I work part time and barely scrape through, but they are very helpful and understanding. I have fibromyalgia for about 18 years, and I had to quit a well paid job as the stress was really triggering me. I always thought I was just a spaz and useless, but got diagnosed at 41. Thank you for your wonderful vlogs, especially for a guy having this horrible journey 😢
Thank you for taking the time to share your story with me, and I'm truly touched by your kind words. Living with fibromyalgia is an incredibly challenging journey, and it takes immense strength to navigate through it. I'm really sorry to hear about the difficulties you've faced, including having to leave a well-paid job due to the stress it was causing you. I understand that very well as I went through the same thing. Please know that you are absolutely not alone in this. I'm honoured to hear that my vlogs have been helpful to you on this difficult journey. It's important to recognize that you are useless. You are a resilient and strong individual who is facing challenges head-on, and that's something to be proud of. Sending you lots of positive vibes and strength as you continue to navigate your fibromyalgia journey. 💪💙😊
I was "diagnosed" with fibromyalgia around 2005. I was on pain killers, anti-depressants, anti-anxiety medications, and others for 15 years. I finally saw a naturopathic doctor. They found high levels of heavy metals. They also found that some of my tissues were very fibrous and tight...esp. my fascia. I detoxed from heavy metals, fluoride, and calcification with boron, organic cilantro, fulvic/humic acid (Black Diamond powder), C60 from Dr. Darrell Wolf. I'm off all meds. I still have muscle pain due to scoliosis and a herniated disc, so I do fasciablasting. I use a power plate and light weight lifting. I do meditation and grounding. ❤
That's quite a journey you've had since your diagnosis in 2005. It's impressive how you've navigated through various treatments and medications to finally find something that works for you. The naturopathic approach revealing high levels of heavy metals and tight fascia sounds like it was a significant turning point. It's great to hear that the detox methods have helped you get off the medications. Dealing with muscle pain from scoliosis and a herniated disc is tough, but it sounds like you're doing an amazing job managing it. Plus, meditation and grounding are such powerful tools. Keep up the great work and taking care of yourself!
Thank you for sharing your story in such detail. I relate to the diagnosis part a lot. I was diagnosed 7 months ago after going to doctors for 3 years. I didn't suspect fibromyalgia for all those years because my main issue was weakness (or let's say fatigue), but it was so extreme that the pain was not even that important. I was always very pain tolerant, but it just got worse, so I realized it might be fibromyalgia. I searched for a doctor who specializes in it because I live in a small country, so no wonder why so many doctors whom I visited for 3 years didn't even know fibromyalgia existed. I went to the doctor (2nd rheumatologist, because 1st one didn't suspect it) and she straight away diagnosed it. I really didn't want to hear it, I hoped it was not it because I knew it's for the rest of one's life and there is no cure. I felt bad, so so bad that I kind of got into a depression for some time, my fibro even got worse just because of knowing I have it and there is no way back. Overall my health improved since then, but it's not an easy job to fight with not only the symptoms but also knowing you are limited in this life. Also, another part I really related was pushing oneself... and in fact more and more stress, whether physical or mental, just makes fibromyalgia worse. One thing it taught me was to relax and I think that's what fibromyalgia is about. I was born into a very hard working family who stress themselves out even more than I ever did and I know for myself that psychological and physical stress was the ultimate cause for my fibromyalgia, so now I finally give myself permission to rest and relax. I needed to literally learn it, because constant pressure was the norm, and it should never be. Resting is absolutely important for everybody. Again, thank you for sharing, it's good to hear stories, it makes you feel less alone.
Thank you so much for sharing your story as well. Not stressing and relaxing are two things I’m still learning. My body has suffered so many stresses, from getting mono to being in several car accidents, to being abused as a child, to having had five children (it’s very stressful on your body) to my profession choice as a midwife, my body has suffered a lot. It got to a point that it said enough and I could no longer ignore it. The two biggest things I can do to avoid flares is to avoid emotional or physical stress, along with avoiding big weather changes. I’m so glad you are learning to put yourself first and I’m so glad you shared your story. I wish you all the best in your management of Fibromyalgia.
@@tt_looking_glass That's really important to avoid stress, but weather is uncontrollable and by body is like barometer as well. Thank you for reply, I wish you all the best too!
Oh my! You said so much that I experience! I grew up in an extremely happy large family and we worked hard! I’m extremely hard working but my 51 years w/fibro have finally made me a semi-invalid. I’m trying so hard to teach my old mind and body to relax and breathe.
@@Alipotamus I hope you find a way to relax yourself. I must mention that I have updates on my story. Just some months ago I found out that I actually have Lyme disease with other co-infections spread by ticks. I probably would recommend doing extensive tests (particularly Vibrant test, that's the name of it) for all with fibromyalgia, because it could be the light at the end of the tunnel. I did the basic Lyme tests before and Lyme was not found. That's why I highly recommend good, extensive testing, which also shows Babesia and Bartonella. Now on my way to healing and although I can't share about improvements yet, since the treatment is around 6 months to a couple of years, but at least it gives a lot of hope finally.
Thank you for sharing your story. I think you are brave and courageous for doing so. I have had Fibro for at least 30 yrs. It started with a being thrown out of car accident miracle I lived! Drs at first told me it was in my head. But one day I found a pain mngt hospital that gave me a diagnoses of Myofacia pain syndrom which today. Fibromyalgia. It was so liberating for me as I knew I wasn't crazy 😜 I have 4 grown children ( love being a mother ) After yrs of meds and going to a bunch of specialist I have really good doctor today. life is better getting off Meds. I take CBD, Hydrotherapy, Wim hoff breathi ng, I eat foods that don't inflame me and natural remedies. I still get loads pain but with self care My faith in Christ and fighting it in my mind I still am alive ❤️God bless
Thank you for sharing your story as well. I have taken CBD before but haven’t seen a huge difference. I would like to give it a try again. Maybe I’ll make a video about it. Faith is something that also gets me through a lot.
Thank you so much, it truly means a lot to connect with someone who gets what it's like to live with chronic illness. The reminder that we're not alone in this journey is incredibly comforting. Gentle hugs back to you!
Thank you so much for sharing your story ❤. I can relate (different diagnoses), but a lot of the same symptoms... I don't know how you did it, having and raising 5 children! You are an amazing woman!!! Your story is truly inspiring. I never got the chance to have kids, considering every doctor told me to never get pregnant, so I didn't... I'm finally on my path to healing now, but it's a little too late, considering I'm 41. But I definitely want to do something to help others who deal with chronic illness as well. Sorry for the rant! Thank you for sharing, and God bless you!
Hey, this is what this channel is about. A safe place to rant and connect. Thank you for sharing your story. Everyone’s story is different and so will each person’s healing. Thank you for stopping by.
Wow. Sooo much of what you said resonated with me. I struggled for 10 years with horrendous symptoms. I grew up in an emotional and physically abusive household so had the trauma from that but I also presented signs of hypermobility. The past trauma and hypermobility ticked the boxes for Fibro. Like you I dreamed of a big family but could physically and mentally only have one child. I genuinely felt that's all I could manage another child with being so ill. Major props to you for having 5 and making it through with the living hell that is fibro. I hope you are well and thriving today. Thanks for sharing your story.
Thank you so much for sharing your own journey with fibromyalgia and for connecting with my story. It sounds like you’ve faced significant challenges with both your health and your past experiences. Managing your symptoms and the impacts of your early environment shows great strength. Balancing the dreams of a big family with the realities of chronic illness involves tough decisions, and making the best choice for you and your family requires deep self-understanding. Kudos to you for doing what is best for everyone involved. I’m sending you all my best wishes for your continued well-being and health. Your support means a lot, and I hope you also find moments of joy and peace amidst the challenges. Take care, and thank you again for your kind words and for reaching out.
Hello! This is a helpful video. Thank you. I was born in the mid 1900s. I have had fibromyalgia with major depression since about 1992. I was diagnosed in about 2017 and I am learning more. Knowledge is very helpful to me. Fibromyalgia in me has lead to many other chronic illnesses, RLS, FC, I am also ADHD, autistic and I am a survivor of trauma too! The trauma caused the fibromyalgia. Listening to people who know what it is like because they are fellow sufferers is comforting for me here. Thank you. Bess in UK
Really glad to hear you found the video useful! It sounds like you've been navigating quite the health journey. Getting diagnosed a bit later on must have been a mix of relief and a new challenge, but it's awesome you're diving into learning more. Knowledge can be such a game-changer in understanding and managing everything. Hearing from others who really get what it's like can make all the difference. It's like finding your tribe, a group of people who nod along because they've been there too. I'm so glad you're finding comfort in this community. Thanks for dropping a line and sharing a bit of your journey.
Thankyou for sharing your story in such detail! I can relate to so much of this myself, although I have lupus and CFS. But also migraine and DDD. My mother has fibromyalgia though and her experience before diagnosis was very similar to yours! I 100% relate to what you said about being a high-achiever and always pushing yourself before your diagnosis (as you know from my channel's content lol). I love that you're sharing such valuable info with others! We need more voices like yours in this space. Keep creating! You're changing lives!
Thank you and thank you for watching. I am definitely learning to live a slower pace life and I’m loving it. There is such pride in our society for being busy and being stressed. No wonder chronic illness is on the rise.
@@tt_looking_glass Yes! I always say that because I truly believe hustle culture is causing a lot of this. We can not operate in survival mode and not get proper sleep and regular rest without consequence.
Hey, my mom had fibro as well, all my life. And then me... after 3 babies, whammy ME\CFS and we agree the conditions are different t but have overlap so we support each other
Thank you so much for sharing your story. It’s been really hard because I got sick with a viral infection, and then out nowhere start having weird symptoms extremely fatigue, chronic pain, I couldn’t even moved, lightheaded it’s been awful. Run like a 10000 different test, everything came negative. When to different doctors everyone keep saying that they were nothing wrong with me,it has been very lonely journey. But finally I found a rheumatologist doctor and we was able to diagnose and figure it out what I have. I was so reliefs to figure it out to finally know what’s going on with me, but at the same time was scary because now I have to adapt to my conditions, change my life the perspective of my body, knowing my boundaries and patience with my body. Like I said it’s been very hard because I use to be super active, strong and know it’s very different …thank you once again for sharing your story it giving me hope knowing that 🙏🏻🙏🏻 💜💜
You are welcome. I hear you friend. It is a hard journey! But it is possible to see yourself in new light. This illness has definitely changed how I do things but I still live my life. I’m glad my video brought comfort and hope to you. This is exactly my goal for this channel. Don’t lose hope that someday we may find a better way to manage this condition. Meanwhile we live the best life we can with the symptoms we are experiencing at the time. Take advantage of good days and be patient on the bad days. Savour the little things, the important moments. Celebrate every little win. All the best in your healing journey and I hope you stick around for future videos.
I usually don't comment on videos, but your video was so inspiring...I have fibro and I have other mental and physical diagnosis as well...And it's very possible I have a couple more diagnosis that have been missed...I almost don't want to find out cuz it's just more to deal with...I'm not trying to sound like I am feeling sorry for myself because I figure it could always be worse...But as you know it's hard...Real hard...You are very strong...Keep doing what you're doing...You are helping a lot of people...God bless you...
Hearing that my video inspired you, especially as you face fibromyalgia and other challenges, truly means a lot. Feeling hesitant about discovering more diagnoses is understandable; it's tough enough handling what's already on your plate. Your strength is clear in how you're managing, and it doesn't sound like self-pity at all, it's resilience. You're not alone in this struggle, and your words encourage me just as much. Keep holding on to that strength, and thank you for your support. You're helping others too, just by sharing your story. God bless! 🌟
Hello Nice to meet you New Subscriber here from Amman Jordan 🇯🇴 My friend suffers from this condition so thanks for the information It makes me more compassionate toward her and others with Fibromyalgia
Nice to meet you Elizabeth, I love when people introduce themselves. Welcome to my channel and this community. (A little side note, I have planning a trip to Amman, it looks so beautiful and such lovely people). It is so nice of you to educate yourself about your friend’s condition. What an amazing friend you are. I don’t know if you have seen my other video on Fibromyalgia symptoms. “Fibromyalgia symptoms. What you need to know.” It’s a very informative video too.
Whenever you decide to visit Amman,please let me know I own a Boutique Hotel here It’s on the Internet The Conroy Boutique Hotel I’m also on Facebook Take care
I was finally diagnosed after the third child. My symptoms got very bad with motherhood and with the sleepless nights. I became unable to walk or use my hands. I did not stop until I found a final answer. I was completely handicaped and unable to sleep. It has been two years of diagnose and I finally accept it. All tender points are tender and all symptoms are there, plus additional horrible pain in unpredictable places at unpredictable times. What a life.
My symptoms all go worse with pregnancy and early motherhood but fortunately I never lost mobility. It must be so hard to balance motherhood and disability. How are you doing lately? How old is your kid/s?
I just watched your vlog about flare ups - I’m so glad somebody knows how I’m feeling - I haven’t been diagnosed yet - starting blood work on the 13th - this has been on going for years so I really hope they can rule out what it isn’t and I finally get a diagnosis ☺️thanks for the vlog hugs xx
There are so many people suffering from chronic illnesses and yet not many people talk about it. Even worse, not many people are believed. I hope your bloodwork brings you some answers. I want you to know that it’s absolutely possible to live an amazing life in spite of this awful illness. I had to adjust my life and there are times that are hard but I have an amazing family, I travel and I explore. I do the things I most love. As time passes I get less “bothered” by my flares and just take them without fighting it. Like when I get my period. I don’t like them, they influence how I feel and what I can do but I deal with them every single month. Hopefully for not too much longer 😂 lol!
@@tt_looking_glass you have certainly inspired and reassured me😘I’ve subscribed to your vlog and you know when you realise ‘hey I’m not imagining this’ !! and when the pain gets really bad the fact that I’m not being a ‘big baby’ and I’m actually going through a real illness - next step is hoping my Dr finally can acknowledge what is wrong - fingers crossed 🤞🏻and eyes if it helps 😂x
Great story . I can totally relate. As a child I was always sick and my mom would alway say it’s a shame your always sick. 🤕 I wasn’t diagnosed until 27. I’m 30 now. I was at peace when I found out. Because I knew I wasn’t crazy . I’m in pain non stop and never have any energy
I hear you. It's not easy living in pain 24/7 but the worse for me has always been not being understood and being criticized, specially by those I love. I hope you have good support. You don't want to miss my next video, it's titled "If you could see my illness". It's an artistic representation of what is like to live in pain. It will be up on Mar 18.
@@tt_looking_glass girl I totally understand you. I don’t have much of a support system. My state of pain makes others uncomfortable. It’s definitely hard dating too.
I always had hay fever when I was young but developed wide spread pain when I was 15 and I felt so tired . My dad was bad tempered and my mum had a nervous breakdown and became mentally ill . I am now 59 and still have it .
I’m sorry to hear you had it so rough. I often wonder how much physical and mental trauma contributes to onset of symptoms. I believe I will still have Fibromyalgia when I’m your age (I’m 48 now) I just hope that will have a way to manage it a little bit better. Take care of yourself and thanks for watching. I hope you will enjoy my other videos as well.
Your story and mine…wow our stories are weirdly similar and some opposite stuff too! I’m also weird! Sick from birth. Took years to put things together. Was told when I was little that I had hypoglycemia and asthma. Then when I was 35ish Fibromyalgia then at 50 Postural Orthostatic Tachycardia Syndrome. Im weird! I found you through a short! You cracked me up so I subscribed. 🦋💋💕
I’m so glad my shorts are reaching the right people. Thank you for subscribing and for sharing a little bit of your story. I’m glad you are enjoying the videos. ❤️
OCD from 3 then a fall 17 broken tailbone caused pelvic pain the CFS or neurosthenia in 1998 then pots 2006 to 2008 2017 fybromyalgia so all same illness now heds diagnosis àspergers
I’m so sorry you’ve been dealing with this for so long, but I’m glad you finally got a diagnosis. It is such a long road, especially when things get progressively worse before you even know what’s going on. You’re not alone in this, and it’s a big step forward just having a name for it. I hope you can find some relief and ways to manage it better now that you have some answers. Take it one day at a time, and know we’re all here with you on this journey. 💜
You are not weird. Anyway I was just diagnosed two weeks ago…and for the past 4 days I have been so sick..I was searching for some kind of answers , and found you. I don’t want to watch the newest one….I need your input…so maybe I won’t feel like I am Crazy . .
Welcome to the channel and to the community. Thank you for stopping by. First, I'm so sorry you have been diagnosed with this terrible condition. Second, don't despair. Many of us live with this. It's hard, it changes your life and you will find out who your friends really are. However, you can live a fulfilling life. It requires patience, support and determination but you can see it through my journey in my channel. The highs and the lows and how I still manage to have fun in my life. Feel free to explore my other videos and don't be shy to comment. I answer every single comment. ❤️
My 51 years with fibromyalgia has been progressively worse. My never ending pain, inability to sleep and anxiety have made me a semi-invalid. I have suffered without any pain relief here 🇺🇸 due to the medical professionals fear of losing their livelihoods from Govt. I have been struggling with suicidal thoughts and doing my best to hang on as my husband is older and with Parkinson’s. I too am a type A perfectionist, very active, wanted too, and had 6 wonderful kids, we moved 23 times and are done. I experienced trauma and still deal with PTSD. All my babies were c-sections.
I'm so sorry to hear about the immense challenges you're facing with fibromyalgia and the additional struggles in your life. Living with chronic pain, sleep disturbances, anxiety, and managing the care for your husband with Parkinson's - all of this is incredibly demanding, both physically and emotionally. The fact that you've also been dealing with this without adequate pain relief adds another layer of difficulty. It's concerning to hear that you're experiencing suicidal thoughts. Please know that your feelings are valid, but it's also important to seek support during these times. Whether it's talking to a mental health professional, reaching out to a support group, or confiding in a trusted friend or family member, you don't have to go through this alone. Your mental and emotional health are just as important as your physical health. Your strength and resilience through all of this - raising six children, moving multiple times, dealing with PTSD and trauma - are truly remarkable. Remember to give yourself credit for the immense challenges you've overcome and continue to face. You are a strong individual, and your perseverance is inspiring. Please take care of yourself and reach out for the support you need. You deserve compassion, understanding, and appropriate care. I'm sending you thoughts of strength and hope, and I'm here to offer support and a listening ear. 🌟💖🙏
Mine is genetic, then I got tonsillitis and strep throat at same time. Got bad abscess, then had to get tonsils out. Also had problems with with employee in church as well. After I recovered I didn’t have my regular energy. Before would go on walks go all day. Also was going througH MENOPAUSE. MY ENTIRE life changed.
Many people report their illness starting after a viral infection or accident. I believe there is a genetic component that gets triggered by some trauma. I’m perimenopausal, and ohhh boy! Has that created challenges for all my chronic illnesses. It’s like my body doesn’t know what is going on!
Thanks so much for your kind words! You can follow me on Instagram @tt_looking_glass as well as on Facebook for more updates and support. I try to keep the community connected and supportive across all platforms. Hang in there, and feel free to reach out anytime! Take care, Mark 💖
I have fibromyalgia n chronic fatigue syndrome, was diagnosed 20 years ago l now am 74 , every time l have a flare , l am not in touch with anyone or anything! it’s Terrible everything just mounts up as far as my house work , l stop going to Doctor became l was so sick l couldn’t even get dressed this stuff lasted on me several months sometimes, on top of it you have new symptoms , like pain in an area where you didn’t hurt before , another thing that’s happening to your body is your autoimmune disease is attaching itself , but the only thing that keeps yourselves from giving up is God l am a firm believer in Jesus Christ and the way he created me to be , strong with a willingness and stubbornness to keep going , it’s right that or die ,and l am also not afraid of death for l know l will have a spot in heaven thank yo Jesus Amen 🙏
I’m so sorry you go through all of that. It is not easy at all to go through a flare. I do let go of taking care of myself when I’m in a flare too. The first thing it happens is I have no energy to cook and so I eat terribly. Which in turn does not make me feel any better. Faith has definitely kept me going many times. At the end of the end it’s all we have. Keep going. It’s what He want us to do. It’s why we are here.
Thank you so much for pointing that out. No one has ever noticed or said anything. Yay for dyslexia. I’ll actually make a video about that and will use this as an example. I will fix the intro and will make it is correct in my future videos. But yeah, it’s not easy when your brain plays trick on you. But I’m glad you enjoyed the video regardless.
@@tt_looking_glass 110%!!! I have it too! And looking into getting diagnosed with fibro...loved the video hun ty so much! 😘 I also run a business so I was hesitant, but people are polite and don't say anything you'll never know! We write it, so our brain sees it right haha 😄 xoxo ❤️
@@mromak3086 yeah. Totally. I really appreciate you pointing it out. I’m the kind of person who takes mistakes as opportunities. It just gave me a video idea too. I’m not ashamed of my flaws, when people point out my mistakes in a respectful way it allows me to develop coping mechanism. I will make sure more than one person proof read before posting the next one. I want this channel to be real and raw and this is what just happens. When I make a video about it I hope it will make other people not feel so alone or ashamed of the things that we struggle on a daily basis. This channel is about how I handle life with all of my imperfections.
So I just found this video and a bunch of others. I think I have fibromyalgia, i have all the symptom, all of them and some more. My blood test are perfect like I should run a marathon and hit the gym daily. My only "bad" exam is an ex ray of my spine that is curving due to the contraction of my muscle on my neck, in fact that is the part that hurt the most. Afte years a went again to my family doctor after I stumble upon an article on fibromyalgia. He said it's not a real, that I cannot be because it's not a diagnosis it's not a real illness. He said is because of buxism(grinding teeth) of course it's not I even went to the dentist which confirmed it's not. I felt deflated I don't really know where I should go to be heard. I'm tired to neglect all this pain and go on as nothing is wrong with me, but at the same time I doubt everything after years of being told I'm healthy and I'm just stressed. I really don't know what to do
Was wondering did you have aches and pains and hurt everywhere painfull getting touched burning skin symptoms very sore arms feet and legs all the time
@@tt_looking_glass yes this is what I’ve had plus most of the stuff you say but I’ve never really had allergies but things like psoriasis and even skin changes likes redness or purple to hands and feet my rheumatologist hasnt actually diagnosed me been into my sixth year of this
I think a lot of my skin issues are related to my Mast Cell Activation Syndrome. When you have multiple chronic illnesses it’s hard to know what is what. I’m so sorry you have been suffering for so long without any answers. Unfortunately that seems to be the reality of a lot of people.
Have you thought of stop eating plant seed oils. Not easy cause it is in most processed foods these days. Im doing this right now an feel better slowly each week that passes.
I have not thought of it. I usually try to avoid processed foods and try to eat a plant based diet but sometimes I do a good job and other times not so much. So know know what is the reasoning behind? I will look into it. Thanks for the suggestion.
I was allergic to oriducts perfumes etc at 3 long before seasonal allergies nall year round found out its oart of sensory processing disorder and autism i was also travel sick from 2 to
Thanks for sharing your story! It’s interesting to hear about your early struggles with allergies and sensory issues, and how they connect to sensory processing disorder and autism.
I have fibromyalgia and iam a male it started when is was 13 now I am 15 at first my parents said you are making things up don't lie but now they understand me
Wow, starting with fibromyalgia so young must be incredibly tough. I’m sorry you had to deal with people not believing you, especially your parents at first, that’s got to feel so frustrating. I’m really glad to hear that they understand you now though. It’s such a huge relief when the people closest to us finally get what we’re going through. Fibro is hard enough without having to prove it to others, right? I hope you’re finding some support that helps you feel understood beyond your family too. You’re really strong for getting through this, especially at such a young age. Keep speaking up for yourself, your experience is real and important!
Yes I do have many skin issues but have recently also diagnosed with Mast Cells Activation Syndrome which attack mostly skin and your gut. So it may be related.
Hang in there friend. It’s hard to believe you will ever feel better again, but I promise you will. This illness does make us practice patience for sure. I am looking at doing a video on tips to help ease the pain during a flare as well a video on how to keep yourself busy and distracted during a flare. Stay tuned.
Of course. I take Low Dose Naltrexone 4.5mg once a day and a muscle relaxant called Tizanidine 4mg before bed time. I have also started doing Ketamine/Lidocaine infusions once every two month and it’s making a big difference. Then I take oxycodone for really bad flare days.
@@maryetienne2821 some people see benefits from it but from my research it may work at the beginning but after a while it stops working and there are several side effects including weight gain. It is also a drug that you can’t just stop taking. You have to wean off or you can experience withdrawals. There aren’t a lot of options for fibromyalgia but LDN works really well for me with no side effects at all. I recently have also learned that it can be used to treat MCAS which is a condition I have been diagnosed recently so I felt I was really on the right track taking it.
I don't know what kind of fibromyalgia people have, but in my case I don't give myself permission to stay in bed, or at home, I've no choice... And I get worse every year pass, last year I still could go on my bike, this year is difficult even to get upstairs... All my body is collapsing, I'm constantly in dizziness, nausea and exhausted... I don't sleep, I don't eat much. Or I don't have fibromyalgia or certain people don't have, or is very different for each one of us. When you say 3 children, i didn't belive it, the pain and all of the other symptoms must been horrible 😢 and you went through again, twice?!! I can't even have sex or any exercise, is not just the pain in the moment is the pain carry and gets worse, till gets better, plus every day I noticed I'm more tiered, I do less, and I think, I do it tomorrow... that are the times I allow myself coz I've no choice.. Please share what medicine you took, or anything else that helps, specially the fatigue 😢 ❤ All my symptoms also started after a car accident and very stressful events, head impact, scan show nothing, first symptoms, difficulty concentration, ringing ears, shaking hands, 1 month later the weird pains, I vomited, fainted, more scan and nothing... In the last 7 years I managed, this last year is going down, big time. Sorry and thank you ❤
I'm really sorry to hear about your struggles. Fibromyalgia does indeed affect everyone differently, and your description highlights the immense challenges you're facing. It's not uncommon for symptoms to intensify after a stressful event or trauma, such as a car accident. Thank you for sharing your story, and don't hesitate to reach out if you need someone to talk to. Wishing you strength and moments of relief amidst these challenges. ❤️
I'm glad to hear that trigger points are no longer a strict requirement for diagnosis. Many people, like you, may not have them, but that doesn't diminish the validity of their Fibromyalgia experience. It's essential to acknowledge that Fibromyalgia is a complex condition with a range of symptoms and manifestations, and diagnosis criteria have to adapt to reflect this complexity. Thank you for sharing your insight and helping to raise awareness about the diversity of experiences within the Fibromyalgia community. 🌟💪
I can't bend my knees at this moment 😅😢 just cleaning the tops, ta bricando Eu quero aprender com vç, porque eu não estou conseguindo não, aqui in London eles gozam, e ainda dizem que eu não posso ter outra doença porque tenho fibromyalgia, imagina, eu estou neste momento trocando de médico, mas eu acho que apenas o endereço vai mudar 😅
Sinto muito ouvir que você está passando por isso. É incrivelmente frustrante quando os médicos não levam a sério os sintomas adicionais, especialmente quando você já tem fibromialgia. A mudança de médico pode trazer novas esperanças, e espero sinceramente que você encontre um profissional que compreenda sua situação e ofereça o apoio necessário. Quanto ao desafio de viver com dor e lidar com a incompreensão dos outros, eu entendo como isso é difícil, especialmente em um ambiente onde as pessoas não compreendem completamente a fibromialgia e suas ramificações. A busca por um médico que ouça e entenda seus sintomas é um passo importante, e eu espero que você encontre o suporte necessário. Se há algo específico em que posso ajudar ou se você gostaria de compartilhar mais sobre sua experiência, por favor, sinta-se à vontade para compartilhar. Estou aqui para ajudar no que for possível. Desejo a você força e perseverança nessa jornada. 😊
Fibromyalgia is difficult disease, but diagnosis itself is difficult----- no lab test makes diagnosis. Treatment is not easy either. Lot of psycho- somatic issues are there. Disease is life-long. Treatment is life-long----- and treatment is not curative. Treatment is symptomatic.
Hello from Canada. Funny (but not funny) story, I lived in Holland for 6 years between 1990 and 1996 and also had a car accident with a pretty bad whiplash. That is when my fibromyalgia started. I didn’t get diagnosed until 2006 here in Canada.
@@robbertdekok8987 yes, I also have chronic fatigue, chronic migraines (check my latest video for that one), POTS (postural orthostatic tachycardia syndrome) IBS (irritable bowel syndrome) and MCAS (mass cell activation syndrome). There are many things I love about Holland and I absolutely love going back on holidays but my life was very turbulent and traumatic while I lived there and Canada is an easier country to raise a large family (I have 5 kids) so for those reasons I prefer Canada to live.
I work part time and barely scrape through, but they are very helpful and understanding. I have fibromyalgia for about 18 years, and I had to quit a well paid job as the stress was really triggering me. I always thought I was just a spaz and useless, but got diagnosed at 41. Thank you for your wonderful vlogs, especially for a guy having this horrible journey 😢
Thank you for taking the time to share your story with me, and I'm truly touched by your kind words. Living with fibromyalgia is an incredibly challenging journey, and it takes immense strength to navigate through it.
I'm really sorry to hear about the difficulties you've faced, including having to leave a well-paid job due to the stress it was causing you. I understand that very well as I went through the same thing. Please know that you are absolutely not alone in this.
I'm honoured to hear that my vlogs have been helpful to you on this difficult journey. It's important to recognize that you are useless. You are a resilient and strong individual who is facing challenges head-on, and that's something to be proud of.
Sending you lots of positive vibes and strength as you continue to navigate your fibromyalgia journey. 💪💙😊
❤
27 for me do you have hypomobility is it all over or in certain areas
@@Truerealism747 yes I do, how about yourself?
I was "diagnosed" with fibromyalgia around 2005. I was on pain killers, anti-depressants, anti-anxiety medications, and others for 15 years. I finally saw a naturopathic doctor. They found high levels of heavy metals. They also found that some of my tissues were very fibrous and tight...esp. my fascia.
I detoxed from heavy metals, fluoride, and calcification with boron, organic cilantro, fulvic/humic acid (Black Diamond powder), C60 from Dr. Darrell Wolf. I'm off all meds. I still have muscle pain due to scoliosis and a herniated disc, so I do fasciablasting. I use a power plate and light weight lifting. I do meditation and grounding. ❤
That's quite a journey you've had since your diagnosis in 2005. It's impressive how you've navigated through various treatments and medications to finally find something that works for you. The naturopathic approach revealing high levels of heavy metals and tight fascia sounds like it was a significant turning point. It's great to hear that the detox methods have helped you get off the medications. Dealing with muscle pain from scoliosis and a herniated disc is tough, but it sounds like you're doing an amazing job managing it. Plus, meditation and grounding are such powerful tools. Keep up the great work and taking care of yourself!
Thank you for sharing your story in such detail. I relate to the diagnosis part a lot. I was diagnosed 7 months ago after going to doctors for 3 years. I didn't suspect fibromyalgia for all those years because my main issue was weakness (or let's say fatigue), but it was so extreme that the pain was not even that important. I was always very pain tolerant, but it just got worse, so I realized it might be fibromyalgia. I searched for a doctor who specializes in it because I live in a small country, so no wonder why so many doctors whom I visited for 3 years didn't even know fibromyalgia existed. I went to the doctor (2nd rheumatologist, because 1st one didn't suspect it) and she straight away diagnosed it. I really didn't want to hear it, I hoped it was not it because I knew it's for the rest of one's life and there is no cure. I felt bad, so so bad that I kind of got into a depression for some time, my fibro even got worse just because of knowing I have it and there is no way back. Overall my health improved since then, but it's not an easy job to fight with not only the symptoms but also knowing you are limited in this life. Also, another part I really related was pushing oneself... and in fact more and more stress, whether physical or mental, just makes fibromyalgia worse. One thing it taught me was to relax and I think that's what fibromyalgia is about. I was born into a very hard working family who stress themselves out even more than I ever did and I know for myself that psychological and physical stress was the ultimate cause for my fibromyalgia, so now I finally give myself permission to rest and relax. I needed to literally learn it, because constant pressure was the norm, and it should never be. Resting is absolutely important for everybody. Again, thank you for sharing, it's good to hear stories, it makes you feel less alone.
Thank you so much for sharing your story as well. Not stressing and relaxing are two things I’m still learning. My body has suffered so many stresses, from getting mono to being in several car accidents, to being abused as a child, to having had five children (it’s very stressful on your body) to my profession choice as a midwife, my body has suffered a lot. It got to a point that it said enough and I could no longer ignore it. The two biggest things I can do to avoid flares is to avoid emotional or physical stress, along with avoiding big weather changes. I’m so glad you are learning to put yourself first and I’m so glad you shared your story. I wish you all the best in your management of Fibromyalgia.
@@tt_looking_glass That's really important to avoid stress, but weather is uncontrollable and by body is like barometer as well. Thank you for reply, I wish you all the best too!
Oh my! You said so much that I experience! I grew up in an extremely happy large family and we worked hard! I’m extremely hard working but my 51 years w/fibro have finally made me a semi-invalid. I’m trying so hard to teach my old mind and body to relax and breathe.
@@Alipotamus I hope you find a way to relax yourself. I must mention that I have updates on my story. Just some months ago I found out that I actually have Lyme disease with other co-infections spread by ticks. I probably would recommend doing extensive tests (particularly Vibrant test, that's the name of it) for all with fibromyalgia, because it could be the light at the end of the tunnel. I did the basic Lyme tests before and Lyme was not found. That's why I highly recommend good, extensive testing, which also shows Babesia and Bartonella. Now on my way to healing and although I can't share about improvements yet, since the treatment is around 6 months to a couple of years, but at least it gives a lot of hope finally.
Thank you for sharing your story. I think you are brave and courageous for doing so. I have had Fibro for at least 30 yrs. It started with a being thrown out of car accident miracle I lived! Drs at first told me it was in my head. But one day I found a pain mngt hospital that gave me a diagnoses of Myofacia pain syndrom which today. Fibromyalgia. It was so liberating for me as I knew I wasn't crazy 😜 I have 4
grown children ( love being a mother )
After yrs of meds and going to a bunch of specialist I have really good doctor today. life is better getting off Meds. I take CBD, Hydrotherapy, Wim hoff breathi ng, I eat foods that don't inflame me and natural remedies. I still get loads pain but with self care My faith in Christ and fighting it in my mind I still am alive ❤️God bless
Thank you for sharing your story as well. I have taken CBD before but haven’t seen a huge difference. I would like to give it a try again. Maybe I’ll make a video about it. Faith is something that also gets me through a lot.
Very much relate. I’m so sorry you’re also dealing with this chronic illness. We are not alone! “Gentle Hugs” to you.
Thank you so much, it truly means a lot to connect with someone who gets what it's like to live with chronic illness. The reminder that we're not alone in this journey is incredibly comforting. Gentle hugs back to you!
Thank you so much for sharing your story ❤. I can relate (different diagnoses), but a lot of the same symptoms... I don't know how you did it, having and raising 5 children! You are an amazing woman!!! Your story is truly inspiring. I never got the chance to have kids, considering every doctor told me to never get pregnant, so I didn't... I'm finally on my path to healing now, but it's a little too late, considering I'm 41. But I definitely want to do something to help others who deal with chronic illness as well. Sorry for the rant! Thank you for sharing, and God bless you!
Hey, this is what this channel is about. A safe place to rant and connect. Thank you for sharing your story. Everyone’s story is different and so will each person’s healing. Thank you for stopping by.
Such an emotional story. Sending love my friend! Thanks for spreading the word 🙌.
Thank you so much for your kind comment. Yes! Let’s spread awareness.
Amen
I have Fibromyalgia and that’s just one of my chronic illnesses, it’s tough, everyday is a challenge.
I also have multiple chronic illnesses. It’s really tough because when one is not flaring the other are. There is never a break. Thanks for watching.
@@tt_looking_glass yes that's what happens with me as well, it's tough but we keep pushing through 🙂💜
Wow. Sooo much of what you said resonated with me. I struggled for 10 years with horrendous symptoms. I grew up in an emotional and physically abusive household so had the trauma from that but I also presented signs of hypermobility. The past trauma and hypermobility ticked the boxes for Fibro. Like you I dreamed of a big family but could physically and mentally only have one child. I genuinely felt that's all I could manage another child with being so ill. Major props to you for having 5 and making it through with the living hell that is fibro. I hope you are well and thriving today. Thanks for sharing your story.
Thank you so much for sharing your own journey with fibromyalgia and for connecting with my story. It sounds like you’ve faced significant challenges with both your health and your past experiences. Managing your symptoms and the impacts of your early environment shows great strength. Balancing the dreams of a big family with the realities of chronic illness involves tough decisions, and making the best choice for you and your family requires deep self-understanding. Kudos to you for doing what is best for everyone involved. I’m sending you all my best wishes for your continued well-being and health. Your support means a lot, and I hope you also find moments of joy and peace amidst the challenges. Take care, and thank you again for your kind words and for reaching out.
Iam so depressed my 2 little daughtr iam nat care him because very pain
Hello! This is a helpful video. Thank you.
I was born in the mid 1900s. I have had fibromyalgia with major depression since about 1992. I was diagnosed in about 2017 and I am learning more. Knowledge is very helpful to me. Fibromyalgia in me has lead to many other chronic illnesses, RLS, FC, I am also ADHD, autistic and I am a survivor of trauma too! The trauma caused the fibromyalgia.
Listening to people who know what it is like because they are fellow sufferers is comforting for me here. Thank you.
Bess in UK
Really glad to hear you found the video useful! It sounds like you've been navigating quite the health journey. Getting diagnosed a bit later on must have been a mix of relief and a new challenge, but it's awesome you're diving into learning more. Knowledge can be such a game-changer in understanding and managing everything.
Hearing from others who really get what it's like can make all the difference. It's like finding your tribe, a group of people who nod along because they've been there too. I'm so glad you're finding comfort in this community.
Thanks for dropping a line and sharing a bit of your journey.
Thankyou for sharing your story in such detail! I can relate to so much of this myself, although I have lupus and CFS. But also migraine and DDD. My mother has fibromyalgia though and her experience before diagnosis was very similar to yours! I 100% relate to what you said about being a high-achiever and always pushing yourself before your diagnosis (as you know from my channel's content lol). I love that you're sharing such valuable info with others! We need more voices like yours in this space. Keep creating! You're changing lives!
Thank you and thank you for watching. I am definitely learning to live a slower pace life and I’m loving it. There is such pride in our society for being busy and being stressed. No wonder chronic illness is on the rise.
@@tt_looking_glass Yes! I always say that because I truly believe hustle culture is causing a lot of this. We can not operate in survival mode and not get proper sleep and regular rest without consequence.
Rccx gene theory so true
Hey, my mom had fibro as well, all my life. And then me... after 3 babies, whammy ME\CFS and we agree the conditions are different t but have overlap so we support each other
@@user-cb8sg9py7r have your symptoms changed threw time are you both hypermobile that's a big link to do ADHD meds help you either
Thank you so much for sharing your story. It’s been really hard because I got sick with a viral infection, and then out nowhere start having weird symptoms extremely fatigue, chronic pain, I couldn’t even moved, lightheaded it’s been awful. Run like a 10000 different test, everything came negative. When to different doctors everyone keep saying that they were nothing wrong with me,it has been very lonely journey. But finally I found a rheumatologist doctor and we was able to diagnose and figure it out what I have. I was so reliefs to figure it out to finally know what’s going on with me, but at the same time was scary because now I have to adapt to my conditions, change my life the perspective of my body, knowing my boundaries and patience with my body. Like I said it’s been very hard because I use to be super active, strong and know it’s very different …thank you once again for sharing your story it giving me hope knowing that 🙏🏻🙏🏻 💜💜
You are welcome. I hear you friend. It is a hard journey! But it is possible to see yourself in new light. This illness has definitely changed how I do things but I still live my life. I’m glad my video brought comfort and hope to you. This is exactly my goal for this channel. Don’t lose hope that someday we may find a better way to manage this condition. Meanwhile we live the best life we can with the symptoms we are experiencing at the time. Take advantage of good days and be patient on the bad days. Savour the little things, the important moments. Celebrate every little win. All the best in your healing journey and I hope you stick around for future videos.
I love your openness and authenticity. Thanks for sharing 💜
I usually don't comment on videos, but your video was so inspiring...I have fibro and I have other mental and physical diagnosis as well...And it's very possible I have a couple more diagnosis that have been missed...I almost don't want to find out cuz it's just more to deal with...I'm not trying to sound like I am feeling sorry for myself because I figure it could always be worse...But as you know it's hard...Real hard...You are very strong...Keep doing what you're doing...You are helping a lot of people...God bless you...
Hearing that my video inspired you, especially as you face fibromyalgia and other challenges, truly means a lot. Feeling hesitant about discovering more diagnoses is understandable; it's tough enough handling what's already on your plate. Your strength is clear in how you're managing, and it doesn't sound like self-pity at all, it's resilience. You're not alone in this struggle, and your words encourage me just as much. Keep holding on to that strength, and thank you for your support. You're helping others too, just by sharing your story. God bless! 🌟
Hello
Nice to meet you
New Subscriber here from Amman Jordan 🇯🇴
My friend suffers from this condition so thanks for the information
It makes me more compassionate toward her and others with Fibromyalgia
Nice to meet you Elizabeth, I love when people introduce themselves. Welcome to my channel and this community. (A little side note, I have planning a trip to Amman, it looks so beautiful and such lovely people). It is so nice of you to educate yourself about your friend’s condition. What an amazing friend you are. I don’t know if you have seen my other video on Fibromyalgia symptoms. “Fibromyalgia symptoms. What you need to know.” It’s a very informative video too.
Whenever you decide to visit Amman,please let me know
I own a Boutique Hotel here
It’s on the Internet
The Conroy Boutique Hotel
I’m also on Facebook
Take care
Amazing! I will definitely get in touch.
I was finally diagnosed after the third child. My symptoms got very bad with motherhood and with the sleepless nights. I became unable to walk or use my hands. I did not stop until I found a final answer. I was completely handicaped and unable to sleep. It has been two years of diagnose and I finally accept it. All tender points are tender and all symptoms are there, plus additional horrible pain in unpredictable places at unpredictable times. What a life.
My symptoms all go worse with pregnancy and early motherhood but fortunately I never lost mobility. It must be so hard to balance motherhood and disability. How are you doing lately? How old is your kid/s?
I just watched your vlog about flare ups - I’m so glad somebody knows how I’m feeling - I haven’t been diagnosed yet - starting blood work on the 13th - this has been on going for years so I really hope they can rule out what it isn’t and I finally get a diagnosis ☺️thanks for the vlog hugs xx
There are so many people suffering from chronic illnesses and yet not many people talk about it. Even worse, not many people are believed. I hope your bloodwork brings you some answers. I want you to know that it’s absolutely possible to live an amazing life in spite of this awful illness. I had to adjust my life and there are times that are hard but I have an amazing family, I travel and I explore. I do the things I most love. As time passes I get less “bothered” by my flares and just take them without fighting it. Like when I get my period. I don’t like them, they influence how I feel and what I can do but I deal with them every single month. Hopefully for not too much longer 😂 lol!
@@tt_looking_glass you have certainly inspired and reassured me😘I’ve subscribed to your vlog and you know when you realise ‘hey I’m not imagining this’ !! and when the pain gets really bad the fact that I’m not being a ‘big baby’ and I’m actually going through a real illness - next step is hoping my Dr finally can acknowledge what is wrong - fingers crossed 🤞🏻and eyes if it helps 😂x
@@SuzieW30 fingers crossed🤞🏻. I have another Vlog coming up this Sunday.
Great story . I can totally relate. As a child I was always sick and my mom would alway say it’s a shame your always sick. 🤕
I wasn’t diagnosed until 27. I’m 30 now. I was at peace when I found out. Because I knew I wasn’t crazy .
I’m in pain non stop and never have any energy
I hear you. It's not easy living in pain 24/7 but the worse for me has always been not being understood and being criticized, specially by those I love. I hope you have good support. You don't want to miss my next video, it's titled "If you could see my illness". It's an artistic representation of what is like to live in pain. It will be up on Mar 18.
@@tt_looking_glass girl I totally understand you. I don’t have much of a support system. My state of pain makes others uncomfortable. It’s definitely hard dating too.
Keep strong. We can do this, as long as we keep supporting each other. This is not a journey to travel alone. We need our tribe.
I always had hay fever when I was young but developed wide spread pain when I was 15 and I felt so tired . My dad was bad tempered and my mum had a nervous breakdown and became mentally ill . I am now 59 and still have it .
I’m sorry to hear you had it so rough. I often wonder how much physical and mental trauma contributes to onset of symptoms. I believe I will still have Fibromyalgia when I’m your age (I’m 48 now) I just hope that will have a way to manage it a little bit better. Take care of yourself and thanks for watching. I hope you will enjoy my other videos as well.
Do you happen to have hypomobility or heds had CFS before fybromyalgia b26 years though I now diagnosed heds and comorbid asperger's at 43
Amazing journey! You are a champ. Many people give up. Hope many can learn from your inspiring videos.
Thanks Bea! It is journey of growth and acceptance.
Your story and mine…wow our stories are weirdly similar and some opposite stuff too! I’m also weird! Sick from birth. Took years to put things together. Was told when I was little that I had hypoglycemia and asthma. Then when I was 35ish Fibromyalgia then at 50 Postural Orthostatic Tachycardia Syndrome. Im weird! I found you through a short! You cracked me up so I subscribed. 🦋💋💕
I’m so glad my shorts are reaching the right people. Thank you for subscribing and for sharing a little bit of your story. I’m glad you are enjoying the videos. ❤️
OCD from 3 then a fall 17 broken tailbone caused pelvic pain the CFS or neurosthenia in 1998 then pots 2006 to 2008 2017 fybromyalgia so all same illness now heds diagnosis àspergers
Thanks for sharing your story! I feel you!
Thanks for watching and thanks for listening! ♥️
You are not weird. You are unique. ❤
Thank you. ❤️
I’m 27 and just got diagnosed. Had symptoms for at least 6 years but progressively become worse
I’m so sorry you’ve been dealing with this for so long, but I’m glad you finally got a diagnosis. It is such a long road, especially when things get progressively worse before you even know what’s going on. You’re not alone in this, and it’s a big step forward just having a name for it. I hope you can find some relief and ways to manage it better now that you have some answers. Take it one day at a time, and know we’re all here with you on this journey. 💜
You are not weird. Anyway I was just diagnosed two weeks ago…and for the past 4 days I have been so sick..I was searching for some kind of answers , and found you. I don’t want to watch the newest one….I need your input…so maybe I won’t feel like I am Crazy .
.
Welcome to the channel and to the community. Thank you for stopping by. First, I'm so sorry you have been diagnosed with this terrible condition. Second, don't despair. Many of us live with this. It's hard, it changes your life and you will find out who your friends really are. However, you can live a fulfilling life. It requires patience, support and determination but you can see it through my journey in my channel. The highs and the lows and how I still manage to have fun in my life. Feel free to explore my other videos and don't be shy to comment. I answer every single comment. ❤️
I don’t have Fibromyalgia but definitely suffer abdominal upsets very easily after eating out and being in the cold
It’s not the diagnosis name that matters, is the symptoms you feel and how they impact your life that matters.
My 51 years with fibromyalgia has been progressively worse. My never ending pain, inability to sleep and anxiety have made me a semi-invalid. I have suffered without any pain relief here 🇺🇸 due to the medical professionals fear of losing their livelihoods from Govt. I have been struggling with suicidal thoughts and doing my best to hang on as my husband is older and with Parkinson’s. I too am a type A perfectionist, very active, wanted too, and had 6 wonderful kids, we moved 23 times and are done. I experienced trauma and still deal with PTSD. All my babies were c-sections.
I'm so sorry to hear about the immense challenges you're facing with fibromyalgia and the additional struggles in your life. Living with chronic pain, sleep disturbances, anxiety, and managing the care for your husband with Parkinson's - all of this is incredibly demanding, both physically and emotionally. The fact that you've also been dealing with this without adequate pain relief adds another layer of difficulty.
It's concerning to hear that you're experiencing suicidal thoughts. Please know that your feelings are valid, but it's also important to seek support during these times. Whether it's talking to a mental health professional, reaching out to a support group, or confiding in a trusted friend or family member, you don't have to go through this alone. Your mental and emotional health are just as important as your physical health.
Your strength and resilience through all of this - raising six children, moving multiple times, dealing with PTSD and trauma - are truly remarkable. Remember to give yourself credit for the immense challenges you've overcome and continue to face. You are a strong individual, and your perseverance is inspiring.
Please take care of yourself and reach out for the support you need. You deserve compassion, understanding, and appropriate care. I'm sending you thoughts of strength and hope, and I'm here to offer support and a listening ear. 🌟💖🙏
Mine is genetic, then I got tonsillitis and strep throat at same time. Got bad abscess, then had to get tonsils out. Also had problems with with employee in church as well. After I recovered I didn’t have my regular energy. Before would go on walks go all day. Also was going througH MENOPAUSE. MY ENTIRE life changed.
Many people report their illness starting after a viral infection or accident. I believe there is a genetic component that gets triggered by some trauma. I’m perimenopausal, and ohhh boy! Has that created challenges for all my chronic illnesses. It’s like my body doesn’t know what is going on!
so well done for talking .i have both m.e .and fibromyalgia list goes on, ware else can i follow you,mark
Thanks so much for your kind words!
You can follow me on Instagram @tt_looking_glass as well as on Facebook for more updates and support. I try to keep the community connected and supportive across all platforms. Hang in there, and feel free to reach out anytime!
Take care, Mark 💖
I have fibromyalgia n chronic fatigue syndrome, was diagnosed 20 years ago l now am 74 , every time l have a flare , l am not in touch with anyone or anything! it’s Terrible everything just mounts up as far as my house work , l stop going to Doctor became l was so sick l couldn’t even get dressed this stuff lasted on me several months sometimes, on top of it you have new symptoms , like pain in an area where you didn’t hurt before , another thing that’s happening to your body is your autoimmune disease is attaching itself , but the only thing that keeps yourselves from giving up is God l am a firm believer in Jesus Christ and the way he created me to be , strong with a willingness and stubbornness to keep going , it’s right that or die ,and l am also not afraid of death for l know l will have a spot in heaven thank yo Jesus Amen 🙏
I’m so sorry you go through all of that. It is not easy at all to go through a flare. I do let go of taking care of myself when I’m in a flare too. The first thing it happens is I have no energy to cook and so I eat terribly. Which in turn does not make me feel any better. Faith has definitely kept me going many times. At the end of the end it’s all we have. Keep going. It’s what He want us to do. It’s why we are here.
Hi love your logo has a spelling error fyi! Ty so much for the information, makes so much sense now
Thank you so much for pointing that out. No one has ever noticed or said anything. Yay for dyslexia. I’ll actually make a video about that and will use this as an example. I will fix the intro and will make it is correct in my future videos. But yeah, it’s not easy when your brain plays trick on you. But I’m glad you enjoyed the video regardless.
@@tt_looking_glass 110%!!! I have it too! And looking into getting diagnosed with fibro...loved the video hun ty so much! 😘 I also run a business so I was hesitant, but people are polite and don't say anything you'll never know! We write it, so our brain sees it right haha 😄 xoxo ❤️
@@mromak3086 yeah. Totally. I really appreciate you pointing it out. I’m the kind of person who takes mistakes as opportunities. It just gave me a video idea too. I’m not ashamed of my flaws, when people point out my mistakes in a respectful way it allows me to develop coping mechanism. I will make sure more than one person proof read before posting the next one. I want this channel to be real and raw and this is what just happens. When I make a video about it I hope it will make other people not feel so alone or ashamed of the things that we struggle on a daily basis. This channel is about how I handle life with all of my imperfections.
@@tt_looking_glass yesssss! Ditto! I know that I would much rather know haha xoxo subscribed and cannot wait for the next vid!
Thank Goodness I'm Not Allergic To Pets!
I am, but my pets keep me going🐶🐱
So I just found this video and a bunch of others. I think I have fibromyalgia, i have all the symptom, all of them and some more. My blood test are perfect like I should run a marathon and hit the gym daily. My only "bad" exam is an ex ray of my spine that is curving due to the contraction of my muscle on my neck, in fact that is the part that hurt the most. Afte years a went again to my family doctor after I stumble upon an article on fibromyalgia. He said it's not a real, that I cannot be because it's not a diagnosis it's not a real illness. He said is because of buxism(grinding teeth) of course it's not I even went to the dentist which confirmed it's not. I felt deflated I don't really know where I should go to be heard. I'm tired to neglect all this pain and go on as nothing is wrong with me, but at the same time I doubt everything after years of being told I'm healthy and I'm just stressed. I really don't know what to do
Was wondering did you have aches and pains and hurt everywhere painfull getting touched burning skin symptoms very sore arms feet and legs all the time
Yes, I already a lot of back pain as well as generalized pain, trouble sleeping, headaches and fatigue since a very young age.
@@tt_looking_glass yes this is what I’ve had plus most of the stuff you say but I’ve never really had allergies but things like psoriasis and even skin changes likes redness or purple to hands and feet my rheumatologist hasnt actually diagnosed me been into my sixth year of this
I think a lot of my skin issues are related to my Mast Cell Activation Syndrome. When you have multiple chronic illnesses it’s hard to know what is what. I’m so sorry you have been suffering for so long without any answers. Unfortunately that seems to be the reality of a lot of people.
It's mee. All the symptoms.😢
Oh, I feel you! It can be so overwhelming. Just know you’re not alone in this, and I’m sending you lots of love and strength. ❤️
Thanks, for you too.❤
Have you thought of stop eating plant seed oils. Not easy cause it is in most processed foods these days. Im doing this right now an feel better slowly each week that passes.
I have not thought of it. I usually try to avoid processed foods and try to eat a plant based diet but sometimes I do a good job and other times not so much. So know know what is the reasoning behind? I will look into it. Thanks for the suggestion.
I was allergic to oriducts perfumes etc at 3 long before seasonal allergies nall year round found out its oart of sensory processing disorder and autism i was also travel sick from 2 to
Thanks for sharing your story! It’s interesting to hear about your early struggles with allergies and sensory issues, and how they connect to sensory processing disorder and autism.
@@tt_looking_glass seams to be the trigger nfor later CFS fybromyalgia what I can find out used to hurt to have my hair cut at 5
I have fibromyalgia and iam a male it started when is was 13 now I am 15 at first my parents said you are making things up don't lie but now they understand me
Wow, starting with fibromyalgia so young must be incredibly tough. I’m sorry you had to deal with people not believing you, especially your parents at first, that’s got to feel so frustrating. I’m really glad to hear that they understand you now though. It’s such a huge relief when the people closest to us finally get what we’re going through.
Fibro is hard enough without having to prove it to others, right? I hope you’re finding some support that helps you feel understood beyond your family too. You’re really strong for getting through this, especially at such a young age. Keep speaking up for yourself, your experience is real and important!
@@tt_looking_glass yeah even my doctor's say you just imagine pain they say these are your thoughts only iam really depressed
I've has so much trauma I to have fibromyalgia do u have skin issues like prickling and itchy ??I also have awful anxiety x
Yes I do have many skin issues but have recently also diagnosed with Mast Cells Activation Syndrome which attack mostly skin and your gut. So it may be related.
@@tt_looking_glass thank u for replying I'm so ill with it had urine infection and its made me soooo ill been in a flare for 5 weeks now x
Hang in there friend. It’s hard to believe you will ever feel better again, but I promise you will. This illness does make us practice patience for sure. I am looking at doing a video on tips to help ease the pain during a flare as well a video on how to keep yourself busy and distracted during a flare. Stay tuned.
Vitamin D plays a huge role in the gut , for overall health , food immune system and healthy skin...@@tt_looking_glass
Would you mind sharing what meds you take to reduce flares?
Of course. I take Low Dose Naltrexone 4.5mg once a day and a muscle relaxant called Tizanidine 4mg before bed time. I have also started doing Ketamine/Lidocaine infusions once every two month and it’s making a big difference. Then I take oxycodone for really bad flare days.
@@tt_looking_glass Thank you so much for sharing, very helpful! My doctor wants me to try Cymbalta, but seems like a scary drug.
@@maryetienne2821 some people see benefits from it but from my research it may work at the beginning but after a while it stops working and there are several side effects including weight gain. It is also a drug that you can’t just stop taking. You have to wean off or you can experience withdrawals. There aren’t a lot of options for fibromyalgia but LDN works really well for me with no side effects at all. I recently have also learned that it can be used to treat MCAS which is a condition I have been diagnosed recently so I felt I was really on the right track taking it.
I don't know what kind of fibromyalgia people have, but in my case I don't give myself permission to stay in bed, or at home, I've no choice... And I get worse every year pass, last year I still could go on my bike, this year is difficult even to get upstairs... All my body is collapsing, I'm constantly in dizziness, nausea and exhausted... I don't sleep, I don't eat much. Or I don't have fibromyalgia or certain people don't have, or is very different for each one of us. When you say 3 children, i didn't belive it, the pain and all of the other symptoms must been horrible 😢 and you went through again, twice?!! I can't even have sex or any exercise, is not just the pain in the moment is the pain carry and gets worse, till gets better, plus every day I noticed I'm more tiered, I do less, and I think, I do it tomorrow... that are the times I allow myself coz I've no choice..
Please share what medicine you took, or anything else that helps, specially the fatigue 😢
❤
All my symptoms also started after a car accident and very stressful events, head impact, scan show nothing, first symptoms, difficulty concentration, ringing ears, shaking hands, 1 month later the weird pains, I vomited, fainted, more scan and nothing... In the last 7 years I managed, this last year is going down, big time. Sorry and thank you ❤
I'm really sorry to hear about your struggles. Fibromyalgia does indeed affect everyone differently, and your description highlights the immense challenges you're facing.
It's not uncommon for symptoms to intensify after a stressful event or trauma, such as a car accident.
Thank you for sharing your story, and don't hesitate to reach out if you need someone to talk to. Wishing you strength and moments of relief amidst these challenges. ❤️
What medication worked best for you
A medication called low-dose naltrexone. It doesn't cure it but makes it more manageable.
Hi my friend...Trigger points are no longer necessary for a diagnosis of Fibromyalgia. People like me, may not have them.
I'm glad to hear that trigger points are no longer a strict requirement for diagnosis. Many people, like you, may not have them, but that doesn't diminish the validity of their Fibromyalgia experience.
It's essential to acknowledge that Fibromyalgia is a complex condition with a range of symptoms and manifestations, and diagnosis criteria have to adapt to reflect this complexity. Thank you for sharing your insight and helping to raise awareness about the diversity of experiences within the Fibromyalgia community. 🌟💪
Found out i wa diagnosed neurosthenia 1998
Neuroasthenia is an older term that is n now commonly described as chronic fatigue syndrome or sometimes even Fibromyalgia.
@@tt_looking_glass yeah I dint no until I was referred last year they diGnosed me with that in 98
@@tt_looking_glassyes that true some symptoms have changed over the decades some are the same
I can't bend my knees at this moment 😅😢 just cleaning the tops, ta bricando
Eu quero aprender com vç, porque eu não estou conseguindo não, aqui in London eles gozam, e ainda dizem que eu não posso ter outra doença porque tenho fibromyalgia, imagina, eu estou neste momento trocando de médico, mas eu acho que apenas o endereço vai mudar 😅
Sinto muito ouvir que você está passando por isso. É incrivelmente frustrante quando os médicos não levam a sério os sintomas adicionais, especialmente quando você já tem fibromialgia. A mudança de médico pode trazer novas esperanças, e espero sinceramente que você encontre um profissional que compreenda sua situação e ofereça o apoio necessário.
Quanto ao desafio de viver com dor e lidar com a incompreensão dos outros, eu entendo como isso é difícil, especialmente em um ambiente onde as pessoas não compreendem completamente a fibromialgia e suas ramificações. A busca por um médico que ouça e entenda seus sintomas é um passo importante, e eu espero que você encontre o suporte necessário.
Se há algo específico em que posso ajudar ou se você gostaria de compartilhar mais sobre sua experiência, por favor, sinta-se à vontade para compartilhar. Estou aqui para ajudar no que for possível. Desejo a você força e perseverança nessa jornada. 😊
Fibromyalgia is difficult disease, but diagnosis itself is difficult----- no lab test makes diagnosis. Treatment is not easy either. Lot of psycho- somatic issues are there. Disease is life-long. Treatment is life-long----- and treatment is not curative. Treatment is symptomatic.
Yes. You are very right.
Have you found anything that has worked
Im living in Holland have fibromilagia had a car accident and a whiplash🤣🤣
Hello from Canada. Funny (but not funny) story, I lived in Holland for 6 years between 1990 and 1996 and also had a car accident with a pretty bad whiplash. That is when my fibromyalgia started. I didn’t get diagnosed until 2006 here in Canada.
@@tt_looking_glass funny Holland is tha bom😛you like Holland more then Canada or Canada more living do you olso have cronic tiredness
@@robbertdekok8987 yes, I also have chronic fatigue, chronic migraines (check my latest video for that one), POTS (postural orthostatic tachycardia syndrome) IBS (irritable bowel syndrome) and MCAS (mass cell activation syndrome). There are many things I love about Holland and I absolutely love going back on holidays but my life was very turbulent and traumatic while I lived there and Canada is an easier country to raise a large family (I have 5 kids) so for those reasons I prefer Canada to live.