what point I am no longer responsible for cooking for them? This is something I am still navigating. There is no easy answer.
It is natural to desire a special day for yourself, especially on your birthday, but remember that taking care of your well-being should be ongoing. In what ways do you manage stress and prioritize self-care on a regular basis? This could involve exploring relaxation techniques, engaging in activities you enjoy, or seeking support from others who understand what you're going through. I hope this channel gives you a bit of comfort and helps you not feel alone. I wish you all the best in navigating those feelings with your family. ♥️
Are you hypermobile ime from.uk.and we have to find treatment ourselves 27 years CFS pots fybromyalgia fy
@@tt_looking_glassWere you able to teach them to cook? If not, it’s now time too! Too many young people these days feel they deserve everything without having to do anything. My family has never really understood what I’m going through. I’ve been told I’m selfish or lazy, and it couldn’t be as bad as I make it out to be. The truth is, it’s worse! I try not to complain, but many times you end up in bed for the day and you can’t help but tell them why. Anyway, I’d explain the situation and have them take over kitchen duty! It won’t be long and they will be glad they learned when they move out on their own. My kids are grown and out of the house, and I’m on the Carnivore diet, so my husband takes care of himself. He doesn’t eat as well as when I was cooking, but I don’t have the strength to make two meals, so I just take care of myself. He does most of the shopping, (which is really a mess!), but I can’t do it. I used to push through everything and end up feeling terrible, but I got to a point where I basically couldn’t do much of anything. It is what it is!
Has your pain gotten worse over time? Mine has. Of course I have collected other illnesses along the way, too, that add to it. I’ve had FM for about 30 years, too.
Yes I can relate to these struggles. My fibromyalgia has disabled my mobility a lot. I can’t express enough to finding the right team of medical professionals to help aid you in managing your symptoms and establishing a supportive family to be helpful.
Thank you for sharing your experience. When illness affects our mobility it creates immense challenges.
You are so right! Connecting with the right people can make all the difference in coping with the unexpected struggles that come with fibromyalgia.
Lilly Mae, wishing that would happen, but living with fibro 58 years has depleted my bank account. Health care is so expensive in this country and getting good specialists is hard to find.
This is a brilliant video I have had fibromyalgia for 20 years and it’s hard u r so talking the truth u know a lot I just wish I could wake up one morning and feel normal and not in all this pain it’s not good thank u so much Jackie u k 🌈😊
Thank you so much. Yes, it does wear you off. I’ve also had it for a long time and it’s exhausting. I can’t even imagine what it would be like to not have pain. It’s been so long, I can’t remember anymore.
It’s been so long that I don’t know what normal is anymore😔
Thank you for recognizing and saying it out loud! I'm so unreliable and feel so guilty and like a bad friend.
I hear you but it's important to remember that your worth as a friend isn't measured by your ability to always be present or meet every expectation. True friendship understands, adapts, and supports through life's ups and downs. It's okay to not always be able to show up in the way you or others might want. What matters most is the love and intention behind your actions. You're navigating your challenges the best you can, and that doesn't make you a bad friend. It makes you human.
There are so many issues with fibro, it's hard to pick which is the worst! Right now it's the exhaustion, cold sweats, and the pain in my bones. I got a walker, just standing takes energy, So this helps so much! I was embarrassed to try but it's a godsend!
It really sounds like you're going through a tough phase with your fibromyalgia right now. The exhaustion, cold sweats, and deep bone pain you're describing are incredibly challenging symptoms to manage daily. I can imagine it wasn't to get a walker and the mix of emotions and the possible stigma around mobility aids. But it's great to hear how much it's helping you conserve energy and maintain some independence. Mobility aids can be game changers, offering that extra bit of support and safety when you need it most. Many in the fibromyalgia community understand and share their experiences, and finding support among peers can be very validating. Keep reaching out, sharing your journey, and embracing the tools and strategies that help you navigate Fibromyalgia.
A little late to this conversation but this was a great revisit for me of the things I stopped telling people because I was told "its the only thing you talk about" or people belittling your syndrome by saying "I'm tired too; that's just normal".
It's frustrating when others dismiss our experiences with fibromyalgia, mistaking it as something normal like being tired. Many of us with fibromyalgia face similar challenges, this is why it is important to talk about it and raise awareness. Keep sharing your experiences and speaking your truth. We're here to listen and support each other. ❤️
Daniela
@@tt_looking_glass thanks Daniela. ❤️
had a doc tell me 'welcome to the human race, everyones tired'
@@mkf628 Oh yes! I hope you managed to find a health care professional who gets it! 🩷
Yes! I stopped telling people too. I want my extended family to understand why I am so unreliable, but they just think I'm a complainer. Luckily, I've gotten to a point (or an age) where I am less motivated by (anything) people pleasing, but still. I have to admit it feels very unsupportive and alienating (making me not want to be with them anyway). (I'm not a loser, people. I've got a disability!) Just so frustrating.
It took me 3 years to get disability for fibromyalgia here in Australia. This was only after I developed Dystonia as well. Love and appreciate your videos Daniella and your bun looks adorable.
I’m glad you finally got disability even though it took you three years. I’m on disability too but not for Fibromyalgia. I would not have qualified for fibromyalgia but I have many other chronic illnesses and I qualified for those. The problem is my disability is from a private insurance and it will only cover me fire two years. I’m like… this in interesting. Does that mean I’m going to be cured in two years? What am I supposed to do then? I would never qualify for the government disability.
I can't believe your disability is for 3 years because when I filed for mine the Dr had to state that it won't get better and the magic words they had to use was fully treated. I had to coach my Dr to write that phrase! Mine is for life because it's through the government here in Australia and am very grateful because I'm single and was struggling to make it financially on unemployment benefits .
@@wendygraham7787 my disability is not through the government. It was a privately paid insurance through our association. It’s the deal that was negotiated by the association otherwise it would have been so expensive we wouldn’t have been able to pay. I don’t qualify for the government disability because my husband makes decent money. But they don’t take in consideration we have five children still living at home, some still in university and that we help family financially. And my disability is only for 2.5 years. 6 months was considered short term disability. Then you have to reapply for long term disability and that’s for another two year. And then that’s it. You are out.
I’ve got a million things wrong with me and still haven’t managed to be approved no matter how many doctors and specialists have tried for me. Given up now.
@@cathie-aussiegirl6547 I understand wanting to give up. Please don't give up , that is what they want you to do. . I had to lodge an appeal to get mine.
I was a teacher for 20 years. Due to all the symptoms of fibromyalgia, ulcerative colitis and POTS I had to leave. I’m blessed that my husband was supportive about me quitting. He saw how much I was struggling. I understand not being reliable. It’s extremely frustrating! Thanks for sharing! I think your bun is cute! 💗
Thank you. It is so hard to give up a career that you worked so hard to have. There is another TH-camr @healwithlaurennicole who was also a teacher and had to leave because of Lupus. She has a very inspiring channel with a big focus on healing.
@@tt_looking_glass I will check out her channel. Thank you!
I taught kindergarten and 1st grade. I absolutely loved it until I got sick. I know how lucky I am that my husband was supportive and we were able to get by without my salary. It was still hard though. One of the best things we did was downsize to a smaller home that doesn’t require as much energy to maintain. I’m enjoying your channel. Have a great day. Hoping you don’t have too much pain today.
@@debrairvin9776 I hear you. I used to love my job too but had to quit because of my deteriorating health. I totally over did it today and I can already predict a bad day tomorrow but it was totally worth it and I would do it again.
I was just about to comment on this, Debra, because I can 100% relate! I had to leave my teaching career, only 3 years in, because of Lupus. And then I saw Daniela gave me a shoutout, so thanks Daniela! I'm releasing a new video tomorrow about how leaving fulltime work gave me the space I needed to rest, decrease stress and heal myself. I'm so thankful to have had a supportive husband as well. I'd love to connect with you more, Debra! 🙂 I'm so happy for you that you were able to leave and take care of your health, although I understand the emotional pain of feeling like we were forced to leave a career we loved and enjoyed. Its definitely been a tough road emotionally, but my body thanks me for it every day and I am grateful for that!
@@healwithlaurennicole I’m sorry I am just seeing this message now, Lauren. I know Lupus can be so challenging to treat and live with. I will check out your channel now. Thank you! 🌸
I relate to all the symptoms. The constant aching, the brain fog, wanting to get fit and strong but having to start over again and again, being unreliable…I highly suspect I have fibromyalgia, but so far I don’t see the point in getting officially diagnosed because of all the trouble you have to go through and the after all disbelief. What would a diagnose bring me if nobody believes me anyway?
I keep figuring out how to get through the days, as every day brings a new level of pain and fatigue. No, that would be too reliable 😂 some days are actually really good and pain free. I can sometimes jog a 5k, do yoga, go dancing and horseback riding on the same weekend! 🎉
Oh, Mirella, I feel you so much on this. The constant cycle of starting over, dealing with the aches, the brain fog, it’s exhausting. And I completely understand why you’d hesitate to get an official diagnosis. Jumping through hoops only to face disbelief can feel like an uphill battle you’re not sure is worth fighting. It’s frustrating when you know what’s real but still feel like you have to prove it.
But wow, those good days sound incredible! A 5k, yoga, dancing, and horseback riding? That’s such a triumph! It’s amazing how our bodies can surprise us sometimes, even with all the ups and downs. It must feel so freeing on those days, like a little victory that’s worth celebrating. 🎉
Thank you for sharing this. It’s such a great reminder that even in the hard times, there are moments of light. Keep finding those sparks, and know you’re not alone in navigating all this. ❤️
Being ALWAYS tired, in excruciating pain, and unpredictable are a hallmark of fibromyalgia and my biggest struggles. I have all the tools, heating/cold gadgets, and nothing helps. Please keep advocating and raising awareness. Those who comment negatively don't know what it means to talk to someone who shares our pain, understands us, and can connect! Especially since we don't look sick!
You’ve summed it up so perfectly, always tired, constant pain, and the unpredictability that makes planning anything feel impossible.
Thank you for speaking up about how important connection and understanding are, especially when we don’t “look sick.” That invisibility is such a huge part of the struggle, and your words are such a powerful reminder to keep advocating and supporting one another.
You’re amazing for pushing through and sharing this. It means so much, and I’m sending you so much love and understanding. We’ll keep raising awareness together, you’re not alone in this fight. ❤️
You are the first person I’ve ever heard to talk about exercise intolerance. I’ve had that for years and doctors look at me like I’m either lazy or pushing too hard. I resonate with everything you’ve talked about here. You are heard. ❤❤
Exercise intolerance is something that's not talked about enough, and I completely understand how frustrating it is. You're definitely not alone in this. It's really tough when you're doing your best, but it feels like no one gets it. Just know that your efforts and struggles are valid. It's about finding what works for you, at your own pace, without the pressure of fitting into a standard mold.
I'm glad you connected with what I shared. It's so important to have these conversations and support each other. ❤❤
Exercise intolerance was the symptom that really woke me up to something really being wrong. Before that every doctor just kept telling me I am fine.... so for years I just kept telling myself that its all in my head. But the exercise intolerance was SO debilitating! Then my doctor laughed at me and made a joke about it sounding like an excuse to be lazy. Now I have a new doctor. I miss working out...and that rush of endorphins after a good long run.
I'm really sorry to hear about how your exercise intolerance t was initially dismissed by your doctor. It can be incredibly frustrating and disheartening when the symptoms that affect your life so significantly aren't taken seriously. It's a big step that you decided to switch doctors, and I hope your new doctor provides the understanding and support you need.
Stay strong and keep advocating for yourself. You're not alone in this, and I'm glad you reached out to share your story. Here's to a better understanding and management of your symptoms going forward!
I was always very physically active. Would exercise just for fun. Now I find my own stairs hard work.
I hate this part. No-one understands that you just can't excercise. I get told by my doctor that I must go to the gym. I want to burst out laughing. I would love to be fit. I'm not fat but am overweight in my eyes. I want to be stronger in my limbs but I just can't. I even got myself a dog that has to be walked. This forces me to go out twice a day on long walks. If I don´t my dog will have stomache ache and I just cannot have that, because that must be the most terrible feeling for my dog, so I have to go out with him. There is no way I can get out of that. So I have done something to force me to move. I hate this world because nobody understands. I do still work, have reduced my hours and don´t show my depressive state at work. I always laugh and make jokes and act quite normal. When I leave work and get into the car I burst into tears. I sit there and cry for a solid 5 to 10 minutes before I drive home. I hate people, they know I´m not well and that I have chronc pain, but nobody cares. In this day and time nobody has any empathy anymore. I hate people and try to avoid them at all times other than when I´m at work.
Today, I had a sharp jabbing pressure on the arch of my foot. It was like the arch had barbed wire in it. I screamed for about a minute until I could scratch, then, it calmed down. This doesn't happen often, but it has happened to me occasionally since I was a kid.
I hear you. Sometime I have those “out of nowhere” crazy stabs. I’m like “who has a voodoo doll of me? 🤣
That has occurred to me as well! My pup used to look at me strangely when I’d let out a whimper or yowl out suddenly 🤬. Now she’s more used to these random yelps as I hobble around. Voodoo or Karma or wtf ??? I sometimes ponder what I might have done to deserve these moments of agony. It is somehow reassuring to read so many similar stories. Invisible misery doesn’t always love company- but I guess if fellow birds can share tales of these kind of painful feathers… we can at least intermittently flock together in this way, inbetween the flares and restless sleep cycles!🚨🙏🏼❤️🩹⚕️🪬 Thanks D for creating this safe space. It definitely resonates!🇨🇦
You're hair looks really good in this video!❤️
This seems like a really informative video, thanks :)
Thank you. ❤️ I don’t often wear my hair up because it gives me a headache.
I agree you look lovely. Recently diagnosed with Fibromyalgia and Rheumatoid Arthritis myself - still processing and trying to get more information.😊
I posted a comment but don't see so in case it doesn't up I'll just that everything you said resonated with me and is spot on relatable.This is the best vid I've seen on the struggles of living with fibro. And you look beautiful with your hair in a messy bun.Sorry if the other longer comment shows up.
Strange. I don’t see the other comment but you know what? This has happens to be when I have left messages with other creators, so I think there is something up with TH-cam. It’s always good to check.
Thank you so much for the comment, I really appreciate. This video was not even planned it was a last minute ideas I had when in bed and could fall asleep. I just grabbed my phone and wrote some pointers and filmed the next morning. I’m glad people liked it. ❤️
I’ve been dealing with fibromyalgia going on 25 years now. It’s a very long story but to keep it short, after my father died my mother had my hair cut and made me get a perm twice a year. She hated my long straight hair. So, after she died a few years back I let it grow out. (Covid helped with this decision.) My hair grew to 36”. I loved it. It helped me to feel some freedom from my childhood. I felt like it was who I was meant to be. But, keeping it clean and braided just became too hard. Then, last year I learned that I needed brain surgery. So, I made the decision to cut it to shoulder length. I had to simplify my life. I still miss it but I don’t regret it. I’m almost 60 years old and I’m finally learning to love myself and how to really take care of myself. I need it shorter for now, but that doesn’t mean it will be forever.
Hi Sharon,Thank you for sharing such a personal and profound part of your journey. The story of your hair is incredibly moving-it's so much more than just hair; it represents your freedom and reclaiming your identity. I'm sorry to hear about the challenges that led to cutting it, especially the need for brain surgery, but it sounds like you made a wise decision to simplify your care routine to better manage everything.
It's inspiring to hear that you are learning to love yourself and prioritize self-care as you approach this new chapter in your life. It's never too late to embrace who you are and make choices that support your well-being. Whether your hair is long or short, what truly matters is how you feel on the inside, and it sounds like you're growing stronger in that respect every day.
Thank you again for sharing your story with us. You're a testament to the strength and resilience that we all aspire to, and I wish you continued health and happiness on your journey of self-love and care.
My single dad always had my hair cut short
Now I have it long and I love that I can throw it up in a bun when I don’t feel well
Hello 🤗 Thank you so much for sharing this, I needed this today more than ever!
I am a 48 yr old woman that has been going through this for the past 20 yrs and it has taken a hard turn in December. I am currently fighting to see a specialist and its not easy in QC, I am feeling lost and feel like I am not taken seriously.
Thank you for making me feel better and that I'm not loosing my mind!
Take care 🤗
Hi! 🤗 I'm truly touched that my words could provide some comfort to you today. It's clear you've been facing quite a journey with Fibromyalgia, and I know how challenging it is.
I'm sorry to hear about the difficulties you're experiencing in getting the specialist care you need. Sometimes, advocating for your health can be tough, but your persistence will lead you in the right direction.
Stay strong, and don't doubt yourself. You're not losing your mind, and your determination is admirable. If you ever need someone to talk to or have questions, feel free to reach out. Take good care of yourself, and may brighter days be ahead! 🤗💕
@tt_looking_glass thank you for your kind words truly appreciated 🙏 ❤️
I WISH I had someone I could rely on but I’m a single mom so even when I feel like I’m gonna pas out from pain I still have to work 😢😭😫
I'm truly sorry to hear about the challenges you're facing as a single mom living with Fibromyalgia. I cannot even immagine how hard that is.Your strength and resilience are nothing short of incredible. Balancing the responsibilities of work and motherhood while dealing with chronic pain is undoubtedly a heavy burden.
It's unfortunate that you don't have someone you can rely on for support during those difficult moments.
Sending you strength and positive vibes during your journey. 💪❤️😢
Same here. My family thinks I’m lazy and giving excuses.
Jesus is really there if you beg Him for help
I have Fibro & ME & it was so good to hear u talk about how it affects ur life. Its definitely a struggle, as no one can see ur pain, or know the crippling fatigue that prevents u doing the things u love in life.
I hope for everyone with this condition, that a cure will b found soon 🙏
I'm glad to hear that my video resonated with you and that you found it relatable. Living with Fibro and ME is challenging, especially because these conditions often go unnoticed by others due to their invisible nature.
Your hope for a cure is shared by many, and medical research continues to make advancements in understanding and treating these conditions. Let's keep hoping for breakthroughs that will make life easier for everyone dealing with Fibro and ME. 🙏
Thank you for sharing your thoughts and being a part of this community. Your support means a lot!
I've had me before fybromyalgia but fybromyalgia is a symptom of me listed muscle pain so to myself they are same thing and a part if Asperger's add albeit took me 43 get diagnosed
So sad it took so long for your diagnosis. It was 30+ years for my diagnosis. So frustrating & life wasting. Hope a cure is found soon @@Truerealism747
You nailed my top 10! Thank you for your clarity. Unreliable, exercise fatigue and the seemingly limited ability to support myself yet pay $1500 month in out of pocket expenses to manage the illness. Though post covid opportunities are better than ever with remote or hybrid work options. Emotionally heartbreaking loneliness/isolation and challenges in intimate relationships - including not being believed - it's all exhausting.
Marianne, it sounds like you’re carrying quite a heavy load, and I really appreciate you sharing your experiences so openly. Managing illness-related costs while dealing with the physical and emotional aspects of your condition, it’s a lot for anyone to handle.
I’m glad to hear that the post-COVID new landscape of work has provided some good options, at least in terms of logistics. Yet, the emotional side, like loneliness can be just as tough, if not tougher. It’s tough when others might not fully understand or believe what you’re going through. I'm here for you, and so is this community. Whenever you need to express yourself or find a bit of comfort amidst the struggle.
Yes girl, I deal with all that and now I’m having symptoms of Raynaud’s phenomenon. I appreciate ur video so much. It’s nice knowing that I’m not the only one that deals with these symptoms. Thank you and God bless
Thank you so much for letting me know the video is helpful. It helps motivate me to keep making them. Raynaud’s is awful and on top of all that…. Man!!!
Can you have the ymptoms of Raynaus without actually having it?? My fingers throbtrribly but Don have the white fingers.
I relate to everything! It's like you are describing part of my life (I'd probably throw in a couple of more struggles😂).
Oh my gosh, I’m so glad it resonated with you! It’s wild how so many of us go through similar things but also have our own unique set of challenges to add to the mix.
It means so much that you connected with the video, just knowing that someone else gets it can make the weight of it all feel a little lighter. ❤️
@ even though it seems there are so many with fibromyalgia, going through the same problems; yet I never meet anyone around. It's invisible even between us!
I’ve been trying for disability for 3 yrs now for my fibromyalgia + CFS. Plus now with my paraesthesia My life is so unpredictable and I hate having this disease, that I believe that my doctors are so over me talking about. But I’m not complaining I’m communicating but no one listens anymore. This disease has had a tremendous effect on my marriage, mental health and I’m ready to give up 😢
I'm really sorry to hear about your struggles with fibromyalgia, chronic fatigue syndrome and paraesthesia. It's tough when it feels like your doctors don't understand or listen to you. Try seeking support from patient advocacy groups or online communities to connect with others who share similar experiences. Don't give up-reach out to your support network and let them know how you're feeling. You're not alone, and there are people who care and want to help you. Take care of yourself, and stay strong. ♥️💪
I am so sorry to hear your struggle. I am bedridden most of the time, and I know what it feels like to want to give up. Your life and mine still have a purpose, and I believe one day we will help another in the place we were. I pray Jesus will give you comfort, and I hope you are doing better. Sending hugs that don't hurt. :)
@@nancyl.martinez7156well, I sure trust Christ knows where we are, and can use us. As a bed ridden by this and other issues... the Lord has given us time to learn, and brings us the souls we are to share with... He conquers ALL and we serve Him... not this flesh💪💪🤐🙏😇💫
I am 67 and have fibromyalgia and chronic depression, also R/A. Thank you for this video!! Everything you said was on point. 💙
Thank you so much for your kind words. It means a lot to hear that the video resonated with you. 💙 Living with fibromyalgia, chronic depression, and RA is tough, so I’m glad you found the content helpful.
I do not wish this on anyone. I do appreciate the time you and your followers put in to help all navigate this never ending pain.
I completely understand this feeling, and I share your hope for a world without such pain and suffering. Chronic conditions like fibromyalgia are incredibly challenging, and it's heartening to see communities come together to support one another.
I'm truly grateful for your kind words. ❤️
I can sympathize and relate with everything that you mentioned here. I am a man in my late sixties who has struggled with ankylosing spondylitis and fibromyalgia for over thirty years. I know what you mean about people thinking that you are some kind of a hypochondriac, I even fired my first rheumatologist eight years ago because he laughed off my fibromyalgia, saying that everyone with an autoimmune disorder automatically thinks that they have fibromyalgia as well. Doctors are human too, with their own opinions and prejudices. My AS was diagnosed by my eye doctor and my fibromyalgia was detected by my podiatrist who used a tuning fork to measure the sensitivity of my nerves to stimuli. I just happened across your channel and I thank you for sharing your experience with your viewers. I don’t have anything else to add, I think you covered the whole topic very well. You are a great communicator and we need more people like you to advocate for our community. I hope you have a partner who is willing to go “all in “ with you and give you all the support you deserve. I’m blessed that my wife is able to listen and understand my pain and fatigue, and she fully supports me when I’m unreliable and have to delay or cancel activities because of my condition. May God love and bless you richly!
Thank you so much for sharing your experiences and for your kind words. It really means a lot to connect with someone who understands what it’s like to live with ankylosing spondylitis and fibromyalgia. Hearing your story about the challenges with doctors and finding the right diagnosis resonates deeply. It’s tough when the people who are supposed to help us don’t fully understand or acknowledge what we’re going through.
I’m sorry you’ve had to go through dismissive attitudes, but I'm glad you’ve found medical professionals who recognized and validated your symptoms. It makes such a difference when our conditions are taken seriously and treated properly.
I can relate to your experience, especially having the support of a loved one through tough times. My partner has been my rock, standing by me through every diagnosis and every rough day. It’s such a blessing to have someone who understands and supports us unconditionally. It sounds like your wife is an amazing support, and I'm so happy you have each other.
Thank you again for joining our community and for your encouraging message. God bless you and your wife with love, health, and happiness! Let’s keep supporting each other and sharing our stories.
@@tt_looking_glass Thank you so very much for reading and sharing your response to my recent comment. I just watched this video again, trying to focus and learn more the second time around. I live across Lake Ontario in Central New York State, and I hope that the recent fickle weather has not been as hard on you as it’s been on me. Thank you again for your kind and encouraging words. I’m glad to hear that you have strong support from your partner, and I pray that you live and flourish in the love and grace of Almighty God. Thanks again for using a lot (I’m sure) of your precious energy and time to share your story on this fine channel!
It's always a pleasure to read your comments and respond. I'm sorry sometimes it takes me a long time to reply. Comments often get lost in my TH-cam notifications.
I can totally relate to the challenges posed by the unpredictable weather, it does seem to have a mind of its own sometimes! but I'm glad the weather is getting a bit more stable now. Yay!! Finally!
Thank you for your kind words and prayers. Having support from loved ones truly makes a big difference, and I feel blessed. Your encouragement means a lot, and I’m grateful that you appreciate the effort put into sharing these videos. Thanks again for being a part of our community!
It feels like you're describing MY life. I still can't even get diagnosed. I'm a disabled Veteran and my doctors spend more time gaslighting me than helping me. I'm in tears watching your video. Everything you said rings so accurate & true that it's eerie. Thank you for sharing your story, you're inspiring. Be well. ❤
I’m so sorry to hear that you’re going through this, especially without a proper diagnosis. It’s incredibly frustrating and disheartening when doctors don’t take you seriously . Being a disabled veteran on top of that. Thank you for your service, and you deserve so much better care and respect.
It’s heart-wrenching to hear that my story resonates so closely with you, but I hope it helps to know you’re not alone in this. We’re all in this together, and sharing our experiences can bring a bit of comfort and solidarity.
Thank you for your kind words. Your strength and courage are inspiring, too. Sending you a big virtual hug and all the positive vibes I can muster. Be well and take care of yourself. ❤️
fibromyalgia, is like having the flu everyday of your life without the fever, and constant nerve spasms that goes through your body. FYI as you get older it gets worse and bundles up with all the rest of old age problems. what i find helpful is eating real food , green juices, red light therapy, sauna, and gentle stretching, and prayer. medication did not do anything for me, if anything it made me dizzy and you are dizzy to begin with. it's a hard life but you have to push ahead because you are alive.
You've really been through it with fibromyalgia, it's great you've found your own way to deal with it, especially since meds weren't your friend.
Turning to real food, gentle stretching, and prayer instead of just relying on medications is very inspiring. It's like you're saying, "Yeah, this is tough, but I'm tougher." And even though fibromyalgia throws a lot at you, you're finding your own path to feel better and keep moving forward. It’s a powerful reminder for everyone dealing with their battles that finding what personally helps you is key.
@@tt_looking_glassYes Indeed, also look around with kids, and all people out there with cancer, in wheel chairs, when you see this you can say hey I will be kind to myself and take it a day at a time and just keep going.. Feel good and push forward God Bless.
Well presented. I am so glad that you touched on the fact that one doesn’t look sick, and as a result, one’s challenges are not taken seriously. I don’t discuss my conditions with people I don’t know well, but a number of times have been in situations where the conversation turns to “welfare” or people with “supposed” disabilities like fibromyalgia. The idea that because one does not look sick, one can’t be sick and is therefore “milking the system”, is all around us. I still struggle with feeling guilty and wondering if I’m fooling myself, and am taking advantage because I do miss some events that I don’t want to go to. I’m always questioning my “actual” motivations. I disliked my job so much, and had been granted FMLA (unpaid of course!), but never used it, because I knew I would be judged by my co-workers due to there already being another co-worker who was talked about behind her back, whenever she took a day off with FMLA.
Thank you for sharing your thoughts and experiences. It's tough when people assume that because you don't look sick, your challenges aren't real. This misconception is very hurtful.
Taking time off when needed is a legitimate way to manage your health, and you shouldn't feel guilty about it.
I'm sorry to hear about the challenging work environment. Your experiences highlight the need for greater understanding and empathy regarding invisible illnesses. My work environment wasn't very understanding either and as a result, I ended up having to leave.
@@tt_looking_glass I got lucky. The last two years making me eligible to retire, I had a very understanding boss. We worked 7 by 24. He would allow me to take breaks and go rest in the lounge if I needed. I also was working with a crew of understanding people the last year. The one guy who was ultra conservative and of “welfare queen” mentality, who I expected an issue with, had a sister-in-law who was mostly bedridden with fibromyalgia. He said how much he knew it took to come in everyday, and appreciated how hard I worked . He became the first one to help me out when there were physical demands with the job. I came to appreciate him overtime; not his views, mind. But his empathy
Yes, no one seems to understand that only 3% of welfare recipients cheat the system, while 50% of us cheat on our taxes.
Nice reminder. 👏
I hate this condition so badly! Living with this for the last 15 years, i have depression because there's a ton of stuff i would love to do and no longer can. The slightest touch, or even thoughts of it hurts extremely badly.
I would love to go to an event or hangout with friends and then suddenly i can't because i hurt so badly. The forgetfulness, the fatigue, anxiety for fear of doing something that may cause intense pains if i do them, to not getting enough rest or cant sleep at all, then breaking down crying because the pain is bad that the only thing i can do is sit in a hottub for an extremely long time in hopes to calm the episode down, sometimes it helps, other times it doesnt . Sometimes the pain hurts worse in one area of the body and the other areas not so bad. Hate, hate when the weather changes ever so slightly because then it throws me into a Fibromyalgia crisis for the first few days. Especially when the weather gets colder or it rains.
Fibromyalgia is diagnosed with trigger points, CFS doesn't have trigger points.
I completely empathize with you. Fibromyalgia is a relentless condition that affects not only the body but also the mind. The limitations it imposes can be incredibly disheartening, leading to depression and anxiety. I've been there too.
A subscriber pointed out to me in a comment that trigger points are no longer needed for diagnosis. This change recognizes the complex nature of the condition, which involves widespread pain and other symptoms. I hope this broader understanding leads to improved support and treatments for individuals like us.
Wishing you strength and resilience as you continue to navigate this journey. 🌼💪
@@tt_looking_glass thank you!! We all need this in our Fibromyalgia journey
What’s frustrating is that I have PTSD in part due to treatment from employers that I have been working through. Due to decades of living in survival mode, but body is rebelling. I’ve done the work to get rid of some of the emotional pain, but it’s hard to forget this and hard to have a job and quality of life due to the physical pain and fatigue
Hey there! Thanks for sharing your story. I'm really sorry to hear about the challenges you've faced with employers and the impact it has had on your well-being. Dealing with PTSD is not easy, and it''s understandable that the physical pain and fatigue makes it difficult to hold a job and maintain a good quality of life. You are not alone in this journey, I have had my share of trauma with employers. If you ever need someone to talk to or have any questions, feel free to reach out. Take care!
I have had a great deal of difficulty with working die to brain fog. I was an RN for 20 years. Now I don’t even know what I could do to support myself. Fortunately for now my husband is employed, but you never know when you will have to support yourself…🤷🏻♀️
I had beautiful long curly hair that I loved, it gave me confidence and I just felt so good about myself.
Then, I got my first lupus flare. My hair started to fall out, its condition changed, and it looked dull. Also I started to sweat in ridiculous amounts and my hair would make it worse with overheating.
I had to take a pair of scissors to my once beautiful long hair and cut it to the jawline.
Of all the things that I've had to give up due to SLE, fibro, CFS the loss of my hair was a pivotal moment in my journey and I had to accept my old life was over.
13yrs later I try so hard to be productive but it's a daily battle with a very cruel illness.
My only relief is in sleep, but I wish it wasn't so.
Now being awake during the day is incredibly depressing because of the wasted time that I can't take advantage of.
I'm typing this at 12.40am I'm fairly alert but feel so weak yet better than I would at 12.40pm.
These illnesses are the antithesis of a normal life.
Reading your story truly resonated with me. It's incredibly hard when something so integral to your identity, like your beautiful curly hair, is taken away because of an illness. These conditions can indeed be relentless and change our lives in ways we could have never anticipated.
The fact that you find some relief in sleep, yet struggle with the reversed day-night cycle, is challenging. Thank you for sharing your story, your experiences can provide understanding and comfort for others facing similar battles. Stay strong and keep pushing forward. Every day is a new chance, whether it's at 12:40am or 12:40pm.
Hi, I too have Fibromyalgia & thank you for your time talking
about the struggles of
living with it. My fibro started over 30 yrs ago.
It took over five yrs &
six doctors to get an
official diagnosis. I wanted information
on how to treat it so I called the CDC, they
didn't know much about
it at that time but I started
researching it. I was working then but about
Eight years later my doctor said I had to
go to half days which
I did but not long after
I had to quit working
altogether. I wanted
to let you know that I
did file for disability &
was approved after
over two years of being
denied & mountains of
paperwork. I was so blessed. It took a lot
of time & patience but
don't give up. I am now
73 yrs young & have two great doctors treating
me. I have improved &
never stop learning
more & more. Ok you take care & never stop eating
a healthy diet, rest well exercise, take vitamins
& stay away from stress as much as possible.
to quit my job
Hi there! It sounds like you've been on quite a journey with your diagnosis and finding the right treatment. Kudos to your perseverance and determination in researching and seeking information. It's unfortunate that you had to eventually quit working due to the condition, but it's great to hear that you were able to file for disability and eventually got approved after a long and arduous process. Your experience and advice are truly valuable, and it's inspiring to know that you have supportive doctors and that you've seen improvements over time. Thank you for sharing your story, and I wish you all the best on your continued journey towards well-being. Take care! ♥️
WoW, you hit the nail on the head! It certainly is a disease of Mental, Physical and the Emotional. Those 3 go together regardless of anything!
You’re absolutely right, fibro really is a disease that affects the mental, physical, and emotional all at once. It’s like this tangled web where all three are constantly interacting, and it’s impossible to separate them.
I’m so glad this resonated with you, it’s such a complex condition, and acknowledging all the layers can be really validating.
Finally someone who can put words to my life. Thank you for being a voice to this very loud invisible illness.
Thank you so much for your kind words. It means a lot to hear that my content resonates with you. This invisible illness can feel so isolating, but knowing we're not alone and that we can support each other makes a big difference.
I'm glad we can share this journey together. Take care and stay strong! ❤️💪
THANK YOU for mentioning hair and showering! I have curly hair that took decades to grow about tailbone-length (I'm 6'1" so that's a longer distance from my scalp than for many), and I love it long... but the last few years especially I've had SO much fatigue that I frequently look so greasy, and I hate it.
PLUS I'd also love to exercise or take self-defense, but that requires more physical discipline than fibro will allow for.
You're very welcome! It's essential to address all aspects of living with fibromyalgia, including the challenges that might not be as commonly discussed. Your hair must be absolutely gorgeous, it's completely understandable that you'd want to keep it that way.
@FullMoonHowl and @tt_looking_glass -- I felt same about my hair for years. However, earlier this year I got it cut short of necessity (no energy to spare). I am delighted. It is such a relief. Washing is so much easier I do not dread it. Air drying happens much quicker. (It would be fast with blow dryer but I don't use one.) A good hairstylist makes a great difference. She is so gifted she seems to "get" my hair waves, curls, twists and "cow licks". Now I've had my third cut she just seems to get it better and better. What a relief!! Please consider to not rule it out adamantly. Saving strength is, for me, a good tradeoff. Plus people said it took years off my apparent age.
Wow! You said it so perfectly. I cried because you really spoke to me about how fibromyalgia has affected me. You make so much sense. I have both Fibromyalgia and ME/CFS. Thank you for being so open. Xxxx
I'm deeply moved by your comment, and I'm glad to hear that my words resonated with you. Living with Fibromyalgia and ME/CFS is incredibly challenging and support is Indispensable.
Remember, you're not alone in this journey, and sharing our experiences and emotions can be a powerful way to connect with others who understand. Feel free to reach out anytime. You're strong and courageous, and I appreciate your kind words. Sending you lots of support and warm wishes! 🌟💕
Also I have spent most of my savings trying to find the right specialists privately. And I am now back at square one. What a waste of time and money. It’s like, no matter what you do, you’re in a dead end. Also, it’s hard because you worry your children won’t understand your illness and worry they think you are lazy and absent.
That is incredibly frustrating and disheartening, having to use up most of your savings searching for the right specialist, only to feel like you're back at square one. It really does feel like hitting a dead end, no matter how hard you try. And I totally get the worry about how your kids see you-it's tough when you think they might not understand your illness and might see you as lazy or not there for them. Keep the conversation open as they grow and I can assure you they will become very empathetic human beings. Hang in there. ♥️
I am turning 42 at the end of this year, married, five teenagers, and a career I adore. I too never exercised because of intense pain, fatigue, and flare up in Fibromyalgia, chronic fatigue, and other chronic illnesses I’ve been dealing with for more than 20 years. I purchased a MaxiClimber for $200 in a bid to become stronger and to build my stamina. Against all odds, I’ve stuck with it for nearly 8 months now. I have worked up to 400 reps every other day. I started with 25 reps. I minimize flare ups by skipping a day in between. Physically, I feel the same amount of pain and fatigue I would feel otherwise, no better, no worse, but I look great, and that makes me at least feel better in that aspect ❤ I HATE working out, btw!
Also, my husband and I practice intermittent fasting, which for us means we space out our meals. We eat whatever, just actual portion sizes 😂 I’ve lost 50 pounds in the past year and a half in another bid to lessen my pain and fatigue. It didn’t, unfortunately. My husband went from having diabetes to not having diabetes by fasting in this way.
Happy early 42nd birthday! It's amazing that you're balancing a career and five teenagers, all while dealing with chronic illnesses. Great job on sticking with the MaxiClimber and working up from 25 to 400 reps! It's good to hear that, even though the pain and fatigue are the same, you feel better about how you look.
Losing 50 pounds and managing your health with intermittent fasting is impressive, too. Sorry to hear it didn't lessen your pain, but it's great that it helped your husband with his diabetes. You're really doing an incredible job looking after your health. ♥️
Sorry for my English,I'll try without spelling problem,
Please explain about the eating you mentioned,the fast
And about the exercise,I'm dealing with fibromyalgia for over 15 years,I'm trying my best as well as at the emotional aspect ( sorry English is not not my language) I spent so much money but I feel like nothing happened
YES
I feel in a constant state of grief due to the loss of reliability......I have placed high value on reliability throughout my life so this is hard to accept!
Yes your hair is in style and you look very beautiful in this video.
I completely understand what you mean about that constant state of grief. Losing the ability to rely on yourself the way you once did is such a hard thing to come to terms with, especially when reliability has been a core value in your life. It’s like mourning a part of who we were, and it’s something I struggle with too. Thank you for your kind words about my hair and the video, it really brightened my day. We’re navigating this together, one step at a time. 💜
You are a beautiful young woman. I have great compassion for you and understanding. I am 79 and was diagnosed in 1993. It has gradually worsened year after year. When I was diagnosed people/doctors were reluctant to believe it was a real medical condition. Since that time the list of symptoms has grown longer and longer but the treatment has not been found. I hope they find help for all sufferers of this horrid baffling debilitating disease . Will be thinking good thoughts for you. PS…I think stress was the main reason ..cause of my developing this syndrome.
Thanks so much for your kind words and compassion. It's really touching to hear from someone who's been living with this for so long. I can't imagine how tough it must have been back in 1993, especially when there was so much skepticism about it. It's frustrating to hear that even though we know more about the symptoms now, there's still no solid treatment. I totally agree with you, hoping they find some real help for everyone dealing with this awful disease. And yeah, stress seems to be a big trigger for a lot of people. I'll definitely keep your advice and experience in mind. Thanks for thinking of me, and sending good thoughts right back at you!
OMG the hair is spot on, I had very long hair (and depression) so I cut it all off myself. The water of a shower feels like a thousand needles hitting my skin. Now I'm more depressed because I cut my hair and I still can't wash it. You're spot on.
I totally get it! Hair and showering can be real challenges when dealing with chronic illness and depression. Don't be too hard on yourself about cutting your hair; it'll grow back. The important thing is taking care of yourself. You're not alone, and there are ways to make things more comfortable. Take care! 💙
I can relate to everything you just said I’ve been suffering for years and finally just got a diagnosis last week. I knew someone was wrong but these doctors make you feel like it’s all in your head which makes you get isolated and trigger anxiety and depression. It’s rough living with this and it take a lot of will power to keep on pushing through on a daily and try to stay true to your self and accomplish life goals but let’s be creative in creating a life that can support our condition and push through this ladies. I wish all of you all the best and my prayers are with you all! 😩❤️🙏🏾🙏🏾🙏🏾
I completely understand what you're going through, and I'm so sorry to hear about the struggles you've faced. Getting a diagnosis can be a relief in some ways, but it's also disheartening when you've been made to feel like it's all in your head.
Your determination and willpower are truly admirable. Living with a chronic condition like this is incredibly tough, and you're absolutely right that it's important to be creative in creating a life that supports your well-being. Surrounding yourself with understanding and supportive people can make a world of difference.
Thank you for your kind wishes and prayers for everyone going through similar challenges. We're all in this together, and your positivity and support mean a lot. Sending you strength and well wishes on your journey! 💪❤️🙏
I am reading these comments and as someone who is just now making the connections in my own health issues. I feel so much less alone after reading the struggles people are sharing that i can relate to.
Also, this is the first time coming across your channel. And i just wanted to say i was thinking about how pretty your hairstyle looks and i couldn't even tell it was the "dirty hairstyle" 😂😂
Thank you for sharing your story, i have subscribed 😊
I'm really glad to hear that reading these comments has made you feel less alone in your own journey. It is so comforting to know that others have faced similar struggles and challenges.
Thank you so much for your kind words about my hairstyle, and I'm glad you found my channel! 😄 I appreciate you subscribing and hope that you find the content helpful and supportive as you navigate your own health issues.
Remember, you're not alone in this, and there's a community here to support you. Thank you for being a part of it! 🌟😊
Excellent video. The pain morphing into one, you’ll find me sitting in the doctor’s office with my eyes closed trying to concentrate on my right elbow (or whatever). I was diagnosed with fibromyalgia first then cfs, I did get Ross river virus in the middle of both so that was an added bonus.
Oh those damn viruses. I really believe my fibromyalgia was caused by EBV and my POTS and MCAS by Covid.
@@tt_looking_glassseams though time gives is them.all just added stresses as time goes on
I identify and live daily with everything you said. Thank you for bringing awareness. I've been suffering for 15+ years. Cannot work anymore bc I'm afraid I'd get fired for not accomplishing enough. Most people don't understand any of it. People tell me to get up and move more, exercise, like it's just a little arthritis. If I could, believe me I would. I treasure the days that I can do more but I always end up pushing myself over my limits and then I pay for it in spades for days or weeks and can't get out of bed. I can't find a Dr to take me seriously or not offer me the same things over and over that have side effects worse than the symptoms let alone the withdrawals of going off them. I am alone with no family. I have a 94 yr old mom who tells me constantly how unreliable I am, even though I came to help her for a couple of weeks as I do every few months and saw her struggles and I decided to stay to help her and have not gone home in 7 months. I feel like I have no quality of life and I am only 66. It's very upsetting to cope with this, especially with no real support system. So thx again for making me feel less crazy. ❤❤❤
Oh my heart goes out to you. 💔 I can feel the weight of what you're carrying, and it sounds like you've been through so much, especially with feeling misunderstood and not having the right support. It’s incredibly tough when even doctors don’t get it, and pushing through, only to be set back, is something I know all too well. Like you, I’ve learned the hard way that people often don’t see the whole picture, or they simplify it with "just exercise" or "it's not that bad," when in reality, it’s so much more.
I can't imagine the strength it takes to care for your mom while dealing with your own daily pain and the emotional toll of feeling unreliable. That’s a lot to handle, especially when you’re doing it without a solid support system. Please know that I see your strength in staying, in helping, in just getting through the days even when you’re hurting so much.
You’re not alone in this, even though it can feel that way. I hope you can find little pockets of rest or self-care, and I’m so glad this video gave you a bit of comfort. It’s a reminder that you're not "crazy" at all, your pain is real, and you’re doing the absolute best you can. Sending you so much love and strength. ❤️❤️
Great video! Thank you! I’m about 20 years with fibromyalgia, Hashimoto’s and now inflammatory arthritis. Like you, my biggest struggle is being unreliable to myself and others. The other stuff I find ways to manage, but not being able to be there for myself or others is tough on the emotions, which can make things worse or cause an extended flare.
It’s an endless cycle. Some days I can deal with it, sometimes not. I’m learning to be ok with this. It is what it is mentality. That does seem to help not to beat myself up over what I can’t control. I’ve also been to specialists and naturopaths and found some relief here and there, but flares return at some point with no rhyme or reason to why the flare began or what’s making it worse.
It helps so much to know those of us with this are not alone. Being able to hear your thoughts and read other’s comments is so helpful in this journey.
💗💗💗
Thank you for sharing your experiences and insights. It's clear that you've been on quite a journey, managing your a hand full of health conditions. The struggle with unreliability, both to oneself and to others, can indeed be emotionally taxing and contribute to the cycle of flares.
Acceptance and self-compassion can play a crucial role in managing these conditions.
You're absolutely right that you're not alone in this journey. Finding support and a sense of community among others who understand these challenges can be a source of comfort and strength. Remember that your journey is unique, and it's impressive how you've adapted and learned to navigate through the ups and downs. Keep leaning on the support network you've found, and continue to explore ways to manage and improve your quality of life. Thank you for sharing your thoughts and experiences with us. ♥️
@@tt_looking_glass thank you ☺️
Girl!!! I am watching this in tears. It’s like you are recounting my own story and fears and struggles!!!! I hate that you have to go through that but it’s nice to know I’m not alone
Hey Michelle, I’m really touched that my video resonated so deeply with you, but I'm also sorry to hear that you’re going through such similar struggles and fears. It’s tough, isn’t it? Knowing that someone else understands exactly what it feels like does bring a bit of comfort, though. You’re absolutely not alone in this.
Sharing our stories and hearing others say “me too” can be incredibly powerful and healing. It helps us feel connected and supported, even on the hardest days. Please know I’m here with you, and this community is here for you, every step of the way. Let’s keep sharing, supporting each other, and finding strength in our shared experiences. You've got a friend in me, Michelle. Hang in there, and let's face these challenges together. 💖
Wow! Thank you! That means so much to me. And your timing is perfect as I sit and contemplate how in the world I’m going to get from one side of today to the other. I know I will. However, it sucks that I have to plan how to walk to the other side of the room. That I can’t hold my four legged child on my lap because his little paws feel like knives. Knowing I will have to play “how many people can I disappoint today”. I don’t like that game. But knowing there are people out there who can come into my life, into my house, into my mind allows me to come at this day differently. It helps me be thankful that I have a beautiful and safe space to walk around in. It gives me the space to think of other ways to be with my fur baby that will be better for the both of us in the long run. Being thankful to have people in my physical circle that are close enough to me to worry that I have disappointed them. Does any of that even make sense? Your replay and encouragement means a lot. Thank you!!
Michelle, your words absolutely make sense, and you articulate the daily challenges so well. It's a feeling many can relate to when dealing with chronic conditions that limit daily activities. The fear of letting others down is overwhelming. It’s so tough to navigate the physical limitations and the emotional toll they take, not just on you but on your interactions with family and even pets.
I’m truly moved by your ability to find gratitude amidst these tough moments.
Thank you for sharing so openly. It helps all of us feel less alone. You’ve got a whole community here that understands and supports you. 😍
I needed this video. I can identify with everything you said. I'm going to share this with my friends to help create awareness. I try to articulate these symptoms, but I get overwhelmed with the amount of symptoms and the pain never, ever stops. Thank you. It is great to hear someone say what needs to be said.
I'm really glad to hear that the video resonated with you and provided some comfort. Sharing our experiences and spreading awareness about fibromyalgia is crucial, as it helps others understand the challenges we face. It's indeed overwhelming, and finding the right words can be difficult.
Remember, you're not alone in this journey. Many people, just like you and me, are navigating the complexities of these conditions. Thanks for watching. Take care! 😊
Thank you so much for your support. ♥️
Thanks for sharing your video. The exercise intolerance is a real issue for me. Age does seem to matter for me, too. I’m over 50.
I have suffered undiagnosed for decades. Most days I feel nearly disabled from it but I’m finding my hope and help in Jesus. I may not be able to cry out to everyone around me but I can always cry out to the Lord since he’s always there.
Thanks for watching and for sharing your experience. Exercise intolerance is such a tough issue, and it definitely gets harder as we get older. I’m sorry to hear that you’ve suffered undiagnosed for so long, it’s heartbreaking when you feel nearly disabled from it all.
Finding hope and help in Jesus is a beautiful thing. It’s comforting to have that unwavering support and someone you can always turn to. Sometimes, faith and spirituality can provide strength when everything else feels overwhelming.
Keep holding onto that hope, and take things one day at a time. We’re all in this together, and your faith and resilience are truly inspiring. Sending you lots of love and prayers.
It's refreshing in a way knowing I'm not alone and how you feel...
is validation for my fibromyalgia.
Also I completely identify with all those struggles!
I get what you mean, it really is validating to hear that we’re not alone in these struggles. Fibromyalgia can make us feel so isolated, but knowing there are others who truly understand the ups and downs makes a huge difference. I’m so glad the video resonated with you! We’re all navigating this together, and sharing these experiences is such a powerful way to lift each other up. Sending you so much strength! 💜
I'm crying here. I have never heard anyone so thoroughly touch on the hardest things about having this illness. I feel so seen. All of these things are so, so true. Every single one is something I deal with. One big issues I have found with having Fibro is knowing when something IS, in fact, Fibro, or a symptom of something else. Should I be concerned about this pain? Is it new, or is it just another flare? I never know when something is a normal flare, or something I should be looking into. When do you go to the doctors, or the hospital? A few months ago, I ended up in the ER because I had severe shoulder pain, and I couldn't breathe without severe pain in my upper right quadrant/stomach area. I couldn't walk more than a few steps without my breathing being so laborous that I couldn't catch my breath. After an EKG, blood, and some Morphine (which didn't really take away the pain), they couldn't find anything wrong with me. They sent me home with some anti-spasmatic medicine. It took another almost week for it to go away, and I have no idea if the medicine they gave me helped, or the flare went away on it's own. It's so, so hard.
I can feel every word of what you’re saying. You are so not alone in this, even though it can feel like it sometimes. That constant doubt, wondering if it’s “just” Fibro or if something else is going on, can be so overwhelming. I totally get that anxiety about when to go to the doctor or the ER. It’s such a fine line, and it’s terrifying to be in that space where you’re in so much pain, but nothing seems to show up on tests.
I’ve had those moments too, where I’m left questioning myself: "Is this something serious or just another miserable flare?" And the worst part is that uncertainty can leave you feeling so helpless, like you’re just waiting for the pain to pass and hoping you’re making the right call.
You’re doing your best in an impossible situation, and that’s worth recognizing. It takes so much strength just to keep pushing through, especially when it feels like the world doesn’t understand what you’re dealing with. Thank you for sharing this, you’ve put into words something so many of us feel but don’t always know how to express. I’m so glad this resonated with you, and remember, you’ve got a whole community here that gets it. We're in this together. 💜
That list is spot on! It's so weird to hear someone know my exact thoughts . I know that list so well. Thanks for confirming that. Crazy me often think it's just my head creating these things. I feel like I can't trust what I think sometimes. It's so confusing. I'm beginning to understan it all more though. The doctors kept dismissing what I would try telling them for years. It finally got bad enough I knew it had to be fibro. A neurologist finally listened just yesterday and confirmed what I knew all along. So much time has passed with me trying for SSDI that I am no longer eligible. At most I can get just SSI which is an insult to try to live on. I would say the loneliness of it all is number 1 the worst.
I'm so glad to hear that the video resonated with you. It’s really validating to know it's not "just in your head," especially after such a long struggle for a correct diagnosis. I’m sorry to hear about the challenges you’ve faced with doctors and the frustrating situation with SSDI. The loneliness and isolation that often accompany chronic illness is incredibly tough. Please know you’re not alone in feeling this way. This community is here for you, to share in your struggles and support each other. Keep advocating for yourself and reaching out. You deserve to be heard and supported.
Thank you for the video and to all who are sharing their experiences. I’m 61 and have had fibromyalgia since my 30’s. It still amazes me all different symptoms and I question myself. So reading these comments helps me realize I’m not losing my mind. It’s very scary at times. Right now it’s the fibro fog. I’m convinced I’m going to get dementia early. The other thing is I attribute everything new symptom to fibro. Yes this disease comes with many symptoms, please don’t ignore a symptom if it gets worse. Better to have it checked and come back negative than to ignore something more serious. I’m still working and push myself to exercise at least 4 days a week. For me , if I sit too long, lay down too long or move too much I’m in pain. So I minus well exercise and get some benefits from it. Hang there and God bless you all.
Dorothy, I’m so glad the video and comments are helping you feel a little less alone, it’s such a relief to know we’re not losing our minds when all these random symptoms keep showing up! Fibro fog is so scary sometimes, and it’s easy to worry that it’s something worse, like dementia, especially with how unpredictable this condition can be. You're absolutely right about getting things checked out, though. It’s always better to know for sure than to ignore it. I admire your determination to keep exercising despite the pain, it’s a delicate balance, but you’re doing an amazing job listening to your body. Keep pushing forward, and don’t forget to give yourself grace. Sending you lots of love and strength! 💜
Your hair looks fabulous! My biggest struggle is getting fit, as I pay dearly afterwards! Thank you for your wonderful videos ❤
Thank you so much for the compliment on my hair! 😊 I appreciate your kind words about my videos.
I understand how challenging it is to stay fit when living with fibromyalgia. It also gets harder as you get older. But remember small steps and consistency can make a big difference.
Wishing you all the best on your journey to balance and wellness! ❤️
I have fibromyalgia and inappropriate sinus tachycardia (IST), which is POTS's cousin syndrome. I haven't heard the entire video yet, but so far i most certainly relate. I was only diagnosed a year and a half ago, but I''ve had fibro for at least 16 years and it's getting worse. You will get a new subscriber!
Thank you so much for sharing your story, and welcome to the community! ❤️ Fibromyalgia and IST together? That’s a lot to deal with. Having dealt with fibro myself, as well as SVT, I know how much it can mess with every part of your life.
It’s amazing that you’ve finally gotten a diagnosis for at least part of your journey, even if it’s come after so many years of struggling. Having those answers doesn’t make everything magically better, but it’s such an important step in understanding what you’re dealing with and how to manage it.
I’m so glad the video resonated with you, and I can’t wait to have you as part of this little corner of the internet. You’re not alone in this, and we’re all here to support each other. Sending you so much strength and love. ❤️
I needed to hear this so much today. I feel seen and you were able to put things into words that I have been struggling to explain to my spouse and family. Thank you for this!❤
I'm genuinely touched to know that my words resonated with you and brought you some comfort. It's not always easy to articulate our innermost feelings and thoughts, especially when we're grappling with complex emotions or situations.
Remember, it's okay to have moments where we can't find the right words or feel overwhelmed by what we're going through. Sometimes, sharing a video can bridge that gap and help our loved ones understand our perspective better.
Thank you for your heartfelt comment. ❤️
Brilliant video 👍
Thank you so much. I’m glad you enjoyed it.
You just described my struggles to a T! I couldn’t believe how much I could relate to everything you spoke about, even the messy bun, which by the way, is the way I wear my hair all the time. I don’t think people realize just how challenging it is for us to do things as simple as, like taking a shower and doing our hair. It can be so painful and completely exhausting. Aside from the pain and constant exhaustion, the worst part for me, is having people judge me and not being able to fully understand what I go through on a daily basis. It has such a horrible effect on your mental wellbeing. 😔
Tina, I get it. I really, truly do. ❤️ It’s those “little things,” like taking a shower or doing your hair, that people don’t realize can feel like climbing a mountain when you’re living with chronic pain and exhaustion.
The judgment from others, though, that’s the part that stings the most. It’s so hard when people can’t see or understand what’s happening behind the scenes. It really does mess with your mental health.
I’m so glad my words resonated with you and helped you feel seen. You deserve kindness, patience, and compassion, especially from yourself. Sending you so much love and strength to keep going, messy bun and all.
You're right, it is definitely a full time job trying to look after your health. I think it's a good idea to write everything down like who you are speaking with and what they say.
Taking care of our health really does feel like a full-time job sometimes. Keeping track of everything can get overwhelming. Writing everything down helps keep things organized and ensures you don't forget any important details.
Take care and keep pushing forward! 😊💪
@@tt_looking_glass Thank you, you too.
Excellent video. I feel people just think I'm being lazy. Others thick I'm incapable of doing anything when I can do some things during better times.
Thanks so much for your kind words about the video! I totally get what you're saying - it's really tough when people misunderstand and think you're just being lazy. Fibro can be so unpredictable, with good days and bad days, and it's frustrating when others don't see that you're actually doing your best. It's important to remember that your worth isn't defined by how much you can do. You know your body and its limits better than anyone. Keep celebrating those better times when you can do things, and don't be too hard on yourself during the tougher moments. Hang in there!
I’m 22 and only just got diagnosed. My doctor told me that it’s not likely to get better going forward, and it’s so hard to come to terms with. I’m in pain, I’m exhausted, I can’t even go to the grocery store for fifteen minutes without needing to lay down and recover. So few people my age understand when I tell them I’m simply hurting. I’ve cancelled dozens of classes or adventures, slowed down friends, changed plans just because it’s so taxing. And she’s telling me that it’s more likely to get worse than better?
I’m trying a medication that’s supposed to help, but the side effects are so rough on me. I’ve had cold-like symptoms every other week and I’m being told to just wait it out. This has been hard for me to come to terms with.
I'm really sorry to hear you're going through this. Getting diagnosed at 22 is tough, to say the least. It is very frustrating and exhausting to not even be able to do simple tasks. It's very isolating when people around you just can't grasp what you're experiencing.
Hearing from your doctor that things might get worse rather than better is a lot to process, and it's totally understandable if you're finding it hard to come to terms with. It's okay to feel upset or angry about it. It's a big deal, and you're allowed to have all the feelings you're having.
On top of that you are dealing with side effects. It's one thing to try and manage the condition itself, but when the treatment makes you feel unwell in other ways, that's another layer of difficulty. It's important to give yourself credit for the strength it takes to keep searching for something that helps,.
Even though it's hard, you're doing everything you can right now. It's okay to take things one step at a time and to give yourself permission to rest when you need to.
I know the future is uncertain but you are not alone. There are communities and support groups out there full of people who get what you're going through. Sometimes, sharing your story and hearing others can make a big difference in feeling understood and finding new ways to cope.
Keep hanging in there, and take things day by day. ♥️
Everything is a struggle ..even getting diagnosed..told for years the symptoms where all in my head. The pain is horrendus..the brain fog is terrible but the FATIGUE is a horror story.
When you said it in it self was a full time job it made me tear up idk why maybe it was nice to finally hear someone else acknowledge that it is a lot of work to manage a normal mundane life with fribromyalgia and the amount of people that either want to say oh yeah I have that too when they obvioulsy don't or the amount of people that just simply don't understand why you have to cancel on them. Do you ever get frustrated with friends trying to help you when you know they can't. I have a lot of all natural friends that are constantly talk about all this food and workout stuff that I just simply can't do and they think that if I do them I am magically gonna get better after 20 years of dealing with this disease. today and for the last 2 weeks ive been waking up not being able to rotate my arms without sever stabbing pain and it hinders everything even fun or relaxing things
I completely understand , and I'm glad my words resonated with you. Living with fibromyalgia is indeed a full-time job, and it's not something that's easily understood by those who haven't experienced it firsthand.
It can be incredibly frustrating when people dismiss the condition or offer well-intentioned but unrealistic advice. Many of us have friends who mean well but may not fully grasp the complexity of fibromyalgia.
The pain and limitations you're experiencing, like not being able to rotate your arms without severe stabbing pain, is incredibly frustrating and affect all aspects of life, including the things that are supposed to be fun and relaxing. I get those symptoms off and on too.
You're not alone in these feelings, and it's okay to communicate your boundaries and limitations to your friends. Finding ways to connect with others who understand your experience, like support groups or online communities, can be comforting and provide valuable insight and empathy.
Thank you for sharing your feelings. You're not alone on this journey, and there are others who genuinely understand the challenges you face. 🌼💪
The constant aches, near permanent nausea, the random spikes of pain that pulse for minutes I hate but the worse seems to be my smell. Can’t stand certain odours to the point of vomiting when I’m hit with them . Canola oil is the worst when used for frying.
So glad it’s reconsidered in Australia as a disability.
Hey Geoff! I hear you on all of that, the constant aches, the nausea, and those awful random spikes of pain are brutal. The sensitivity to smells is such a tough one too, especially when it hits you out of nowhere.
It’s good to hear that it’s recognized as a disability in Australia. Having that acknowledgment can make such a difference in getting the support and understanding we need. Hang in there, and know that you’re not alone in this. Thanks for sharing your experience, and take care! 💜
you hit most all on the head! I'm sorry to hear anyone going through the same things as me but it's also good to hear it. Thank you! Be in a soft safe space and rest!❤
Thanks for reaching out and connecting over our shared experiences. It's bittersweet, isn't it? Knowing others are going through similar struggles is tough, but there's also a comfort in not being alone in this. Your reminder to be in a soft, safe space and rest is right on point. We all need that gentle nudge to take care of ourselves amidst the chaos.
I appreciate your support and am glad the video resonated with you. Let's keep supporting each other and spreading that understanding. Take good care of yourself! ❤️
Thankyou for sharing with us. I for one have lots of similar problems as you with this difficult condition.I send you my love and laughter is my chosen medicine so I watch funny cats n dogs online.I worked as a supply teacher as I get to say can't go or can go to work. Medically it's when the brain keeps rejecting the pain Signal so,like a road hammer effectit presents as pain,❤❤❤
Chloe, thank you so much for sharing! I completely relate to what you’re saying about how the brain just won’t let up with that pain signal, but I love your attitude! Laughter really is amazing medicine, and funny cats and dogs definitely help bring those much-needed smiles. Sending you so much love right back. ❤️❤️
Oof its nice to hear you and others talking about it in the comments, nice to know im not going crazy and making up my symptoms and thats others suffer with this too
I'm sorry to hear about the challenges you're facing with your pain, and managing your symptoms. It can be incredibly frustrating when doctors dismiss symptoms as growing pains, especially when they persist and affect your daily life.
Experiencing increased pain and fatigue after exercise or prolonged standing is a common symptom in conditions like fibromyalgia, chronic fatigue syndrome and POTS. It's important to listen to your body and find a balance between staying active and not overexerting yourself. Gentle exercises, such as stretching or low-impact activities, might be more manageable and help maintain your physical well-being without exacerbating your symptoms.
Having additional health conditions like IBS can further complicate things and add to the overall challenges you're facing but they commonly go together with fibromyalgia.
Regarding your suspicion that your symptoms worsened after being diagnosed with celiac disease, it's possible that the management of celiac disease, such as dietary adjustments, can impact your overall well-being and potentially affect fibromyalgia symptoms. It's worth discussing this with your healthcare provider to explore any potential connections or strategies for managing both conditions simultaneously.
Keep advocating for yourself and seeking the help you need. Remember, you're doing your best despite the challenges you face.♥️💪
OMG, I have the exact same struggles.. thank you for this video. You get this !
Glad it was helpful! You got this!
This is a great video that communicates exactly what I experience with fibromyalgia, POTS, and other chronic illnesses. 💜
I'm all for the messy bun! I wash my hair 1 - 2 times a week, dry shampoo (non-aersol) & messy buns are my friend.
Thanks so much, Dawn! I’m glad the video resonated with you, it’s comforting to know we’re not alone in this. And yes, messy buns and dry shampoo are total lifesavers, right? 🙌 . It’s all about finding those little ways to make things easier when we need it.
I related to and understood every single point you said in this video. You made me feel so seen. I couldn't have articulated any better. Thank you
I'm really glad to hear that you connected with the video on such a personal level. It's great when you come across content that just hits home, isn't it? It's like finding someone who speaks your language and knows exactly what you're going through.
Feeling seen and understood is a powerful thing, especially when dealing with Fibromyalgia. It's like a little ray of sunshine on a cloudy day.
Thank you for sharing your appreciation.You've got this! 😊🌟
AMEN!!! I cried alot while watching this video. I covered my hair for years because it was so hard to wash.
NO.11 for me is that my Thermostat doesn't work... especially for the extremities (hands and feet). My body can not bring the temperature back up (once the facia is tight). THANK YOU KINDLY.
Hey Renee! It’s such an emotional journey dealing with all these challenges, and I’m right there with you. Covering your hair because washing it was too hard. I’ve been through similar struggles, and it’s so validating to hear I’m not alone in this. I usually just end up braiding it or putting it up in a bun.
My thermostat is also all over the place, especially with my hands and feet.
Sending you a big, warm hug. 💖
This video is absolutely fantastic.You are describing me. It is all so true and it makes me feel less lonely. I hate it that other people just don’t understand and not being believed is absolutely the worst! Being totally crippled and then questioned and told it is stress or hormones. You have highlighted all the terrible problems in society if you have an invisible illness. People shun you if you talk about it - they think you’re trying to get away with not working 😢
I'm so glad to hear that the video resonated with you and made you feel less alone. It's incredibly tough dealing with an invisible illness, especially when faced with disbelief and misunderstanding from others. The frustration of not being taken seriously, being questioned, or having your symptoms attributed to stress or hormones is a common and painful experience many of us share. Highlighting these issues is crucial because it sheds light on the societal challenges and misconceptions surrounding invisible illnesses.
Thank you for sharing your feelings and for your support of the video. It's messages like yours that show the importance of these conversations. Let's keep supporting each other and spreading awareness. 💖
At least you still have hair. My thick locs are now thin strands. I flare often but keep trying despite many down days. Yes its frustrating but I too refuse to give in. Its been 40 years and gets harder with age and more symptoms seem to arise. You don't understand unless you live this life. You described it perfectly.
Wow, 40 years of pushing through, you're such a warrior! It’s so tough when our bodies change in ways we didn’t expect, like your hair, but your resilience is incredible. I can totally relate to how frustrating it is when new symptoms keep showing up, but like you said, we refuse to give in. It’s true, no one really gets it unless they’re living this life, but we keep going, don’t we? Thank you for sharing your strength and for reminding me that we’re in this fight together. Keep holding on, you’re an inspiration!
This has been one of the best videos regarding Fibromyalgia. Thank you! I am in the UK and although we have the wonderful NHS, I am still going to see an alternative doctor, called functional medicine. I feel so sad for my husband having to see me like this.😢
Hi Sarah, Thank you so much for your kind words about the video. I'm glad you found it helpful! It means a lot to me that it could offer some insights into dealing with Fibromyalgia. Seeking out a functional medicine approach sounds like a proactive step, and I hope it brings you some relief and new perspectives on managing your symptoms.
I understand how hard it is to feel like your loved ones are affected by your health struggles. It’s clear you care deeply about how this impacts your husband. It’s okay to feel sad about it, but also know that your strength and courage in facing these challenges are incredibly admirable. You're not alone, and this community is here to support both of you through this journey. Thank you for sharing your experience, and please keep us updated on how things go with the functional medicine doctor. Sending you both lots of strength and support. 💖
Thank you so much for sharing this! I can relate to every single issue you explained. So good to know I’m not alone.
You're absolutely welcome! I'm really glad to hear that you found the video relatable and comforting. It's incredibly important to know that you're not alone in facing the challenges of living with fibromyalgia. Connecting with others who understand what you're going through can provide a strong sense of support and validation. Wishing you strength and resilience on your journey! 💪♥️
Spot on with all the struggles 👍💯 I think the one I dislike the most is being unreliable and stuffing people around. Thank you so much for your video 😇
I totally get what you mean about feeling unreliable, it's one of the hardest parts of dealing with chronic illness. I'm glad the video resonated with you. We all do the best we can, and it's important to be kind to ourselves. Thank you for watching!
First, love the bun, kinda regret bobbing my own hair now. Second... long bob cut, without bangs, gives the best trade off between ease of care/styling potential
Yes, I hear you. I love bangs but they are so high maintenance. I have been keeping my hair just straight long. No layers, no cut and I find the easiest for styling. Not so easy to wash and dry do to the length but the length also keeps it straight, so there is that.
Worst symptoms: waking up every day pain free for the first 5 minutes then in immediate agony and unable to get out of bed. Also: sudden noises. An unexpected doorbell is like being electrocuted.
I had a spinal injury and have been wheelchair bound for 22 years. I had symptoms of fibromyalgia for my entire life. I was fortunate in that I was taken seriously when it got much worse and diagnosed with fibromyalgia in 2019 aged 43 by my GP and then confirmed by a Consultant rheumatologist. My heart goes out to anyone diagnosed with this condition.
Your hair looks fabulous by the way. I also have very long hair and it’s very thick. I wash mine 2-3 times a week. Yes it’s a major challenge but so worth it. I’m in Scotland and it’s freezing here to!
Thank you for your amazing video x
Ugh, that sudden pain after those first few minutes of peace is the absolute worst! It’s like your body teases you for a split second, then bam, back to the grind. And don’t even get me started on sudden noises-they legit feel like electric shocks. I flinch so hard at something as simple as a sneeze.
It’s amazing that you got taken seriously with your diagnosis, but 22 years in a wheelchair and dealing with fibro symptoms your whole life? That’s a tough road.
Also, thank you for the hair compliment! I totally feel you on the long, thick hair thing-it’s a whole task by itself!
Sending warmth from here and a big hug 🤗
Just subscribed, you defined my problems with fibromyalgia... and the problems after my brain aneurysm ruptures...
Thank you so much for subscribing, and I'm glad to hear that my video resonated with you.. Living with such health challenges is incredibly tough. But so are you. 💪♥️
My new family doctor is fresh off of residency and said fibromyalgia can be tricky and has many symptoms. I also know that the progressively worsening neuropathy is something else completely. Hence, the need to see a neurologist again. Pain and explaining how it feels is difficult. The pain scales are tricky. I still work full time, but I drag my ass around often just to get stuff done. The fatigue,back pain, neuropathy, memory/comprehension, focus, and more. The anxiety and depression is so real. The mild dose of a antidepressant helps with sleep and keeps me from falling apart at work, rather falling apart easier/faster, like total meltdown.
I'm so sick of being sick. I'll keep working until I can't do it anymore, and then hope my works disability will be enough.
I'm really sorry to hear that you're going through all of this, it sounds incredibly tough. Managing fibromyalgia, anxiety and depression, is no small feat. Your determination to keep working despite the challenges is admirable.
It's great that you're seeking medical help, including seeing a neurologist. Remember, it's okay to ask for help and take it easy on yourself. Finding moments of laughter even in the midst of all this, can be a powerful coping mechanism. Stay strong! 😊
I’m listening to this again, thank you so much for your words. So true.
Thank you so much for listening (again!) That means the world to me. 💛 I'm so glad the words resonate with you. Living with fibromyalgia can feel so isolating sometimes, but knowing we’re not alone in this makes all the difference. Sending you a big, gentle hug. ❤️
@ Thank you so much, I love the hug! I hope you know you’re really valuable!