I can't hardly remember what not having any kind of pain in my body actually felt like. I know there was life before fibromyalgia and chronic fatigue but it seems like a far way dream.
I totally agree. It's been six years since my diagnosis, and probably 7, almost 8 since my symptoms started coming on, but it's hard to remember how I felt before then. Thank you for watching!
Can relate too this comment a lot. Have had fibromyalgia since late 20’s and iam 60 now. In 2013 I was in accident and was hit by car in cross walk and have mild tramatic brain injury, bad arthritis, degenerative disk disease, spinal headaches and migraines that were made worse by accident in addition too worse fibromyalgia symptoms. Iam now in pain management and have been since 2013 . Never thought I would ever need something so strong too control my pain.
Another thing that's difficult to deal with is its an "invisible illness." 😕 People don't believe you're suffering because you appear "normal." Like we don't have to explain anything to them.
The invisibility and appearance of "normal" is so difficult. It's so hard to get people to understand our limitations when they don't believe we're sick or that we're as sick as we say we are.
I'm so sick (no pun intended) of hearing "Well, ... You look o.k." .. I could slap the next person who said it. I often wished I'd turn purple so people'd believe me ! ... 💟...🤢
The pain is throughout my whole body along with my skin is on fire. I’ve been diagnosed 1997. I didn’t know that this even existed. My family and friends thought that I was faking before the diagnosis and even after the diagnosis they thought that I was faking. So I learned not to express the pain during the flare ups. It’s so funny when they are not feeling well that they except you to care for them but they cannot reciprocate the care when it’s you who is in need.
It's so hard when close friends and family don't believe in the diagnosis. It just adds a whole other level of emotional pain to not be accepted and supported. Thank you for watching Roselena! :)
Awe yes! The ol’ hypochondriac gal! That is just not fun at all! I’ve been there until they found my broken spine and ruptured discs then they were silent, still have fibromyalgia and it’s worse due to nerve diseases, so stay strong and know YOU are not alone!!♥️ sometimes having a chronic illness scares the hell out of loved ones so they belittle or act angry etc. that’s my own history. We are here as a community and I’m glad they don’t have this cross to bear, meaning fibro, I doubt they could handle it
I'm in a bad flare-up right now and this is EXACTLY how I feel! Thank you for saying this because I was having a hard time finding these symptoms as Fibro symptoms! ❤
When I started researching fibro around the time of my diagnosis, it shocked me seeing all the little bizarre things that I was finding people talking about. I also thought those things were "just me". We're not alone. Thanks for watching!
Not to be a dick.. but there’s no really objective medical exam that can diagnose you, it’s all self reported symptoms. Just like mental health disorders. It’s why a lot of people get denied for disability benefits or doctors won’t approve a placard. There has been people who say they have fibromyalgia but really don’t. They may just have anxiety or depression. Which let’s be honest, can cause you to have pain when you don’t. Again, it goes back to the first problem. Not saying all that is right but they are legitimate issues.
Yes I’m 52 and been through years of working and I just can’t anymore. My last job was a 4 hour shift and my body was telling me No more.. I started to get numbness down my face and Auras! I wanted to work so bad bc I know the pay cut I was going to get without.
Does anyone find that after a certain amount of time trying to lay down to try & sleep that the pain gathers in certain areas so intensely that it eventually becomes so excruciating that you need to get up?? Thank you SO much for the video btw!!
I was like this lastnight, all the pain collected in my pelvis and legs and I ended up awake until 4. Tried some ibuprofen that took the edge off a bit (I haven't been prescribed any pain meds yet) but from the waist down I felt like I had the flu
Yes this happens to me. I can’t lay my head on the pillow because the pain is so big. This is why I get little sleep because I feel better sitting up (no pillow touching my head snd neck).
The burning and joint pain, stiffness and stabbing pain, migraines, ibs and back pain Is terrible. Everything hurts sitting, laying or standing, noise or stress makes it worse. None stop pain and 10 times more in a flare. The whole body feels like it’s been sprained. People have different levels. My normal level of pain everyday is always at 5-6 and gets worse as soon as I move. I have Severe ME a lot more symptom, paralysis, FND, Nausea. I am mostly Bedridden and use a power chair. Have to be driven to appointment, The brain fog is bad my vision also is affected. Thanks for this video it explain a lot more then most. Giving some idea what we are experiencing, Some worse then others. I pray the Lord will keep you strong to continue your work.
I don't know that I get pain but my skin does get more sensitive. Things that don't usually feel scratchy will feel uncomfortable on some days. It's not fun.
I to get where wearing a bra is so difficult. Yes some fabrics an be painful. So look for fabrics that are soft and silky and feels light. I stay away from heavy fabrics lol Iike leathers and heavier wools
I have been in a bad flare up since January 2021 and it's now June 2021. I now take cbd full spectrum to help deal with it. As for my skin issues, if you touch me it literally feels like someone rubbing sandpaper over it. I wear my clothing 1 size larger because of the pain. I was diagnosed in 1998 after 2 years of trying to get answers. Don't ever let them tell you that it doesn't progress because it does. God bless each of you and I wish you luck in your mission that you have been given to deal with!! May you find your 1 small but happy place in your quest for relief!!😘😻😻
After my daughters wedding day, I woke up and couldn't walk. I had been so busy with the travel and plans, that I got too fatigued. I was on my feet from morning till night that day and woke up to so much pain. I finally was able to hang on the walls to get to the bathroom. This flare was the scariest thing!. I understand all your comments and hope you have many better days than bad ones.
Weddings are exhausting under the best of circumstances, but when you have a chronic illness, it's almost impossible. Thank you for watching and sharing your comment. :)
Is nice when you realize you're not alone in this situation. I'm currently in a flare and yes, is hard and sometimes your body doesn't want to move but your mind is going so fast. But still, it's just another flare and it won't last. I really enjoyed your video. Thanks for sharing.
Im crying right now that what you are tell8ng us & the comments .im not alone.everyone thought i was looking for attention .thank you for this .love ya sweetie
"it's not me against my body, it's my body and me against the Fibro" I will forever live by this saying now. Thank you for this video, I haven't found many people publicly talk so in detail about anything Fibro related and it's helped me see some of the symptoms I have are shared throughout. So really, thank you!
Thanks for watching Emily. I’m really glad my words resonated. Seeing the fibro as the enemy rather than my body as the enemy was a huge mental shift that made a massive difference to how I handled my fibromyalgia. Since making that shift it’s made it much easier to get through the bad days and be kind to myself.
I have been watching TH-cam for a few years and never thought to look up fibromyalgia. I was diagnosed with fibromyalgia (chronic fatigue) about 16 years ago. I am so glad to have found someone that speaks my language. I have been in a flare-up for the past week. Aching pain in shoulders, elbows, back, blurry vision and stomach pain like I've been coughing for hours. I feel comforted that someone else truly understands. Looking forward to supporting you in future
So glad you found me! :) Hope it helped you feel less alone. If you've looked at the other comments you'll see there are quite a lot of us, some of our symptoms are similar and some are different. I definitely understand. :)
Hi there, I hear you say blurry vision and wondered if it's the same as I've been having? All of a sudden my one eye, sometimes both, will see double vision, but this will be in one eye! I've had a migraine before but when I was very young and this caused blindness and blurry vision too, its similar to that. I've read it's a migraine online, cant remember the name. Anyway, blessings and hugs from another fibro friend. 😀
I feel your pain too, I just figure it out that I have this symptomp, (see me comment above) are you feel better now ? Or u get cure already ?? i feel so much uncomfortable and sooo cronic fatigue and many more until I tired to explain to people or friends what I trully have.
When I was diagnosed my doctor told me I could get SSD so I called an attorney and got the ball rolling. I went to the Social Security Drs and 6 months later got my first check. In the letter that SS sent me it said I had been granted SSD because I had a very severe case of Fibromyalgia. I cried. I felt like Finally! Someone believes me enough to even help me! Sleep is very important but I don’t lay around in bed. When I wake up I get up, there’s no going back to sleep. I pace myself and know my limits. When I push through the limits I pay for it the next day. Thank you for this video.
I have lupus, fibro, raynaud's, sjogren's, hypothyroidism and the list goes on. You did a really good job of describing what we go through and breaking down the day to day. It might not be extremely severe every day, but having pain every second of every minute of every day of every week of every YEAR, it rrreally gets to you. It's physically impossible to think correctly when you are in pain. Imagine that pain constantly!
That's a lot to deal with, I'm so sorry. I'm glad you felt I did a good job of describing what it's like day to day. It really is exhausting, even when it's not as severe, to deal with it every day, year after year.
I've been looking up videos like this lately. Mostly to feel not alone. I was struggling with pain for a long time without knowing what it was, and I was diagnosed with Fibro in the fall last year. Your description of the pain... is *exactly* my experience too. When I have a really, really good day it's like a 3. Your frustrations too about people thinking you're just being a whimp... same here omg. It's a vicious cycle for me too. Stress is a huge trigger for me, so I stress, flare up, then stress cause I flare up, and it just keeps going on. I am lucky enough to have a lot of support from my boyfriend of 5 years, who even goes with me to every doctor appointment. ♥
You are definitely not alone. I totally relate to your comment. Stress has been something I've been really focused on lately, it's a huge trigger for me as well. That's great that your boyfriend is so supportive, it makes such a difference to have someone in your corner. Thanks for watching!
Your comment “giving myself permission” is something I just started to allow myself after 17 years! Was a difficult attitude for me and allow myself to let go of household tasks. I am minimizing my belongings nis…slowly because I have 5 of my parents estates to clean, update, and sell. Also, changing my diet, chair yoga, and OMM therapy. “Shifting mindset” really helps! (I have other autoimmune diseases also along with PYSD. Sorting through it all with a flare up is challenging). Staying kind to myself is key now!
Giving myself permission to slow down and rest was a huge game changer for me. I'm so glad you're doing the same. Thanks for watching and sharing your experience Sandy! :)
Thank you for this video. I have been dealing with chronic pain for the past 10 years, but had several terrible encounters with the medical staff in my area, so for fear of not being believed, I didn't get it checked. Fast forward 5 years and I got way worse really rapidly and now, in 2023, I have made my health a priority. My doctor believes me. She's young and enthusiastic that we will find what's going on, but no matter what it is, I have flares and it gets BAD. So thank you! Because everything you just said, EVERYTHING, is how I feel right now. Thank you so much and good luck to you.
I'm so glad you found a doctor who believes you! That's truly the key. Whether it's fibromyalgia or something else, you need a doctor who listens and believes you when you explain your symptoms. Thanks for watching!
I've been avoiding looking too much into this because I was afraid of Dr. Googling myself into a diagnosis until my doctor and I talked about it (and we did) but lord, when you described the "itching so bad it's painful" I could've CRIED that shit is real and it makes me feel insane
Thank you for sharing! I was recently diagnosed with fibromyalgia and stumbled across your video while doing a bit of research on it since it's such an alien word for me. It's amazing how much I can relate to what you've said. I went to see one doctor after another and another and then another again for bodily joint pains I've been having that started out as mild and then progressed to severe fatigue for no apparent reason since about a year and a half ago. All blood work came out either normal or negative for autoimmune disorders. Regular painkillers stopped working so I stopped taking them altogether even though the pain gets so unbearable it woke me up in the middle of the night and I'd cry my eyes out back to sleep, unable to do anything else. Fibro fog is something I started experiencing in the recent months. This bothers me a lot since I have a PhD in engineering and yet I couldn't do simple maths calculations in my head without taking out the calculator. At first I thought it was a side effect of an antidepressant I've been taking for almost 4 years now, although it never really affected me this badly before. My doctor changed the medications because of that but the fogginess is still very much there. Sorry for the long comment on here but I'm looking forward to watching your other videos here!
Thank you for sharing your experience. I'm glad the video was helpful and relatable. I remember how it felt when I was first diagnosed and started researching it myself, it can be so daunting. I know what you mean about the frustration with the brain fog. I have a PhD in English and am a writer and some days it's just so hard to write. I know what I want to say but I can't get my brain to process fast enough for me to type.
Thank you. I feel more validated after listening to this. I was recently diagnosed, but have lived with the symptoms for a long time. It's good to have answers, and know that I'm not crazy or imagining these things!
Thanks for watching Nancy. You're definitely not alone. I'm glad you've received your official diagnosis, I know that was hugely validating for me. You are absolutely not crazy or imagining things.
My daughter was diagnosed 9 years ago, when she turned 30. Her symptoms however have been increasing both in number and severity over the past 9 years. New ones creep in, but the old ones seem to hang around and are getting worse. She has been in a major flare up for over 7 months now. It started in June, with a UTI, which actually was a UTI ( she can get all the symptoms of a UTI, including fever and blood in her urine, when apparently it's not an infection, but just her fibro) She was treated for it with antibiotics, and the infection cleared, but the symptoms didn't go away, they still haven't gone away. They fade a bit, but then return again. Obviously she was in pain, and as usual she put her daily increasing fatigue down to that, but within a month she was so bad she couldn't even get out of bed to the bathroom without collapsing. She had to be helped to be dressed, washed, do her hair etc, and yes, every bone, every joint, every muscle in her body hurt. It even hurt if you touched her. She has medication for this, but it knocks out her coordination, and her ability to concentrate completely, so she only uses it when absolutely necessary. It was necessary this time, especially since the cluster headaches had kicked in with a vengeance. She was pretty much bedridden until mid August, and then it looked like the flare might be starting to subside, although mouth and nose ulcers had kicked in, and the headaches were still lurking, she could actually move around a bit again. She had numbness alternating with the weird pins and needles, stabbing pains she gets in her hands and feet, but although still exhausted, she cut down a bit on the meds, and tried getting back to normal. Then she got pain in her chest, left side, front and back, with problems breathing. Because of the lockdown, she couldn't get to actually see a doctor, and she tested negative for Covid, so it was presumed she had costochondritis, though there was no obvious reason for this, but again probably just fibro related. She was told to take the painkillers again, and basically just get on with it, just like with the UTIs. For a month she couldn't breathe when she lay down to sleep, she needed to sleep sitting up, and leaning forward, to ease the pain and the pressure on her chest. It wasn't until the end of September that it started to settle a little, but by then she was back to being totally fatigued as well. The ulcers were still there, coming and going in batches, but always present, the UTIs, which are not UTIs, were still hanging around, sometimes better, sometimes worse, and the chest pains would kick in every time she tried to do anything, even just making a cup of tea......but it's just a fibroflare...... Fevers came and went, her hands blistered up for no apparent reason, She had to start using eyedrops because her eyes were so dry from the fibro, and a bout of sudden, random attacks of extreme vertigo now made it impossible for her to leave the house anyway, without having someone with her, not that she could walk very far without having to stop and rest.....not so easy in the Winter. Christmas was a struggle, she had a short bout of Trigeminal Neuralgia over the holiday period. Fortunately she doesn't get these so often any more, once the Cluster Headaches started, they seemed to phase out a bit, but it still sometimes kicks in during a bad bout. She gets bouts of TMJ as well, but that, like the IBS and the Brain fog and the random fainting fits, is I'm afraid just par for the course. Things, touch wood, have settled a little now we are into the New Year. She's still extremely fatigued, and her joints are visibly very painful and stiff, but she's back to trying to do stuff indoors, to get back to some form of normality. She's still getting varying degrees of fibro UTI, chest pain, ulcers, so it's still very up and down on a daily basis, but she'll settle for all over pain, frequent naps and lots of peace and quiet as a baseline. The one thing she'll never settle for is the Brain fog. I think she'd do anything to be rid of that. But that's fibro. I empathise with anyone and everyone who has it. It is a dreadful condition.
Thank you for sharing you and your daughter's experience with this condition. It's amazing how it can affect some people so severely and others have more mild cases. Gentle hugs to you both and I hope she gets some relief soon.
I have great sympathy for you and your daughter. I know that doesn’t make either of you feel any better but it does let you know I understand and care. My heart goes out to you both. And, yes, I understand. I too have this horrible disease.
I try to explain to people what fibromyalgia is like and what is like having and it has so many different symptoms. The only way I've been able to explain it that they understand it, is what I called the spoon theory, what the spoon therapy is each morning you're given five spoons or 10 spoons however many spoons you want to give and every time you do something that takes away a spoon and when you are out of spoons you can't do anymore you are done you you physically mentally spiritually emotionally cannot do one more thing and to make them understand that your spoons ran out and that's it for me they have finally been able to understand.
Perfect description of the pain scale and how it is tolerable or intolerable depending on how many days you are going through it. Thank you for your articulation. 20+ years myself and still haven't perfected how I talk with family and friends about fibro.
Thank you for watching Sonia. I'm glad I was able to accurately describe the pain scale, I agree that it's so hard to get friends and family to understand.
I’m crying right now because I knew that other people dealt with this, but I never had someone explain what I’m going through exactly as they are going through it. Thank you SO much for this video!
Oh my goodness! The sudden, severe itch that's so bad it hurts on the bottom of my feet! I'm so relieved to hear something else has that. I never thought of it as fibro related since I don't have that much tenderness to touch or skin pain, but now I'll be more mindful of my itching as a sign of a flare possibly coming on. The more things I can keep an eye on as a sign to really take care of myself, the better. Thanks!
Yeah, I saw someone in an article talking about the severe itch on the bottom of the foot and it blew my mind that it was an actual thing! Thanks for watching.
While we are at rest the body is in pain and fighting the pain. A true sleep with deep rest, like sleep is supposed to be, does not happen , often, if at all.
I admire you for continuing to work. I had a good job but the flares were so bad, I ended up quitting and the job stress only magnified it. On top of all this, I have spinal conditions from neck to feet so it makes everything so much more “fun”. The only problem is I hate having to communicate my problems. With my husband, I’ve already told him that when I’m quiet, I’m silently suffering and trying to cope. When I’m in the bedroom with the door closed, my senses and body are overwhelming me and I just need to be alone. I’ve tried a lot. Heating pads/cooling pads(which can be a double edged sword because my skin might be sensitive), Tylenol (rarely works), stretching (which can burn so badly sometimes), Doterra Deep Blue Rub (again... smell overload), turmeric (may not work sometimes), massagers (can be painful and cause more pain after)... The list is never-ending.
It's so hard, I'm so sorry you struggle with it so much. I totally agree that a huge part of the problem is trying to communicate what you're dealing with to other people, it's so hard to explain. But suffering in silence makes it even worse. Thanks for watching and sharing your experiences.
I feel your pain. You have it down to exactly what I feel constantly everyday for 10+ yrs. Thank you for making me feel that I'm not alone. I can't work at all. And the guilt is horrible of not being productive.
You are definitely not alone. And I know it's hard, but you shouldn't feel guilty. It's not your fault, you have a medical condition that causes limitations. We're all just doing our best. Soft hugs! Thank you for watching. ❤️
Thimna, it's different for everyone. I was diagnosed almost 6 years ago. In some ways my pain is worse and the flares can be more intense, but I've also gotten better at recognizing the signs a flare is coming and make adjustments so it's rare for me to have a flare that totally wipes me out. Stress is a huge trigger for me as well and I've had to actively work, this past year especially, to make significant life changes to help manage my stress and prioritize rest, exercise, proper meals, and drinking enough water. Those changes have made a huge difference and I'm starting to feel better now than I have in years. It might only be temporary but I'm enjoying it while it lasts.
I really enjoyed this Andrea, and sent it to my daughter who also has fibromyalgia. I think you gave a very detailed and informative explanation of having a flareup. You have a good understanding of it, especially since you’ve only had your diagnosis such a short time. I’m happy to see more of your posts on fibromyalgia. Blessings🦋Victoria
Thank you. Just coming out of a 6 week flare. I know I’m not crazy but hearing it from someone else exactly what I am going through is actually very soothing
The more I hear other people's stories the more I feel validated that I'm going through an actual thing. I've been in almost constant pain in my joints for almost 10 years and I'm only 22. So many people think I can't hurt because I'm so young, but there's never a moment of peace. Lately, I've been so frustrated and finally gone to see a doctor. Everything hurts, nerves, muscles, joints. I thought it was just stress but it constantly happens. My brain fog has been so bad, I can't focus on anything for very long and even typing gets the better of me sometimes. I'm so frustrated constantly because of the pain and not knowing why, then my anxiety and depression crop up. I can't tell you how validating hearing your experience has been for me. I find myself completely relating to almost all of what your symptoms are. So far I haven't been diagnosed, only told that I don't have rheumatoid arthritis, wish me luck in getting another appointment scheduled soon so I can look into this medically. Thank you so much for sharing your story.
Thank you for sharing your story Zak. The diagnosis process can be long and exhausting, good luck as you move forward. Just know that you are not alone and all your feelings and pain is real and valid.
@@AndreaJSeverson thank you! I have an appointment with a primary care physician on Wednesday to get his opinion and diagnosis for potential fibromyalgia, so far I've been tested extensively for rheumatoid arthritis and thank god all of thay came back negative. I wouldn't have scheduled an appointment without hearing your story, so thank you! I hope you've been doing well!
@@Arraby42 thank you for that! I got diagnosed with fibro in October and it's been a bit of a ride trying to navigate it, I'm currently just taking Tylenol and trying to get through it along with my antidepressants for the depression and anxiety I have along with it. I hope you're doing well!
Dear Andrea J. Severson, Thank you. It is rare to find a person who has fibromyalgia actually describing what it feels like. I feel all these things you describe here. I have fibromyalgia too. Best wishes from Bess in UK 😊
Thank you for sharing this video. I’m in a major flare up right now and the fatigue is to the EXTREME and pain is brutal. I hear ya with the fibro fog too. It’s so strange when it occurs. I hope to get better so I can be employed again. It’s a daily struggle.
Ugh, the fibro fog is the one symptom I can't seem to adjust to. I can power through the pain and fatigue but the fog is such a disconcerting feeling. Thanks for watching! Hope your flare passes soon.
I’m now on SSD I’m now 59 and a woman and it’s been a real rough ride especially because people can’t see it mental body brain internal and stress kills ya and touch can just bring tears 😭 I hope someday they look at helping those of us that suffer
I am back again with another fibro flare. It started last week and hasn’t really let up. My flares can last over a month. My legs get the worse of it. I had actually forgotten I had left a comment on here 7 months ago. I managed a walk today but even that was a struggle for me. And my legs have been so stiff today too. And you are right it’s not a case of taking a tablet and everything is fine. I have been dealing with this for over 14 years. And not enough sleep makes my fibromyalgia worse. Worse case scenario the pain brings on a panic attack for me. I have been back and forth to different doctors about this so many times with no luck.
I've been learning how important sleep is. Recognizing that I need more sleep than the average person and letting myself have it is so important. Hope your current flare passes soon.
Good wishes to you. I've had it for 6 years. It's the never ending and relentlessness of it that crushes me. It absolutely grinds you down. Love to all those fighting this dreadful battle.
Sleep helps me with my neuropathy. My mom swears I have fibro, but my neuro doesn't diagnose fibro. I have been diagnosed with small fiber neuropathy and ulnar nerve neuropathy. I understand the pain. I hurt so much. It's like when your sick, you know there will be a day you will feel better and not be sick any longer, but with these types of diseases, there's not going to be a day that its completely gone. In one flare I had I couldn't focus at all. It was like hearing white noise in my brain drowning out everything.
It's so hard to get a fibro diagnosis, I got very lucky with my diagnosis story. Doctors still don't understand it and there's no test that categorically proves you do or don't have it. Then doctors also often don't believe patients about their pain and fatigue, this especially common in higher weight patients because doctors will just say we need to lose weight (which is a whole other conversation). But there are also overlaps and similarities between fibro, ME/CFS, what you've been diagnosed with, and other conditions, so you could get diagnosed with one but really have the other. I was diagnosed with fibro but only because my doctor at the time didn't seem to believe that ME was an actual condition, but my fatigue and brain fog have always been slightly worse than my pain. So who knows. I'm so sorry you have to deal with this, you're not alone. 💜
Just thank you for sharing. With my flares, they can last as long as 6 or 7 months. The area where I live, has a facility for people that are dealing with addiction. It makes it hard to be comfortable speaking with ANYONE in the medical field because the first thing you are met with is 'I'm not giving you a prescription for anything!" This includes a condescending look. Most times I just don't say anything about what i am experiencing. My only outlet is finding others who understand. Only people that live with this understand. We are not looking for pity. Sometimes we just need to acknowledge what's happening to us in a safe space. When you said you didn't want to sound like you were complaining, it brought tears to my eyes. I spoke volumes. I get all these weird things happening at random times and it helps knowing I'm not in this by myself. I live your life and walk in your shoes. I get it, so again thank you for helping me with my voice.
Jonette, thank you so much for your kind words and for sharing your story. I totally understand and I'm glad my video helped you feel less alone in the daily struggle. As you can see from the other comments, you and I are far from being the only ones struggling with this condition. Take care of yourself and believe in yourself, no matter what others say.
Thank you for sharing 🙏 My job is to help people victim of a accidents or illness to find another job. Now I can undestand really clearly what is dealing with chronic pain every day.
Jobs and any close relationship is such a challenge! It can lead to depression- feeling like I am always disappointing people and there is the all too familiar “ misunderstanding “ folks that have no idea what it feels like in my body. One time at a meeting I barely was able to attend, the leader said,” You sure look uncomfortable “ in a way that sounded like criticism . Another lady asked me how I was. I said ,”ok” And she too sounded critical,” Just ok? Not blessed and full of joy? You should be.” ( I said I am being honest- which is much more valuable than being phony) Well, yeah- every muscle in my body is spasmodic and it hurts to breathe. It’s a miracle I am sitting here in a group setting at all. My husband loves to socialize and it’s a real struggle. People think I am just being “ unfriendly “ It makes me sad.
Thank you for making this video. I've been kinda lost since my initial diagnosis. I'm having a pretty bad flare right now. Entire body feels like there are fire ants all over me. Lights and noise make me nauseous and my muscle feel like I just finished running a marathon.
I'v had fibro sx since I was 5-6 . (I'm 65 now) . Dr.'s are impossible to deal with . Always have been .I just can't them to "get it" ! . They seem to think they know everything that is Fibro . I see them as the enemy any more . Symptoms are off the chart all the time . I have to do EVERYTHING in stages . Simple things may take me all day or several days . Highly frustrating . I have a terrible time with appointments , good ones or bad . People , even family are not understanding even ones who know how sick I am ! Nausea and dizziness are a constant , even in my short sleep (I never sleep more than 4-5 hours) I'm dreaming I'm sick and wake up dashing for a bucket . I'm miserable all the time . No family or friends , alone in the most extreme sense of the word . I hate getting up in the a.m. What's the pont ? I'v tried everything thing and I mean EVERYTHING . I'd do anything to have a break , a friend that "gets it" . . . 🥴😔😥😱🤢🤮😫
Thank you so much for watching and sharing your experience Sharon. I totally relate to having to do things in stages, it can be so frustrating sometimes.
@@AndreaJSeverson Thanks so much for the answer back Andrea ! ! . . 😁 . I feel like a "Weepy Wanda'" sometimes venting about this disease from hell , . 😡 . but I thought if anyone would get it , it'd be you ! . . Thanks again ! . . 💐
@@EC-yd9yv Dear EC,... We're pioneers..That's the best way I can describe us!....." NO " pioneer in anything has had an easy time. We can read the history books for proof!!🌎... I too am sorry your suffering with this disease from hell. ..🥵..Here's something else I didn't say in my comment. "I'M A NURSE" !!..🧑⚕️..I had access to 21 providers I worked with everyday that I was able to drag myself to work. ..😫..Soooo many times I was sicker than the patients we saw !! ..😔.."NONE" of that collection of trained medical minds could come up with ANY answers..🤔... I did hours of research on my own and took charge of my own "discoveries". I'd say 95%of what I learned were things I learned on my own. ..📗..📑..📘..Mostly trial and error. .?...⚖️..Trying things on a "did it work , or was I still just as sick" ? kind of experimentation ...🤨..It was a long and many times, painful process..🥴. ..Dr.'s eventually came "TO ME" for advice on how to treat their fibro. patients. (A big deal in the medical world!) I'll share with you one really big thing I found that gave me any relief , was directly linked to my consumption of sugar and what I'll call "hard carbs" . When I ate anything with refined sugar ..."OH MY GOD" !! ..was I ever sick!..🤢🤮.. All my symptoms were off the charts! ..📈..Hard carbs were just the same , only the symptoms were just a little later in coming. (Hard carbs are Bread, Rice, Pasta and Potatoes) Trying to eliminate sugar and carbs became a long tedious process..😱... It was a real eye opener as to how addicted we "ALL " are to sugar. .🤪..It's in everything, ...😳..you'd be SHOCKED ! I WAS !!! It's a great way for food producers to keep us coming back for more. Ever have the , "well I really prefer this brand over that brand syndrome" ? Check the sugar content in both of them ! Experience tells me the brand you like has more sugar! ..😡..We're Really, really addicted to their products! Try this approach.... I know it seems like just one more perhaps , off the wall suggestion, but as I found I was soooo sick what did I have to lose. ? 🤷. . Don't go into it thinking this was a cure, far from it...😔.. But, did it help? Yes! ..😳..quite a bit! Enough to help me to not wish I wasn't here ! ...(after all I'm well enough to use emojis, even though I'm in bed) . LOL..😁...Keep going my sister! ..👍..The best help you'll get at this point is from others who suffer like we do and what they've found helps. The medical profession is lagging woefully behind ! ....🤷..All my best and most especially my prayers are with you ! ...🫂..🙏....💐 ..( If you'd like to contact me ? I'm just a click away!)
It is encouraging to hear about fibro from someone else and so validating. I was so shocked when I was diagnosed…but the diagnosis was never explained or understood. I just kept pushing through until I had my first heart attack and disregarded early symptoms because I was used to pushing through the pain due to my high stress levels and caregiver responsibilities. The brain fog and profound fatigue and sleep deprivation are really difficult. Your podcast is helpful! I am a former type A, energizer bunny myself!
Yes, I think there's a lot of us former type A/energizer bunnies in the fibro community. The brain fog and fatigue are unbearable at times when you're used to your brain working in a certain way.
Thank you for sharing your story with us. This validates what I go through daily. I have realized that my childhood was not spent lazy when it was really spent in pain physically and mentally. When I was growing up fibro was not known as a disease but laziness and stubbornness. My Mom was a wonderful nurse but she didn't know that Fibromyalgia was.real. I've had this all of my life. I have a wonderful husband that tries to understand and knows when I don't feel.good. I lost my last job because of this. I just take one day at a time.
Hi Andrea, a good description on the fibro as I myself have suffered for just over 4 years now. The hardest thing to do is try and explain how you feel to somebody that doesn’t understand or even grasp what you are feeling at that point. Even here in the UK some people still regard it as the being lazy disease or as an excuse not to do anything. Feeling like you are being judged out in public as I struggle to walk. I was so used to doing everything myself until fibro struck and now I feel like my independence has been taken away as things I used to do I have to get help with now and also had to quit work. This is why I turned to TH-cam and set up a channel to try and get my story out but you described it better. Well done 👌
That's so great that you have started a channel to talk about your experience. We all experience this condition differently and it's so important that as many of us as possible are sharing our experiences. :)
Thank you so much for sharing this video. It’s good to know that you’re not the only one that experiences these symptoms. I’m 61 years old and have suffered from it since 2009. When I have flareups it feels like I have the flu but worse. Thank you so much for sharing this video. I’m so glad that I happened across your video.
Thank you for putting this into words...I have never been able to verbalize what it feels like. And even if I could I am constantly doubting whether or not it's real or if it's as big of a deal as I always make it out to be. When I got diagnosed almost 2 years ago and I explained it to my family, husband and friends people just kind of said, "Oof, that sucks. I hope you feel better soon." I've been waiting to feel "better"...ever single day since 2019. I have not. :/ Keep going warrior, you've got this! #buildaladder
Oh wow, I totally relate to people saying “feel better soon”. Like, it doesn’t work that way but thanks? It’s definitely real and if you feel like it’s a big deal some days, and your symptoms are worse, you shouldn’t doubt that. I feel that way too a lot. Thanks for sharing your experience. ❤️
Oh that itch that hurts!! It's something they don't tell you about and it's enough to drive a person crazy. I'll be unable to sleep and be scratching till i draw blood. Just hearing that other people have it to is a huge help cause I used to think I was losing my mind trying to describe it to normies and even pharmacists in my attempt to get help.
Thanks for this very informative video! I’m going through several symptoms tonight and your video has made me realize that I’m not alone in this, others feel like I do, with all these strange pains, itching, rashes, eye pain; etc........ no one understands this weirdness unless they are living in it. I’m 63 wonder how younger women working, being mothers, wives, exist having a bad day, I can’t imagine how you do it. I had cataract surgery a few years ago and had a very painful time during the surgery and afterwards. I still have eye pain and many other problems, symptoms. Good luck and thanks for explaining Fibro.
Thank you for making this video, the more people I watch I realise how varying they can be. Nice to meet you. Trying to get a diagnosis at the moment. But i have been given medication, which is helping with the nerve and electricity.... I so get that, the consitency of it, I never know how to describe the pain. This was so helpful ❤❤❤
Thank you for sharing your story, can totally relate. I’ve had FMS for two decades and am thankful I’ve been able to diminish my symptoms through diet, lifestyle changes, and movement therapies. But I recall a time when I couldn’t go anywhere without a flare taking over. Fatigue was my worst symptom too. I had to ditch my type A, Aries perfectionism, was forced to. Going with the flow, pain or fatigue or not, became my motto. I think just the stress of wanting my body to be ‘normal’ was my worst enemy. Discovering and accepting that there IS no normal was huge for me. Now having a support team that’s on board with this, different story lol. So happy to hear you are treating your body with love and acceptance through this. So easy to detach from self. Blessings and take care!
Accepting that there is no normal is sooooo huge! In another video I also talk about how I had to separate the condition from my body, like, I hate having fibro but I don't hate my body. It's not my body's fault, my body and I are doing the best we can. I think this goes along with what you said about it being easy to detach from the self. I can't make my body the enemy, it's fighting this condition as much as I am. Thanks for watching and sharing your experience!
Yepper, the Chronic Fatigue analogous to FM is perhaps the Worst. Feeling Totally DRAINED is miserable. I'm 70 yo, and should not be so Tired and Drained. Agreed: diet changes, quality herbal and vitamin supplementation , hydration , medatation, stretching, etc., are VITAL treatments. It's a Psyche thing too.... Emotional Trauma, minor or Severe, Affects your Well being. Watch Caroline Leaf, on YT channels - she is a Neurologist on a different level.
@@Chiroman527sorry to hear you are drained. That was my worst symptom I feel. Pain is treatable… fatigue not so much. Or so I thought! Last fall I found out I have an autoimmune arthritis, psoriatic arthritis. I have it low key, but it’s been the source of much joint pain and fatigue. Since then I’ve been prescribed immune suppressants to stop joint degradation, as I was forced to stop working because of it. I’m also taking high dose D3, magnesium, omega 3, and CBD/THC. Fatigue is literally a non issue now that I’m tackling my systemic inflammation. Hoping things will stay this way… Thanks for sharing your thoughts and take care!
@@midwesta-framer649 Thank you for your response and well wishes. Systemic Inflammation is right. I was examined by a Rheumatologist, lloking for RA - Negative. She also looked for Anklyiosing Spondyliosis (AK), whereby the discs degenerate so badly that the spinal vertebrea Fuse together form the arthritic bone growth - osteophytes. Negative. Caught COVID in late January. and now have a squamous Cell Carcinoma on my face from UV rays of sun damage. I'm taking Vitamins D3, K2; Magnesium Theorate; Krill oil for Omega 3s, CBD w/o THC, Mushroom Supplements, just started Spiralina ( which is a Algae for Detoxing the biody), Turmeric,and more. None will Cure the conditions, hoping for just to cease the progression. Body Breakdown is progressive. Having been a 40 + year smoker ( 1 Packer a day), and not Drinking enough water by a long shot, are major contributors to where I am now. Once a person has Degenerative Disc Disease (DDD), there is nothing that will "grow" new spinal discs.
Just stumbled on this video. I was diagnosed in 2005. Im sitting at the dining room table with so much pain know. I always kept my house clean. Them days are over i probably sleep 15 hours In the daytime after sleeping all knight. I have not been able to work since 2010. And i Worked 14 hours a day for years. Almost evey time i go lay down i pray i wont wake up. And before i would never Have them kind of thought s. Dam what did i do to deserve This. And bless everyone who Is suffering from fibromyalgia Or anything hoping the best for all of you ❤❤❤❤❤❤
I am interested that you mentioned an increase in your depression during your Fibro flare. My depression is very severe right now along with my Fibro flare. Also I am struggling to get over the symptoms of COVID that I first got a month ago. Your video resonates with my current situation. Thank you for putting words to what I am feeling.
Thanks for watching Amy! Yes, the worse my flare is the worse my depression gets, and sometimes if I'm really depressed or anxious that can bring on a flare, so it's a very delicate balance. You are not alone. Hope you feel a little better soon. :)
Thank you for this video. I've been struggling with Fibro since 2017... During the last 3 or 4 days, my routine is a total mess....I've completely forgotten that this could be a flare. I was pushing myself so hard, blaming me for being disorganized and lazy... Thank you for reminding me to be kind to myself.❤
I totally relate to this. I've been dealing with it since 2016, so a similar amount of time, and after so many years, I've gotten better at managing it but then always feel blindsided when a flare comes on. It's not always easy to remember to be kind to ourselves when fibro just becomes part of our daily lives. Glad this video could provide a reminder for you.
Thank u for sharing🙏 I’m at the end of 2 week flare and I’m needing to not feel alone. I relate 1000%! U nailed it on the pain. It gets soooooooooo old- day in and day out🥵 My whole life revolves around my pain. Oh and what u said about the brain fog- I’m a type A perfectionist too and it drives me mad being so horribly off😡
My PEMF “Bemer” has helped so much!!!!!!! That and Turmeric! Boswellia!!! Never stop searching for improvements, better eating and seeking out functional medicine doctors. Praying for you all!
Thanks for watching Mildred! I'm so sorry you're struggling with the doctors, it's unfortunately very common to have them not believe you. Keep advocating for yourself and remember that whatever the doctors say, what you're feeling is real.
Having this illness 🤒 is No joke I am Sooo Thankful to hear and see people Sharing this 🙏 🙌 No Medicines has been Able to Help Me Unless U just Want to be Sleep All Day ! 😒 Only Chiropractic care and Who can Afford That twice a week
For me no, thankfully my eyesight has pretty much stayed the same and my prescription changes at the same slow rate that it always did prior to my diagnosis (I've worn glasses since I was 5). But we're all so different so it wouldn't surprise me if others have dealt with vision changes and eye pain.
Having fibro has become so incredibly painful for me..it's a daily pain that never goes away..the nerve pain is intense.Has anyone had pain so bad in their head that even your hair feels like it hurts ? You are not alone if this happens to you..thanks for the video
I hate when the nerve pain gets so bad. And I've definitely had my scalp hurt so bad that it feels like my hair hurts, thankfully that doesn't happen often for me. Thanks for watching and sharing your experience Vanessa!
I was diagnosed with fibromyalgia in 2008. Yes, there are times when I have tender spots in my head, painful especially to the touch. At one point I thought I might have had brain cancer, being a breast cancer survivor. Test revealed, no cancer in my head. When I was first diagnosed with fibromyalgia I didn’t believe the doctor. Over the years my body aches and pain have gotten worst. I am now a believer.
Yes I even said that to someone not long ago. Unable to brush my hair or even take a shower because the water hurts hitting my skin. While having all of the pain and chronic fatigue is so bad, I have to cancel on people so often. I can wake up and know I'm not going to be able to even get dressed for the day. Many of the days are weekends and I don't understand how this correlates.
It is so validating to hear someone talk about this. For years I just thought it was normal to be in so much pain everyday. I didn't get diagnosed until I was 29 and it helped me go in the right direction because then I could build my "I swear I'm a functioning human" support arsenal lol.
The worst time of my Fibro life was when my husband passed away. I remember coming home and going right to bed. I was so mentally and physically stressed and distraught all I wanted was to block it out. When I woke up, I was in so much pain that if I moved I wanted to scream, and I did. I went to the hospital, emergency, and I tried to explain that I had fibromyalgia and I was having a really bad flare. I couldn't stand anyone touching me, but I let them do my blood pressure and listen to my heart. The doctor kept asking me what can I do for you, and I said help me with the pain. They were not going to give me anything, and I tried to explain my bones feel broken. Finally a nurse must have understood I wasn't just their for pain meds, and they gave me a shot of morphine. After about an hour, my pain level dropped to a more tolerable level 7-8, and my daughter took me home. I do not know what pain level I was experiencing when I got to the hospital, all I can say is I mercifully never got that feeling again.
I'm so sorry. Stress and emotional trauma definitely makes fibro worse, so I'm not surprised you had such a strong fibro response when your husband passed. I'm so glad a nurse finally listened and helped you. Thank you for sharing your experience.
Thank you for posting this it makes my life hard but knowing that someone else goes threw the same thing makes me feel less crazy I just got diagnosed at 16 around 3 months ago and this helps me so much ❤️❤️
Brilliant description!! Found this particularly helpful to think about breaking down the components of a flare. Loved the idea of working WITH your body to fight the real enemy (fibro). I've spent the past 30+ years being frustrated and angry AT my body. It's validating to know that the extended flare periods are not just me being lazy, giving up, not being motivated, etc. You nailed the explanation about how even moderate pain can be debilitating, draining and exhausting when it extends over a long stretch of time. This video has provided me with more emotional and mental relief than anything I've come across on a very long time. You are very relatable and articulate. Thank you for spending your time and energy to educate and encourage! ❣️
It always amazes me the stories people share after watching this video, I had no idea it would be seen by so many people and hearing all of your stories has been so validating to me as well. Thank you for sharing your thoughts and for watching this video. I'm so glad it provided some relief, that's the best thing I could hear today. :)
I think if it was diagnosed and studied properly we’d find that the numbers of men and women with fibro is actually more even. A colleague at work also has fibro, he was the first man I’d met who’d been diagnosed. I’m so sorry you have to deal with this. Thank you for watching and sharing your experience.
Thank for posting this I’ve had fibromyalgia for thirty five years and yes getting a cold can cause a flare I also have vestibular migraine I was diagnosed by an ear nose and throat specialist I have acute sinus infections which bring on a vestibular migraine attack and along with that I have a fibromyalgia flare I don’t want to alarm fibromyalgia sufferers but having fibromyalgia puts you at risk for other diseases I had interstitial cystitis a rare disease that affects the bladder it’s excruciating painful after twelve years of complete misery and trying every remedy I made the decision to have my bladder removed I was sixty two and the surgery and the recovery was very difficult but I’m so glad I did it I wear a bag and at times I don’t like the whole thing at times but having that pain go away was fantastic so at first I had ibs not uncommon in fibromyalgia then it was the diagnosis of fibromyalgia which is miserable then the intestinal cystitis and now the vestibular migraine which is very rare and then my fibromyalgia flares up along with an ibs flare no I am not looking for sympathy I’ve just learned that as horrendous as it is I remind myself that some people are much sicker than me and everyday I count my blessings and practice self care and I practice gratitude it doesn’t come easy it takes time to accept all the crap we deal with we are all warriors we wish that people would understand what an invisible illness is like stay strong and you are right we need to listen to our body
Thank you for watching and for sharing your experience. I'm sorry you've suffered so much with this condition and other conditions that have come along. Practicing gratitude is so difficult but you're right that it can make a big difference.
Thank you for this. Going through a flare right now, and I feel like I'm falling face down into depression again. You explained the regular symptoms vs flare ups very well. I think I can count the completely pain free days in my life on both hands, and I'm mostly used to the constant pain. What really gets me is the fatigue and the brain fog. Got an Adhd diagnosis recently, and anecdotally (not sure if there are studies), they are often comorbid. I found that adhd meds helped with the overall fibro somewhat, especially in the beginning. Overall I feel the hormonal dysregulation of dopamine, serontonine, melatonin and norepinephrine might be a good place to start when looking for relief.
I hope your flare passes soon and you get some relief. Thanks for watching and sharing your experience. I suspect I have ADHD and have an appointment scheduled soon to get tested. I've started seeing a few people talking about the connection between ADHD and fibro and find that really interestinig.
On lovely, what a perfect description of life with Fibromyalgia! I have it as a secondary condition to degenerative disc disease and mixed connective tissue disease/RA/OA. I've had it 34 years and have actually been ready to jump out of my bedroom window! The anxiety and depression is awful and the guilt that you feel about having something wrong with you all the time, and moaning! As I've been told many times by family rtf and docs 'it's not your fault...you didn't ask for this!' Thank you and my thoughts are with you! Xxx
Thank you for watching and commenting Sian! I appreciate hearing your experience. The mental health aspect of dealing with fibro and other overlapping conditions is so overlooked sometimes.
@@AndreaJSeverson oh yes, absolutely! Living with any chronic condition is bound to have an impact on anyone no matter what it is. Hope you'll be OK lovely and that perhaps more answers will be on the table soon. Take care! Xx
Interesting, because I have a different experience with the fibromyalgia experience. I think to myself, if someone had this pain for 15 seconds they would scream and yell and run to the hospital and wonder how I could tolerate this every waking second. The stabbing pain I get wakes me up in the middle of the night. It's my first sensation upon waking and my last before sleeping. I think I must have it quite severely, therefore.
I’m so sorry. It definitely affects some people worse than others. I have friends with it who are constantly in high levels of pain. Thank you for watching and sharing your experience.
I've learned so much from you that I didn't even after having fibro for 25 plus years: clavicle pain, brain fog, pain settling. It is said that fibro doesn't get worse over time but for me it has, not in a catastrophic way but definitely worse. And I have the pain all the time now. Its not so much a flare anymore. I worked till I was 64 and just couldn't do it any more. Good video.
Oh my gosh, that’s so true to be that smart and struggle daily and memory forgetting things when you’re sick!!! I’d be in the bathroom and realized left the groceries in the car!!! it’s so exhausting battling the stuff never ends. It’s always something new Arash, a pain, blurry eyes, exhaustion, memory issues, and the list goes on.
Journals or symptom tracker apps can be really helpful, just to see if you can recognize patterns. But sometimes it's just too much for people to keep track of. Thanks for watching!
My fatigue has been really bad the last several weeks, it's definitely a bummer. I've had a few days as you describe where I can't stand for long. The other day I couldn't even manage a slow walk around my neighborhood. It will get better but it's hard in the meantime.
Yes & now its become a daily thing for me after years of fibromyalgia & RA. Unsure of what to do about it , its problematic showering & standing at the sink those sorts of things have become a real struggle. I have got myself a treadmill & Im hoping that it will help me get past that
I don't know what is worse - having these flares (mine is pretty much a regular occurrence now) or having a family that thinks you are crazy or just simply making things up. I sometimes feel suicidal! Seriously! I don't want to live like this. This isn't the kind of life I envisioned for myself! What could be more debilitating than having mind fog all the time and nobody believes you because you've always been the best there is at whatever you do. I had wanted to sit down and write a novel or anything that can help others learn. The good thing I found out about myself is willing to "rise above" the pain and convert it into something beautiful like a painting. Which I did! I couldn't believe I have it in me. I'm on overdrive now in my painting because I don't want to wake up one day feeling I'm completely paralyzed to do anything or worse, just so out of it I'd wish I were dead! It's so debilitating. Thank you for sharing your story. I thought I was just making things up! Until I watched this!
I'm so sorry you're struggling. You're definitely not making things up and you are not alone, as the other comments on this video can show you. It's a very challenging condition, made worse by its invisibility. I love that painting has been helpful, that's how I feel about writing. :) Thanks for watching and sharing your experience!
This video popped up whilst watching some things on fibro. Explains it so well so will save to show to family and friends as trying to get them to understand ia difficult, esp when i can't string a swntence together. I'm currently in a flare after flu and lots of stress at work. Thank you for sharing
Ugh, getting the flu, or even a cold, when you have fibro is no fun. Especially when you add work stress on top of it all. Hope this flare passes soon for you.
Thank you so much I can really understand how you're feeling because I go through mega mega flare-ups as well as fibromyalgia have other issues and the fact that I'm 75 years old is really really debilitating. Take care
Hi Andrea,I just wanted to thank you for taking the time,in your latest vlog about the symptoms of Fibromyalgia, I was diagnosed 7 months ago,the pain has gradually got worse over these last 3 months especially in my Knees, and countless headaches,and brain fog,the pain can be severe sometimes, but I know it is better to let it be rather than pushing through it,like yourself I sometimes have to spend a full day or even several days where I am in bed,but once again thank you Andrea, Take Care of yourself yours Sincerely David Jamieson
Oh, my word I have been trying to figure out what was up with my back itching. Sometimes it can be multiple times a day to once a week. It is so intense and almost painful. Wow
Does anyone else get the extreme crushing pain on both sides of rib cage! This happens at times standing by sink with dishes,chopping vegetables etc. ,It feels like someone is crushing my ribs with their hands!
I get pain in my mid back/rib cage area some times, if I’ve been sitting wrong. For me it seems more structural than regular fibro pain and seeing a physical therapist regularly has helped with that. I also get debilitating pain in my lower back if I’m standing at the kitchen counter washing dishes or chopping vegetables for too long.
currently in a wicked bad flare and i immediately started crying when u said depression bc i am lower than low w the depression. the pain has been awful,everywhere as well as the GI issues im 42 but feel like im 92. i dont feel so alone having a comunity here so thank u for sharing ok now im balling bc what u said around 10:25 people do not understand. also im forever being told i take forever for anything and that im so slow. and the fog is soo frustrating. i know the word but cannot think of it. it wont come out. i am saying yes after all your descriptions! it takes me hours to wake and im costantly exhausted. sleep is like NONE and i have insomnia so bad then want to sleep all day. i have 3 young children (single mom) and they dont understand of course
Oh my gosh, I just want to give you a hug. You are definitely not alone, but I understand the feeling. All we can do is our best, and if people can't understand, or are unwilling to understand, that's on them. I'm 40, but I relate to feeling 92. Some days are much harder than others. Thank you for watching and for sharing your experience.
You know cbd does help with pain fibro for me.. its hereditary in my family.. I also have 3 autoimmune diseases and depression/ anxiety.. so pain is my middle name lol. The feeling liek I have asunburn is aweful as well as the fatigue. I love that you talk about this and it feels like Im not alone.. thank you fellow warrior!!💜💜💜
CBD definitely helps. Using it for the past 8 years. With. Vit D. Vit B. Magnesium. Celebrex and cortisone when necessary. Plus tramadol for pain. Cbd helped me get rid of brain fog and gives a good nights sleep. Blessings to all
Hi - this is exactly the video I needed to see today. I always feel like I can’t properly articulate how it feels to be in a flare, but you describe it perfectly. I was also diagnosed in 2016 but have really struggled to accept this and fighting ourselves is certainly not the answer. I’m so glad to have found this video today and it has given me a lot to think about. Thank you and I hope you are currently in a good space and that your symptoms are under control ❤️
I can't hardly remember what not having any kind of pain in my body actually felt like. I know there was life before fibromyalgia and chronic fatigue but it seems like a far way dream.
I totally agree. It's been six years since my diagnosis, and probably 7, almost 8 since my symptoms started coming on, but it's hard to remember how I felt before then. Thank you for watching!
Can relate too this comment a lot. Have had fibromyalgia since late 20’s and iam 60 now. In 2013 I was in accident and was hit by car in cross walk and have mild tramatic brain injury, bad arthritis, degenerative disk disease, spinal headaches and migraines that were made worse by accident in addition too worse fibromyalgia symptoms. Iam now in pain management and have been since 2013 . Never thought I would ever need something so strong too control my pain.
Agree
I was diagnosed at 19 and I will be 58 this summer. I have no idea what it feels like to have no pain whatsoever.
@@Washougalite1 🙏🏾🫂
Another thing that's difficult to deal with is its an "invisible illness." 😕 People don't believe you're suffering because you appear "normal." Like we don't have to explain anything to them.
The invisibility and appearance of "normal" is so difficult. It's so hard to get people to understand our limitations when they don't believe we're sick or that we're as sick as we say we are.
I'm so sick (no pun intended) of hearing "Well, ... You look o.k." .. I could slap the next person who said it. I often wished I'd turn purple so people'd believe me ! ... 💟...🤢
That’s what Ptsd is like…invisible
@@katherinemnusa I have both . And it hurts my feelings when my older kids tell me I can control it and push through it
Have a better attitude .
Its Hard!! People act like Your Pretending sometimes..
The pain is throughout my whole body along with my skin is on fire. I’ve been diagnosed 1997. I didn’t know that this even existed. My family and friends thought that I was faking before the diagnosis and even after the diagnosis they thought that I was faking. So I learned not to express the pain during the flare ups.
It’s so funny when they are not feeling well that they except you to care for them but they cannot reciprocate the care when it’s you who is in need.
It's so hard when close friends and family don't believe in the diagnosis. It just adds a whole other level of emotional pain to not be accepted and supported. Thank you for watching Roselena! :)
Awe yes! The ol’ hypochondriac gal! That is just not fun at all! I’ve been there until they found my broken spine and ruptured discs then they were silent, still have fibromyalgia and it’s worse due to nerve diseases, so stay strong and know YOU are not alone!!♥️ sometimes having a chronic illness scares the hell out of loved ones so they belittle or act angry etc. that’s my own history. We are here as a community and I’m glad they don’t have this cross to bear, meaning fibro, I doubt they could handle it
Sometimes it feels like a boa constrictor has wrapped around me and squeezing.
Yes❤
I'm in a bad flare-up right now and this is EXACTLY how I feel! Thank you for saying this because I was having a hard time finding these symptoms as Fibro symptoms! ❤
I was recently diagnosed with fibro…. It’s shocking to hear other people describe what I thought was “just me” thank you
When I started researching fibro around the time of my diagnosis, it shocked me seeing all the little bizarre things that I was finding people talking about. I also thought those things were "just me". We're not alone. Thanks for watching!
Not to be a dick.. but there’s no really objective medical exam that can diagnose you, it’s all self reported symptoms. Just like mental health disorders. It’s why a lot of people get denied for disability benefits or doctors won’t approve a placard. There has been people who say they have fibromyalgia but really don’t. They may just have anxiety or depression. Which let’s be honest, can cause you to have pain when you don’t. Again, it goes back to the first problem. Not saying all that is right but they are legitimate issues.
:) I remember feeling shocked myself. It's all feelings at once.
I was shocked also…..now just had my first flare, thought I was dying….I needed this information ❣️
💕
I am 57 year old. I have suffered for more than ,30 years. It's nice to know that someone else gets it. It is a tough illness. It really is.
You're definitely not alone. I'm sorry you've been struggling with it for so many years. Thanks for watching Terri. :)
Yes I’m 52 and been through years of working and I just can’t anymore. My last job was a 4 hour shift and my body was telling me No more.. I started to get numbness down my face and Auras! I wanted to work so bad bc I know the pay cut I was going to get without.
Does anyone find that after a certain amount of time trying to lay down to try & sleep that the pain gathers in certain areas so intensely that it eventually becomes so excruciating that you need to get up?? Thank you SO much for the video btw!!
It's rare for me, but yes, this does happen sometimes. It's the worst. Thanks for watching!
Yes, quite regularly. I give up, get my heating pad & a good read.
I was like this lastnight, all the pain collected in my pelvis and legs and I ended up awake until 4. Tried some ibuprofen that took the edge off a bit (I haven't been prescribed any pain meds yet) but from the waist down I felt like I had the flu
Yes this happens to me. I can’t lay my head on the pillow because the pain is so big. This is why I get little sleep because I feel better sitting up (no pillow touching my head snd neck).
Do get up all the time...
The burning and joint pain, stiffness and stabbing pain, migraines, ibs and back pain Is terrible.
Everything hurts sitting, laying or standing, noise or stress makes it worse.
None stop pain and 10 times more in a flare.
The whole body feels like it’s been sprained.
People have different levels.
My normal level of pain everyday is always at 5-6 and gets worse as soon as I move.
I have Severe ME a lot more symptom, paralysis, FND, Nausea. I am mostly Bedridden and use a power chair.
Have to be driven to appointment,
The brain fog is bad my vision also is affected.
Thanks for this video it explain a lot more then most.
Giving some idea what we are experiencing,
Some worse then others.
I pray the Lord will keep you strong to continue your work.
Gentle hugs friend. It's so difficult. I totally relate to starting the day at a 5 level pain. Thanks for watching and sharing your experience.
@@AndreaJSeverson
💓😍
What’s ME?
@@faithwalker2287 mecfs. Google it.
It was very bad for me also but pain medication (tramadol or ultram) made things better, bearable.
Anyones skin hurt? Even a breeze hurts much less touching -clothes bother me. Sometimes feel on fire
I don't know that I get pain but my skin does get more sensitive. Things that don't usually feel scratchy will feel uncomfortable on some days. It's not fun.
Sometimes
I to get where wearing a bra is so difficult. Yes some fabrics an be painful. So look for fabrics that are soft and silky and feels light. I stay away from heavy fabrics lol Iike leathers and heavier wools
I have been in a bad flare up since January 2021 and it's now June 2021. I now take cbd full spectrum to help deal with it. As for my skin issues, if you touch me it literally feels like someone rubbing sandpaper over it. I wear my clothing 1 size larger because of the pain. I was diagnosed in 1998 after 2 years of trying to get answers. Don't ever let them tell you that it doesn't progress because it does. God bless each of you and I wish you luck in your mission that you have been given to deal with!! May you find your 1 small but happy place in your quest for relief!!😘😻😻
My skin feels like I have a sun burn especially on my legs. I have to be very careful drying off after a shower or even moving my legs in bed.
After my daughters wedding day, I woke up and couldn't walk. I had been so busy with the travel and plans, that I got too fatigued. I was on my feet from morning till night that day and woke up to so much pain. I finally was able to hang on the walls to get to the bathroom. This flare was the scariest thing!. I understand all your comments and hope you have many better days than bad ones.
Weddings are exhausting under the best of circumstances, but when you have a chronic illness, it's almost impossible. Thank you for watching and sharing your comment. :)
what did you eat at your daughter's wedding?
@@conniesambrookexactly. Food is your enemy. Eat all natural. Nothing artificial. Read every lable .
It’s so hard waking up each day feeling like you didn’t sleep at all and this was every day. I’m just grateful I don’t have to go to work every day.
I'm very luck that my work schedule is so flexible and only a couple of days are super physically active. Thanks for watching!
Is nice when you realize you're not alone in this situation. I'm currently in a flare and yes, is hard and sometimes your body doesn't want to move but your mind is going so fast. But still, it's just another flare and it won't last. I really enjoyed your video. Thanks for sharing.
I really does help knowing we're not alone. Thank you for watching and commenting. I hope your flare passes soon! :)
Help me understand my gf has that
Im crying right now that what you are tell8ng us & the comments .im not alone.everyone thought i was looking for attention .thank you for this .love ya sweetie
"it's not me against my body, it's my body and me against the Fibro" I will forever live by this saying now. Thank you for this video, I haven't found many people publicly talk so in detail about anything Fibro related and it's helped me see some of the symptoms I have are shared throughout. So really, thank you!
Thanks for watching Emily. I’m really glad my words resonated. Seeing the fibro as the enemy rather than my body as the enemy was a huge mental shift that made a massive difference to how I handled my fibromyalgia. Since making that shift it’s made it much easier to get through the bad days and be kind to myself.
I've never heard anyone explain fibro as well as you do ..thanks I feel your pain as a fibro sister.
Thank you so much for this comment. I never know how people are going to respond to these videos, so this means a lot. :)
I agree with you
I have been watching TH-cam for a few years and never thought to look up fibromyalgia. I was diagnosed with fibromyalgia (chronic fatigue) about 16 years ago. I am so glad to have found someone that speaks my language. I have been in a flare-up for the past week. Aching pain in shoulders, elbows, back, blurry vision and stomach pain like I've been coughing for hours. I feel comforted that someone else truly understands. Looking forward to supporting you in future
So glad you found me! :) Hope it helped you feel less alone. If you've looked at the other comments you'll see there are quite a lot of us, some of our symptoms are similar and some are different. I definitely understand. :)
Hi there, I hear you say blurry vision and wondered if it's the same as I've been having? All of a sudden my one eye, sometimes both, will see double vision, but this will be in one eye! I've had a migraine before but when I was very young and this caused blindness and blurry vision too, its similar to that. I've read it's a migraine online, cant remember the name. Anyway, blessings and hugs from another fibro friend. 😀
Please try Turmeric boswellia and maybe add celery seed extract. Definitely Turmeric!!!!
I feel your pain too, I just figure it out that I have this symptomp, (see me comment above) are you feel better now ? Or u get cure already ?? i feel so much uncomfortable and sooo cronic fatigue and many more until I tired to explain to people or friends what I trully have.
When I was diagnosed my doctor told me I could get SSD so I called an attorney and got the ball rolling. I went to the Social Security Drs and 6 months later got my first check. In the letter that SS sent me it said I had been granted SSD because I had a very severe case of Fibromyalgia. I cried. I felt like Finally! Someone believes me enough to even help me! Sleep is very important but I don’t lay around in bed. When I wake up I get up, there’s no going back to sleep. I pace myself and know my limits. When I push through the limits I pay for it the next day. Thank you for this video.
I have lupus, fibro, raynaud's, sjogren's, hypothyroidism and the list goes on. You did a really good job of describing what we go through and breaking down the day to day. It might not be extremely severe every day, but having pain every second of every minute of every day of every week of every YEAR, it rrreally gets to you. It's physically impossible to think correctly when you are in pain. Imagine that pain constantly!
That's a lot to deal with, I'm so sorry. I'm glad you felt I did a good job of describing what it's like day to day. It really is exhausting, even when it's not as severe, to deal with it every day, year after year.
I've been looking up videos like this lately. Mostly to feel not alone. I was struggling with pain for a long time without knowing what it was, and I was diagnosed with Fibro in the fall last year. Your description of the pain... is *exactly* my experience too. When I have a really, really good day it's like a 3. Your frustrations too about people thinking you're just being a whimp... same here omg. It's a vicious cycle for me too. Stress is a huge trigger for me, so I stress, flare up, then stress cause I flare up, and it just keeps going on. I am lucky enough to have a lot of support from my boyfriend of 5 years, who even goes with me to every doctor appointment. ♥
You are definitely not alone. I totally relate to your comment. Stress has been something I've been really focused on lately, it's a huge trigger for me as well. That's great that your boyfriend is so supportive, it makes such a difference to have someone in your corner. Thanks for watching!
Lady you are telling my story. All you said is my life for more than 25 years. Now 62 and days I want to Leave the world. Thanks for sharing.
Thanks for sharing your experience.
Thank you for sharing. I literally feel your pain, every day, as a sister Fibro girl.💜 Stay Strong!
Thanks for watching and for commenting, it always helps to be reminded I'm not alone.😊💜
JeSuisJusteMoi 💞💜
Me too
❤🙏❤
Your comment “giving myself permission” is something I just started to allow myself after 17 years! Was a difficult attitude for me and allow myself to let go of household tasks. I am minimizing my belongings nis…slowly because I have 5 of my parents estates to clean, update, and sell. Also, changing my diet, chair yoga, and OMM therapy. “Shifting mindset” really helps! (I have other autoimmune diseases also along with PYSD. Sorting through it all with a flare up is challenging). Staying kind to myself is key now!
Giving myself permission to slow down and rest was a huge game changer for me. I'm so glad you're doing the same. Thanks for watching and sharing your experience Sandy! :)
Thank you for this video. I have been dealing with chronic pain for the past 10 years, but had several terrible encounters with the medical staff in my area, so for fear of not being believed, I didn't get it checked.
Fast forward 5 years and I got way worse really rapidly and now, in 2023, I have made my health a priority. My doctor believes me. She's young and enthusiastic that we will find what's going on, but no matter what it is, I have flares and it gets BAD.
So thank you! Because everything you just said, EVERYTHING, is how I feel right now. Thank you so much and good luck to you.
I'm so glad you found a doctor who believes you! That's truly the key. Whether it's fibromyalgia or something else, you need a doctor who listens and believes you when you explain your symptoms. Thanks for watching!
I've been avoiding looking too much into this because I was afraid of Dr. Googling myself into a diagnosis until my doctor and I talked about it (and we did) but lord, when you described the "itching so bad it's painful" I could've CRIED that shit is real and it makes me feel insane
I always thought I was alone with the itch pain, until people started commenting on this video. It's so hard! Thanks for watching. :)
Thank you for sharing! I was recently diagnosed with fibromyalgia and stumbled across your video while doing a bit of research on it since it's such an alien word for me. It's amazing how much I can relate to what you've said.
I went to see one doctor after another and another and then another again for bodily joint pains I've been having that started out as mild and then progressed to severe fatigue for no apparent reason since about a year and a half ago. All blood work came out either normal or negative for autoimmune disorders. Regular painkillers stopped working so I stopped taking them altogether even though the pain gets so unbearable it woke me up in the middle of the night and I'd cry my eyes out back to sleep, unable to do anything else.
Fibro fog is something I started experiencing in the recent months. This bothers me a lot since I have a PhD in engineering and yet I couldn't do simple maths calculations in my head without taking out the calculator. At first I thought it was a side effect of an antidepressant I've been taking for almost 4 years now, although it never really affected me this badly before. My doctor changed the medications because of that but the fogginess is still very much there.
Sorry for the long comment on here but I'm looking forward to watching your other videos here!
Thank you for sharing your experience. I'm glad the video was helpful and relatable. I remember how it felt when I was first diagnosed and started researching it myself, it can be so daunting. I know what you mean about the frustration with the brain fog. I have a PhD in English and am a writer and some days it's just so hard to write. I know what I want to say but I can't get my brain to process fast enough for me to type.
You are a beautiful, powerful woman. Thank you for helping us better understand what our daughter is dealing with.
Oh thank you so much! I'm so happy if this helps you understand what she's going through. :)
Thank you. I feel more validated after listening to this. I was recently diagnosed, but have lived with the symptoms for a long time. It's good to have answers, and know that I'm not crazy or imagining these things!
Thanks for watching Nancy. You're definitely not alone. I'm glad you've received your official diagnosis, I know that was hugely validating for me. You are absolutely not crazy or imagining things.
💕 same here..
My daughter was diagnosed 9 years ago, when she turned 30. Her symptoms however have been increasing both in number and severity over the past 9 years. New ones creep in, but the old ones seem to hang around and are getting worse. She has been in a major flare up for over 7 months now. It started in June, with a UTI, which actually was a UTI ( she can get all the symptoms of a UTI, including fever and blood in her urine, when apparently it's not an infection, but just her fibro) She was treated for it with antibiotics, and the infection cleared, but the symptoms didn't go away, they still haven't gone away. They fade a bit, but then return again. Obviously she was in pain, and as usual she put her daily increasing fatigue down to that, but within a month she was so bad she couldn't even get out of bed to the bathroom without collapsing. She had to be helped to be dressed, washed, do her hair etc, and yes, every bone, every joint, every muscle in her body hurt. It even hurt if you touched her. She has medication for this, but it knocks out her coordination, and her ability to concentrate completely, so she only uses it when absolutely necessary. It was necessary this time, especially since the cluster headaches had kicked in with a vengeance. She was pretty much bedridden until mid August, and then it looked like the flare might be starting to subside, although mouth and nose ulcers had kicked in, and the headaches were still lurking, she could actually move around a bit again. She had numbness alternating with the weird pins and needles, stabbing pains she gets in her hands and feet, but although still exhausted, she cut down a bit on the meds, and tried getting back to normal. Then she got pain in her chest, left side, front and back, with problems breathing. Because of the lockdown, she couldn't get to actually see a doctor, and she tested negative for Covid, so it was presumed she had costochondritis, though there was no obvious reason for this, but again probably just fibro related. She was told to take the painkillers again, and basically just get on with it, just like with the UTIs. For a month she couldn't breathe when she lay down to sleep, she needed to sleep sitting up, and leaning forward, to ease the pain and the pressure on her chest. It wasn't until the end of September that it started to settle a little, but by then she was back to being totally fatigued as well. The ulcers were still there, coming and going in batches, but always present, the UTIs, which are not UTIs, were still hanging around, sometimes better, sometimes worse, and the chest pains would kick in every time she tried to do anything, even just making a cup of tea......but it's just a fibroflare...... Fevers came and went, her hands blistered up for no apparent reason, She had to start using eyedrops because her eyes were so dry from the fibro, and a bout of sudden, random attacks of extreme vertigo now made it impossible for her to leave the house anyway, without having someone with her, not that she could walk very far without having to stop and rest.....not so easy in the Winter. Christmas was a struggle, she had a short bout of Trigeminal Neuralgia over the holiday period. Fortunately she doesn't get these so often any more, once the Cluster Headaches started, they seemed to phase out a bit, but it still sometimes kicks in during a bad bout. She gets bouts of TMJ as well, but that, like the IBS and the Brain fog and the random fainting fits, is I'm afraid just par for the course. Things, touch wood, have settled a little now we are into the New Year. She's still extremely fatigued, and her joints are visibly very painful and stiff, but she's back to trying to do stuff indoors, to get back to some form of normality. She's still getting varying degrees of fibro UTI, chest pain, ulcers, so it's still very up and down on a daily basis, but she'll settle for all over pain, frequent naps and lots of peace and quiet as a baseline. The one thing she'll never settle for is the Brain fog. I think she'd do anything to be rid of that. But that's fibro. I empathise with anyone and everyone who has it. It is a dreadful condition.
Thank you for sharing you and your daughter's experience with this condition. It's amazing how it can affect some people so severely and others have more mild cases. Gentle hugs to you both and I hope she gets some relief soon.
Some of her symptoms sound like lupus....xx
Thank you for posting this
I have great sympathy for you and your daughter. I know that doesn’t make either of you feel any better but it does let you know I understand and care. My heart goes out to you both. And, yes, I understand. I too have this horrible disease.
I try to explain to people what fibromyalgia is like and what is like having and it has so many different symptoms. The only way I've been able to explain it that they understand it, is what I called the spoon theory, what the spoon therapy is each morning you're given five spoons or 10 spoons however many spoons you want to give and every time you do something that takes away a spoon and when you are out of spoons you can't do anymore you are done you you physically mentally spiritually emotionally cannot do one more thing and to make them understand that your spoons ran out and that's it for me they have finally been able to understand.
Perfect description of the pain scale and how it is tolerable or intolerable depending on how many days you are going through it. Thank you for your articulation. 20+ years myself and still haven't perfected how I talk with family and friends about fibro.
Thank you for watching Sonia. I'm glad I was able to accurately describe the pain scale, I agree that it's so hard to get friends and family to understand.
My fibromyalgia pain is a entire body Indian burn feeling :(. It is nice hearing I’m not alone
You're definitely not alone. Thanks for watching!
Thank you so much for this. As a fellow fibro sister, this so hits home. It's hard to explain to others what you are going through, even loved ones.
Thanks for watching! Sending you soft hugs and kind wishes.
How happy that after 2011 I find someone that entirely feels how I do!! 👼
You're definitely not alone! Thanks for watching!
Me too…❤
I’m crying right now because I knew that other people dealt with this, but I never had someone explain what I’m going through exactly as they are going through it. Thank you SO much for this video!
Thanks for watching Raquelle! I'm glad you enjoyed it. You are definitely not alone and I know how much it can mean to have that validation. :)
Oh my goodness! The sudden, severe itch that's so bad it hurts on the bottom of my feet! I'm so relieved to hear something else has that. I never thought of it as fibro related since I don't have that much tenderness to touch or skin pain, but now I'll be more mindful of my itching as a sign of a flare possibly coming on. The more things I can keep an eye on as a sign to really take care of myself, the better. Thanks!
Me too burning itchy that dosent go away with scratching.
Yeah, I saw someone in an article talking about the severe itch on the bottom of the foot and it blew my mind that it was an actual thing! Thanks for watching.
Oh my that horrible extreme itch and burning, in my feet ,drives me crazy sometimes. The more I rub and scratch, the worse it gets.
I am exhausted every day. Even when I get a good night's sleep.
Yep. I'm the same way.
While we are at rest the body is in pain and fighting the pain. A true sleep with deep rest, like sleep is supposed to be, does not happen , often, if at all.
I've been in constant flare mode for more years than I can care to remember.
❤
This felt like every word was coming out of my mouth. I’m in a flare now and I feel everything you are talking about. ❤️
You are definitely not alone, so many of us feel the same way.
great video:
1) mental health
2) morning description
3) communication
4) not hiding it
Thanks for watching Nicole!
Thank you so much for truly expressing this and explaining it! And you did NOT come across as complaining!
Thanks for watching! I'm glad I did a good job explaining it. :)
I admire you for continuing to work. I had a good job but the flares were so bad, I ended up quitting and the job stress only magnified it. On top of all this, I have spinal conditions from neck to feet so it makes everything so much more “fun”. The only problem is I hate having to communicate my problems. With my husband, I’ve already told him that when I’m quiet, I’m silently suffering and trying to cope. When I’m in the bedroom with the door closed, my senses and body are overwhelming me and I just need to be alone. I’ve tried a lot. Heating pads/cooling pads(which can be a double edged sword because my skin might be sensitive), Tylenol (rarely works), stretching (which can burn so badly sometimes), Doterra Deep Blue Rub (again... smell overload), turmeric (may not work sometimes), massagers (can be painful and cause more pain after)... The list is never-ending.
It's so hard, I'm so sorry you struggle with it so much. I totally agree that a huge part of the problem is trying to communicate what you're dealing with to other people, it's so hard to explain. But suffering in silence makes it even worse. Thanks for watching and sharing your experiences.
Thank you and commenters. I hope we all get something that can cure this terrible condition we suffer from. Hugs to you all. ❤ hang in there!
Thanks for watching! Hug to you as well.
I feel your pain. You have it down to exactly what I feel constantly everyday for 10+ yrs. Thank you for making me feel that I'm not alone. I can't work at all. And the guilt is horrible of not being productive.
You are definitely not alone. And I know it's hard, but you shouldn't feel guilty. It's not your fault, you have a medical condition that causes limitations. We're all just doing our best. Soft hugs! Thank you for watching. ❤️
10 years?? So you mean to tell me it doesn't get better! I was diagnosed 3 months ago. I'm cure having a flare and I know for stress is the trigger
Thimna, it's different for everyone. I was diagnosed almost 6 years ago. In some ways my pain is worse and the flares can be more intense, but I've also gotten better at recognizing the signs a flare is coming and make adjustments so it's rare for me to have a flare that totally wipes me out. Stress is a huge trigger for me as well and I've had to actively work, this past year especially, to make significant life changes to help manage my stress and prioritize rest, exercise, proper meals, and drinking enough water. Those changes have made a huge difference and I'm starting to feel better now than I have in years. It might only be temporary but I'm enjoying it while it lasts.
I really enjoyed this Andrea, and sent it to my daughter who also has fibromyalgia. I think you gave a very detailed and informative explanation of having a flareup. You have a good understanding of it, especially since you’ve only had your diagnosis such a short time. I’m happy to see more of your posts on fibromyalgia. Blessings🦋Victoria
Thanks for watching! I really enjoy doing these fibromyalgia videos, I always hope they'll help people.
Thank you. Just coming out of a 6 week flare. I know I’m not crazy but hearing it from someone else exactly what I am going through is actually very soothing
You're definitely not crazy. Hope you are starting to feel a little better now. :)
The more I hear other people's stories the more I feel validated that I'm going through an actual thing. I've been in almost constant pain in my joints for almost 10 years and I'm only 22. So many people think I can't hurt because I'm so young, but there's never a moment of peace. Lately, I've been so frustrated and finally gone to see a doctor. Everything hurts, nerves, muscles, joints. I thought it was just stress but it constantly happens. My brain fog has been so bad, I can't focus on anything for very long and even typing gets the better of me sometimes. I'm so frustrated constantly because of the pain and not knowing why, then my anxiety and depression crop up. I can't tell you how validating hearing your experience has been for me. I find myself completely relating to almost all of what your symptoms are. So far I haven't been diagnosed, only told that I don't have rheumatoid arthritis, wish me luck in getting another appointment scheduled soon so I can look into this medically. Thank you so much for sharing your story.
Thank you for sharing your story Zak. The diagnosis process can be long and exhausting, good luck as you move forward. Just know that you are not alone and all your feelings and pain is real and valid.
@@AndreaJSeverson thank you! I have an appointment with a primary care physician on Wednesday to get his opinion and diagnosis for potential fibromyalgia, so far I've been tested extensively for rheumatoid arthritis and thank god all of thay came back negative. I wouldn't have scheduled an appointment without hearing your story, so thank you! I hope you've been doing well!
@@Arraby42 thank you for that! I got diagnosed with fibro in October and it's been a bit of a ride trying to navigate it, I'm currently just taking Tylenol and trying to get through it along with my antidepressants for the depression and anxiety I have along with it. I hope you're doing well!
Dear Andrea J. Severson, Thank you. It is rare to find a person who has fibromyalgia actually describing what it feels like. I feel all these things you describe here. I have fibromyalgia too. Best wishes from Bess in UK 😊
Thank you for watching Bess. I appreciate your kind words.
Thank you for sharing this video. I’m in a major flare up right now and the fatigue is to the EXTREME and pain is brutal. I hear ya with the fibro fog too. It’s so strange when it occurs. I hope to get better so I can be employed again. It’s a daily struggle.
Ugh, the fibro fog is the one symptom I can't seem to adjust to. I can power through the pain and fatigue but the fog is such a disconcerting feeling. Thanks for watching! Hope your flare passes soon.
@@AndreaJSeverson thank you. I’m slowly getting there! Now following you.
I’m now on SSD I’m now 59 and a woman and it’s been a real rough ride especially because people can’t see it mental body brain internal and stress kills ya and touch can just bring tears 😭 I hope someday they look at helping those of us that suffer
Thank you . Most people can’t understand Fibromyalgia. You gave a good explanation.
Thank you for watching Sarah! :)
I am back again with another fibro flare. It started last week and hasn’t really let up. My flares can last over a month. My legs get the worse of it. I had actually forgotten I had left a comment on here 7 months ago. I managed a walk today but even that was a struggle for me. And my legs have been so stiff today too. And you are right it’s not a case of taking a tablet and everything is fine. I have been dealing with this for over 14 years. And not enough sleep makes my fibromyalgia worse. Worse case scenario the pain brings on a panic attack for me. I have been back and forth to different doctors about this so many times with no luck.
I've been learning how important sleep is. Recognizing that I need more sleep than the average person and letting myself have it is so important. Hope your current flare passes soon.
Good wishes to you. I've had it for 6 years. It's the never ending and relentlessness of it that crushes me. It absolutely grinds you down. Love to all those fighting this dreadful battle.
The neverending relentlessness is definitely the worst part. Thank you for watching. :)
Sleep helps me with my neuropathy. My mom swears I have fibro, but my neuro doesn't diagnose fibro. I have been diagnosed with small fiber neuropathy and ulnar nerve neuropathy. I understand the pain. I hurt so much. It's like when your sick, you know there will be a day you will feel better and not be sick any longer, but with these types of diseases, there's not going to be a day that its completely gone. In one flare I had I couldn't focus at all. It was like hearing white noise in my brain drowning out everything.
It's so hard to get a fibro diagnosis, I got very lucky with my diagnosis story. Doctors still don't understand it and there's no test that categorically proves you do or don't have it. Then doctors also often don't believe patients about their pain and fatigue, this especially common in higher weight patients because doctors will just say we need to lose weight (which is a whole other conversation). But there are also overlaps and similarities between fibro, ME/CFS, what you've been diagnosed with, and other conditions, so you could get diagnosed with one but really have the other. I was diagnosed with fibro but only because my doctor at the time didn't seem to believe that ME was an actual condition, but my fatigue and brain fog have always been slightly worse than my pain. So who knows. I'm so sorry you have to deal with this, you're not alone. 💜
I know how u feel I have told my dr about my pain and he tells me u might have fibro but doesn’t diagnose me
There now is a test. FM/a test paid for by Medicare and most insurances in the US.
Rhuematologist can diagnose fibro.
Just thank you for sharing. With my flares, they can last as long as 6 or 7 months. The area where I live, has a facility for people that are dealing with addiction. It makes it hard to be comfortable speaking with ANYONE in the medical field because the first thing you are met with is 'I'm not giving you a prescription for anything!" This includes a condescending look. Most times I just don't say anything about what i am experiencing. My only outlet is finding others who understand. Only people that live with this understand. We are not looking for pity. Sometimes we just need to acknowledge what's happening to us in a safe space. When you said you didn't want to sound like you were complaining, it brought tears to my eyes. I spoke volumes. I get all these weird things happening at random times and it helps knowing I'm not in this by myself. I live your life and walk in your shoes. I get it, so again thank you for helping me with my voice.
Jonette, thank you so much for your kind words and for sharing your story. I totally understand and I'm glad my video helped you feel less alone in the daily struggle. As you can see from the other comments, you and I are far from being the only ones struggling with this condition. Take care of yourself and believe in yourself, no matter what others say.
Thank you for sharing 🙏 My job is to help people victim of a accidents or illness to find another job. Now I can undestand really clearly what is dealing with chronic pain every day.
I'm so happy this has been a good resource for you. :)
Jobs and any close relationship is such a challenge! It can lead to depression- feeling like I am always disappointing people and there is the all too familiar “ misunderstanding “ folks that have no idea what it feels like in my body.
One time at a meeting I barely was able to attend, the leader said,” You sure look uncomfortable “ in a way that sounded like criticism . Another lady asked me how I was. I said ,”ok”
And she too sounded critical,” Just ok? Not blessed and full of joy? You should be.”
( I said I am being honest- which is much more valuable than being phony)
Well, yeah- every muscle in my body is spasmodic and it hurts to breathe. It’s a miracle I am sitting here in a group setting at all.
My husband loves to socialize and it’s a real struggle. People think I am just being “ unfriendly “ It makes me sad.
Thank you for making this video. I've been kinda lost since my initial diagnosis. I'm having a pretty bad flare right now. Entire body feels like there are fire ants all over me. Lights and noise make me nauseous and my muscle feel like I just finished running a marathon.
Thanks for watching. I hope your flare passes soon and you get some relief.
I'v had fibro sx since I was 5-6 . (I'm 65 now) . Dr.'s are impossible to deal with . Always have been .I just can't them to "get it" ! . They seem to think they know everything that is Fibro . I see them as the enemy any more . Symptoms are off the chart all the time . I have to do EVERYTHING in stages . Simple things may take me all day or several days . Highly frustrating . I have a terrible time with appointments , good ones or bad . People , even family are not understanding even ones who know how sick I am ! Nausea and dizziness are a constant , even in my short sleep (I never sleep more than 4-5 hours) I'm dreaming I'm sick and wake up dashing for a bucket . I'm miserable all the time . No family or friends , alone in the most extreme sense of the word . I hate getting up in the a.m. What's the pont ? I'v tried everything thing and I mean EVERYTHING . I'd do anything to have a break , a friend that "gets it" . . . 🥴😔😥😱🤢🤮😫
Thank you so much for watching and sharing your experience Sharon. I totally relate to having to do things in stages, it can be so frustrating sometimes.
@@AndreaJSeverson Thanks so much for the answer back Andrea ! ! . . 😁 . I feel like a "Weepy Wanda'" sometimes venting about this disease from hell , . 😡 . but I thought if anyone would get it , it'd be you ! . . Thanks again ! . . 💐
I'm 64 ... I could have wrote your comment, going through the same nightmare for 30 yrs. Sending much love cares n prayers 💖🙏✨🌺
@@EC-yd9yv Dear EC,... We're pioneers..That's the best way I can describe us!....." NO " pioneer in anything has had an easy time. We can read the history books for proof!!🌎... I too am sorry your suffering with this disease from hell. ..🥵..Here's something else I didn't say in my comment. "I'M A NURSE" !!..🧑⚕️..I had access to 21 providers I worked with everyday that I was able to drag myself to work. ..😫..Soooo many times I was sicker than the patients we saw !! ..😔.."NONE" of that collection of trained medical minds could come up with ANY answers..🤔... I did hours of research on my own and took charge of my own "discoveries". I'd say 95%of what I learned were things I learned on my own. ..📗..📑..📘..Mostly trial and error. .?...⚖️..Trying things on a "did it work , or was I still just as sick" ? kind of experimentation ...🤨..It was a long and many times, painful process..🥴. ..Dr.'s eventually came "TO ME" for advice on how to treat their fibro. patients. (A big deal in the medical world!) I'll share with you one really big thing I found that gave me any relief , was directly linked to my consumption of sugar and what I'll call "hard carbs" . When I ate anything with refined sugar ..."OH MY GOD" !! ..was I ever sick!..🤢🤮.. All my symptoms were off the charts! ..📈..Hard carbs were just the same , only the symptoms were just a little later in coming. (Hard carbs are Bread, Rice, Pasta and Potatoes) Trying to eliminate sugar and carbs became a long tedious process..😱... It was a real eye opener as to how addicted we "ALL " are to sugar. .🤪..It's in everything, ...😳..you'd be SHOCKED ! I WAS !!! It's a great way for food producers to keep us coming back for more. Ever have the , "well I really prefer this brand over that brand syndrome" ? Check the sugar content in both of them ! Experience tells me the brand you like has more sugar! ..😡..We're Really, really addicted to their products! Try this approach.... I know it seems like just one more perhaps , off the wall suggestion, but as I found I was soooo sick what did I have to lose. ? 🤷. . Don't go into it thinking this was a cure, far from it...😔.. But, did it help? Yes! ..😳..quite a bit! Enough to help me to not wish I wasn't here ! ...(after all I'm well enough to use emojis, even though I'm in bed) . LOL..😁...Keep going my sister! ..👍..The best help you'll get at this point is from others who suffer like we do and what they've found helps. The medical profession is lagging woefully behind ! ....🤷..All my best and most especially my prayers are with you ! ...🫂..🙏....💐 ..( If you'd like to contact me ? I'm just a click away!)
It is encouraging to hear about fibro from someone else and so validating. I was so shocked when I was diagnosed…but the diagnosis was never explained or understood. I just kept pushing through until I had my first heart attack and disregarded early symptoms because I was used to pushing through the pain due to my high stress levels and caregiver responsibilities. The brain fog and profound fatigue and sleep deprivation are really difficult. Your podcast is helpful! I am a former type A, energizer bunny myself!
Yes, I think there's a lot of us former type A/energizer bunnies in the fibro community. The brain fog and fatigue are unbearable at times when you're used to your brain working in a certain way.
Thank you for helping me realize I'm not crazy. I too suffer fibromyalgia. If ppl don't suffer they don't get it.
You are definitely not crazy. I hear that so often on these videos. You're not crazy and you're not alone. We've all felt that way.
Thank you for sharing your story with us. This validates what I go through daily. I have realized that my childhood was not spent lazy when it was really spent in pain physically and mentally. When I was growing up fibro was not known as a disease but laziness and stubbornness. My Mom was a wonderful nurse but she didn't know that Fibromyalgia was.real.
I've had this all of my life. I have a wonderful husband that tries to understand and knows when I don't feel.good. I lost my last job because of this. I just take one day at a time.
Thank you for watching, and for your kind comment. Taking things one day at a time is really all any of us can do.
Hi Andrea, a good description on the fibro as I myself have suffered for just over 4 years now. The hardest thing to do is try and explain how you feel to somebody that doesn’t understand or even grasp what you are feeling at that point. Even here in the UK some people still regard it as the being lazy disease or as an excuse not to do anything. Feeling like you are being judged out in public as I struggle to walk. I was so used to doing everything myself until fibro struck and now I feel like my independence has been taken away as things I used to do I have to get help with now and also had to quit work. This is why I turned to TH-cam and set up a channel to try and get my story out but you described it better. Well done 👌
That's so great that you have started a channel to talk about your experience. We all experience this condition differently and it's so important that as many of us as possible are sharing our experiences. :)
Thank you so much for sharing this video. It’s good to know that you’re not the only one that experiences these symptoms. I’m 61 years old and have suffered from it since 2009. When I have flareups it feels like I have the flu but worse. Thank you so much for sharing this video. I’m so glad that I happened across your video.
We're not alone, for sure. It's been such a comfort over the years since publishing this video to hear everyone's experiences. :)
Thank you for putting this into words...I have never been able to verbalize what it feels like. And even if I could I am constantly doubting whether or not it's real or if it's as big of a deal as I always make it out to be. When I got diagnosed almost 2 years ago and I explained it to my family, husband and friends people just kind of said, "Oof, that sucks. I hope you feel better soon." I've been waiting to feel "better"...ever single day since 2019. I have not. :/ Keep going warrior, you've got this! #buildaladder
Oh wow, I totally relate to people saying “feel better soon”. Like, it doesn’t work that way but thanks? It’s definitely real and if you feel like it’s a big deal some days, and your symptoms are worse, you shouldn’t doubt that. I feel that way too a lot. Thanks for sharing your experience. ❤️
Oh that itch that hurts!! It's something they don't tell you about and it's enough to drive a person crazy. I'll be unable to sleep and be scratching till i draw blood. Just hearing that other people have it to is a huge help cause I used to think I was losing my mind trying to describe it to normies and even pharmacists in my attempt to get help.
Since publishing this video, having so many of you say you have that symptom too has made me feel so much better. I really thought it was just me!
Thanks for this very informative video! I’m going through several symptoms tonight and your video has made me realize that I’m not alone in this, others feel like I do, with all these strange pains, itching, rashes, eye pain; etc........ no one understands this weirdness unless they are living in it. I’m 63 wonder how younger women working, being mothers, wives, exist having a bad day, I can’t imagine how you do it. I had cataract surgery a few years ago and had a very painful time during the surgery and afterwards. I still have eye pain and many other problems, symptoms. Good luck and thanks for explaining Fibro.
Thanks for watching and sharing your experience. It’s so nice hearing from people who understand what I’m talking about. ❤️
Thank you for making this video, the more people I watch I realise how varying they can be.
Nice to meet you.
Trying to get a diagnosis at the moment.
But i have been given medication, which is helping with the nerve and electricity....
I so get that, the consitency of it, I never know how to describe the pain.
This was so helpful ❤❤❤
Thanks for watching, I'm glad this video was helpful! :)
Thank you for sharing your story, can totally relate. I’ve had FMS for two decades and am thankful I’ve been able to diminish my symptoms through diet, lifestyle changes, and movement therapies. But I recall a time when I couldn’t go anywhere without a flare taking over. Fatigue was my worst symptom too. I had to ditch my type A, Aries perfectionism, was forced to. Going with the flow, pain or fatigue or not, became my motto. I think just the stress of wanting my body to be ‘normal’ was my worst enemy. Discovering and accepting that there IS no normal was huge for me. Now having a support team that’s on board with this, different story lol. So happy to hear you are treating your body with love and acceptance through this. So easy to detach from self. Blessings and take care!
Accepting that there is no normal is sooooo huge! In another video I also talk about how I had to separate the condition from my body, like, I hate having fibro but I don't hate my body. It's not my body's fault, my body and I are doing the best we can. I think this goes along with what you said about it being easy to detach from the self. I can't make my body the enemy, it's fighting this condition as much as I am. Thanks for watching and sharing your experience!
Yepper, the Chronic Fatigue analogous to FM is perhaps the Worst. Feeling Totally DRAINED is miserable. I'm 70 yo, and should not be so Tired and Drained. Agreed: diet changes, quality herbal and vitamin supplementation , hydration , medatation, stretching, etc., are VITAL treatments. It's a Psyche thing too.... Emotional Trauma, minor or Severe, Affects your Well being. Watch Caroline Leaf, on YT channels - she is a Neurologist on a different level.
@@Chiroman527sorry to hear you are drained. That was my worst symptom I feel. Pain is treatable… fatigue not so much. Or so I thought!
Last fall I found out I have an autoimmune arthritis, psoriatic arthritis. I have it low key, but it’s been the source of much joint pain and fatigue. Since then I’ve been prescribed immune suppressants to stop joint degradation, as I was forced to stop working because of it. I’m also taking high dose D3, magnesium, omega 3, and CBD/THC. Fatigue is literally a non issue now that I’m tackling my systemic inflammation. Hoping things will stay this way…
Thanks for sharing your thoughts and take care!
@@midwesta-framer649 Thank you for your response and well wishes. Systemic Inflammation is right. I was examined by a Rheumatologist, lloking for RA - Negative. She also looked for Anklyiosing Spondyliosis (AK), whereby the discs degenerate so badly that the spinal vertebrea Fuse together form the arthritic bone growth - osteophytes. Negative. Caught COVID in late January. and now have a squamous Cell Carcinoma on my face from UV rays of sun damage. I'm taking Vitamins D3, K2; Magnesium Theorate; Krill oil for Omega 3s, CBD w/o THC, Mushroom Supplements, just started Spiralina ( which is a Algae for Detoxing the biody), Turmeric,and more. None will Cure the conditions, hoping for just to cease the progression. Body Breakdown is progressive. Having been a 40 + year smoker ( 1 Packer a day), and not Drinking enough water by a long shot, are major contributors to where I am now. Once a person has Degenerative Disc Disease (DDD), there is nothing that will "grow" new spinal discs.
Just stumbled on this video.
I was diagnosed in 2005. Im sitting at the dining room table with so much pain know. I always kept my house clean. Them days are over i probably sleep 15 hours
In the daytime after sleeping all knight. I have not been able to work since 2010. And i
Worked 14 hours a day for years. Almost evey time i go lay down i pray i wont wake up. And before i would never
Have them kind of thought s.
Dam what did i do to deserve
This. And bless everyone who
Is suffering from fibromyalgia
Or anything hoping the best for all of you ❤❤❤❤❤❤
Sending you so much love and support, I'm sorry you struggle so much with it. This condition can be so debilitating for some people.
I am interested that you mentioned an increase in your depression during your Fibro flare. My depression is very severe right now along with my Fibro flare. Also I am struggling to get over the symptoms of COVID that I first got a month ago. Your video resonates with my current situation. Thank you for putting words to what I am feeling.
Thanks for watching Amy! Yes, the worse my flare is the worse my depression gets, and sometimes if I'm really depressed or anxious that can bring on a flare, so it's a very delicate balance. You are not alone. Hope you feel a little better soon. :)
Thank you for this video. I've been struggling with Fibro since 2017...
During the last 3 or 4 days, my routine is a total mess....I've completely forgotten that this could be a flare.
I was pushing myself so hard, blaming me for being disorganized and lazy...
Thank you for reminding me to be kind to myself.❤
I totally relate to this. I've been dealing with it since 2016, so a similar amount of time, and after so many years, I've gotten better at managing it but then always feel blindsided when a flare comes on. It's not always easy to remember to be kind to ourselves when fibro just becomes part of our daily lives. Glad this video could provide a reminder for you.
Thank u for sharing🙏 I’m at the end of 2 week flare and I’m needing to not feel alone. I relate 1000%! U nailed it on the pain. It gets soooooooooo old- day in and day out🥵 My whole life revolves around my pain.
Oh and what u said about the brain fog- I’m a type A perfectionist too and it drives me mad being so horribly off😡
Thanks for watching! The brain fog is the worst, it drives me nuts.
believe it or not my service dog helps a lot with my fibro flares and such glad you are coming out of it
That's fantastic that your service dog is able to help you with your flares! :)
My PEMF “Bemer” has helped so much!!!!!!! That and Turmeric! Boswellia!!!
Never stop searching for improvements, better eating and seeking out functional medicine doctors. Praying for you all!
I take turmeric, among other things. :) Thanks for watching!
I am going through the doctor's not believing me. It is so frustrating. You are explaining exactly what the pain feels like. Thank you
Thanks for watching Mildred! I'm so sorry you're struggling with the doctors, it's unfortunately very common to have them not believe you. Keep advocating for yourself and remember that whatever the doctors say, what you're feeling is real.
LOVE this video - amazing.
Thanks so much! I never know how these fibro chat videos are going to be received, so this comment means so much to me. :)
Having this illness 🤒 is No joke I am Sooo Thankful to hear and see people Sharing this 🙏 🙌 No Medicines has been Able to Help Me Unless U just Want to be Sleep All Day ! 😒 Only Chiropractic care and Who can Afford That twice a week
Thanks for watching! It's definitely no joke, such a hard condition to live with. I would see my physical therapist daily if I could afford it!
Does fibromyalgia affect your eyes causing your Vision to change and be blurry with sharp pain in your at times eye as well???
For me no, thankfully my eyesight has pretty much stayed the same and my prescription changes at the same slow rate that it always did prior to my diagnosis (I've worn glasses since I was 5). But we're all so different so it wouldn't surprise me if others have dealt with vision changes and eye pain.
Having fibro has become so incredibly painful for me..it's a daily pain that never goes away..the nerve pain is intense.Has anyone had pain so bad in their head that even your hair feels like it hurts ? You are not alone if this happens to you..thanks for the video
I hate when the nerve pain gets so bad. And I've definitely had my scalp hurt so bad that it feels like my hair hurts, thankfully that doesn't happen often for me. Thanks for watching and sharing your experience Vanessa!
I was diagnosed with fibromyalgia in 2008. Yes, there are times when I have tender spots in my head, painful especially to the touch. At one point I thought I might have had brain cancer, being a breast cancer survivor. Test revealed, no cancer in my head. When I was first diagnosed with fibromyalgia I didn’t believe the doctor. Over the years my body aches and pain have gotten worst. I am now a believer.
Yes I even said that to someone not long ago. Unable to brush my hair or even take a shower because the water hurts hitting my skin. While having all of the pain and chronic fatigue is so bad, I have to cancel on people so often. I can wake up and know I'm not going to be able to even get dressed for the day. Many of the days are weekends and I don't understand how this correlates.
It is so validating to hear someone talk about this. For years I just thought it was normal to be in so much pain everyday. I didn't get diagnosed until I was 29 and it helped me go in the right direction because then I could build my "I swear I'm a functioning human" support arsenal lol.
I'm so glad you found this video validating. I always hope that people will find it and feel less alone. Thanks for watching!
Thank you thank you thank you. I was crying and cheering throughout your video!
Aww you're welcome! Gentle hug! I never know how these fibro related videos are going to be received so comments like this make me so happy. :)
I watched this to help me understand my friend's fibro, but your tips at the end were actually helpful for me with ME/CFS as well. Thank you!
There's so much overlap/similarities between Fibro and ME/CFS, so I'm glad the video was helpful in both ways for you. :) Thanks for watching!
The worst time of my Fibro life was when my husband passed away. I remember coming home and going right to bed. I was so mentally and physically stressed and distraught all I wanted was to block it out. When I woke up, I was in so much pain that if I moved I wanted to scream, and I did. I went to the hospital, emergency, and I tried to explain that I had fibromyalgia and I was having a really bad flare. I couldn't stand anyone touching me, but I let them do my blood pressure and listen to my heart. The doctor kept asking me what can I do for you, and I said help me with the pain. They were not going to give me anything, and I tried to explain my bones feel broken. Finally a nurse must have understood I wasn't just their for pain meds, and they gave me a shot of morphine. After about an hour, my pain level dropped to a more tolerable level 7-8, and my daughter took me home. I do not know what pain level I was experiencing when I got to the hospital, all I can say is I mercifully never got that feeling again.
I'm so sorry. Stress and emotional trauma definitely makes fibro worse, so I'm not surprised you had such a strong fibro response when your husband passed. I'm so glad a nurse finally listened and helped you. Thank you for sharing your experience.
Thank you!! Thank you so much for saying exactly what most of us Fibro Warriors experience.
Thanks for watching Autumn! It always helps to hear I'm not alone in feeling this way.
❤❤❤❤
Thank you for posting this it makes my life hard but knowing that someone else goes threw the same thing makes me feel less crazy I just got diagnosed at 16 around 3 months ago and this helps me so much ❤️❤️
I'm so glad it helped you feel less alone, and you're not crazy. Big hug. ❤️
Brilliant description!! Found this particularly helpful to think about breaking down the components of a flare. Loved the idea of working WITH your body to fight the real enemy (fibro). I've spent the past 30+ years being frustrated and angry AT my body. It's validating to know that the extended flare periods are not just me being lazy, giving up, not being motivated, etc. You nailed the explanation about how even moderate pain can be debilitating, draining and exhausting when it extends over a long stretch of time. This video has provided me with more emotional and mental relief than anything I've come across on a very long time. You are very relatable and articulate. Thank you for spending your time and energy to educate and encourage! ❣️
It always amazes me the stories people share after watching this video, I had no idea it would be seen by so many people and hearing all of your stories has been so validating to me as well. Thank you for sharing your thoughts and for watching this video. I'm so glad it provided some relief, that's the best thing I could hear today. :)
There are less men that get fibromyalgia. Well, I'm one of them. Listening to your symptoms, and dealing with it, sounds so familiar.
I think if it was diagnosed and studied properly we’d find that the numbers of men and women with fibro is actually more even. A colleague at work also has fibro, he was the first man I’d met who’d been diagnosed. I’m so sorry you have to deal with this. Thank you for watching and sharing your experience.
Thank for posting this I’ve had fibromyalgia for thirty five years and yes getting a cold can cause a flare I also have vestibular migraine I was diagnosed by an ear nose and throat specialist I have acute sinus infections which bring on a vestibular migraine attack and along with that I have a fibromyalgia flare I don’t want to alarm fibromyalgia sufferers but having fibromyalgia puts you at risk for other diseases I had interstitial cystitis a rare disease that affects the bladder it’s excruciating painful after twelve years of complete misery and trying every remedy I made the decision to have my bladder removed I was sixty two and the surgery and the recovery was very difficult but I’m so glad I did it I wear a bag and at times I don’t like the whole thing at times but having that pain go away was fantastic so at first I had ibs not uncommon in fibromyalgia then it was the diagnosis of fibromyalgia which is miserable then the intestinal cystitis and now the vestibular migraine which is very rare and then my fibromyalgia flares up along with an ibs flare no I am not looking for sympathy I’ve just learned that as horrendous as it is I remind myself that some people are much sicker than me and everyday I count my blessings and practice self care and I practice gratitude it doesn’t come easy it takes time to accept all the crap we deal with we are all warriors we wish that people would understand what an invisible illness is like stay strong and you are right we need to listen to our body
Thank you for watching and for sharing your experience. I'm sorry you've suffered so much with this condition and other conditions that have come along. Practicing gratitude is so difficult but you're right that it can make a big difference.
Thank you for this. Going through a flare right now, and I feel like I'm falling face down into depression again. You explained the regular symptoms vs flare ups very well. I think I can count the completely pain free days in my life on both hands, and I'm mostly used to the constant pain. What really gets me is the fatigue and the brain fog. Got an Adhd diagnosis recently, and anecdotally (not sure if there are studies), they are often comorbid. I found that adhd meds helped with the overall fibro somewhat, especially in the beginning. Overall I feel the hormonal dysregulation of dopamine, serontonine, melatonin and norepinephrine might be a good place to start when looking for relief.
I hope your flare passes soon and you get some relief. Thanks for watching and sharing your experience. I suspect I have ADHD and have an appointment scheduled soon to get tested. I've started seeing a few people talking about the connection between ADHD and fibro and find that really interestinig.
On lovely, what a perfect description of life with Fibromyalgia! I have it as a secondary condition to degenerative disc disease and mixed connective tissue disease/RA/OA. I've had it 34 years and have actually been ready to jump out of my bedroom window! The anxiety and depression is awful and the guilt that you feel about having something wrong with you all the time, and moaning! As I've been told many times by family rtf and docs 'it's not your fault...you didn't ask for this!' Thank you and my thoughts are with you! Xxx
Thank you for watching and commenting Sian! I appreciate hearing your experience. The mental health aspect of dealing with fibro and other overlapping conditions is so overlooked sometimes.
@@AndreaJSeverson oh yes, absolutely! Living with any chronic condition is bound to have an impact on anyone no matter what it is. Hope you'll be OK lovely and that perhaps more answers will be on the table soon. Take care! Xx
I hear has been almost 30 years for me also, with OA etc... Yes def ready for it to end. Ugh💖🙏✨
Interesting, because I have a different experience with the fibromyalgia experience. I think to myself, if someone had this pain for 15 seconds they would scream and yell and run to the hospital and wonder how I could tolerate this every waking second. The stabbing pain I get wakes me up in the middle of the night. It's my first sensation upon waking and my last before sleeping. I think I must have it quite severely, therefore.
I’m so sorry. It definitely affects some people worse than others. I have friends with it who are constantly in high levels of pain. Thank you for watching and sharing your experience.
I've learned so much from you that I didn't even after having fibro for 25 plus years: clavicle pain, brain fog, pain settling. It is said that fibro doesn't get worse over time but for me it has, not in a catastrophic way but definitely worse. And I have the pain all the time now. Its not so much a flare anymore. I worked till I was 64 and just couldn't do it any more. Good video.
Oh gosh, that's such a long time to have it. Thank you for watching and sharing your experience. :)
Newly Diagnosed here. Happy to have found you!
Welcome! I've done several videos and will do more in the future. Glad to have you here! :)
Oh my gosh, that’s so true to be that smart and struggle daily and memory forgetting things when you’re sick!!! I’d be in the bathroom and realized left the groceries in the car!!! it’s so exhausting battling the stuff never ends. It’s always something new Arash, a pain, blurry eyes, exhaustion, memory issues, and the list goes on.
The brain fog and memory issues are definitely a whole other level of frustrating. Thanks for watching Anitra!
I haven't kept track of fibromyalgia. I just try to get through every day. I really should keep a journal.
Journals or symptom tracker apps can be really helpful, just to see if you can recognize patterns. But sometimes it's just too much for people to keep track of. Thanks for watching!
You summed it Al” up so well.
Thanks for watching!
Dose anyone ever have times were you feel very weak and are un able to stand for a long period of time
Yep. That happens to me. Thankfully not very often but it does happen, usually if I've had a really exhausting week.
@@AndreaJSeverson thank u for getting back to me! I been dealing with it off and on for a couple weeks now it’s a bummer !
My fatigue has been really bad the last several weeks, it's definitely a bummer. I've had a few days as you describe where I can't stand for long. The other day I couldn't even manage a slow walk around my neighborhood. It will get better but it's hard in the meantime.
Yes & now its become a daily thing for me after years of fibromyalgia & RA. Unsure of what to do about it , its problematic showering & standing at the sink those sorts of things have become a real struggle. I have got myself a treadmill & Im hoping that it will help me get past that
Yes
In tears 😭 seriously. This is my whole life in a nut shell... diagnosed Fibromyalgia.....
I'm sorry you struggle with this too. Thank you for watching!
I don't know what is worse - having these flares (mine is pretty much a regular occurrence now) or having a family that thinks you are crazy or just simply making things up. I sometimes feel suicidal! Seriously! I don't want to live like this. This isn't the kind of life I envisioned for myself! What could be more debilitating than having mind fog all the time and nobody believes you because you've always been the best there is at whatever you do. I had wanted to sit down and write a novel or anything that can help others learn. The good thing I found out about myself is willing to "rise above" the pain and convert it into something beautiful like a painting. Which I did! I couldn't believe I have it in me. I'm on overdrive now in my painting because I don't want to wake up one day feeling I'm completely paralyzed to do anything or worse, just so out of it I'd wish I were dead! It's so debilitating. Thank you for sharing your story. I thought I was just making things up! Until I watched this!
I'm so sorry you're struggling. You're definitely not making things up and you are not alone, as the other comments on this video can show you. It's a very challenging condition, made worse by its invisibility. I love that painting has been helpful, that's how I feel about writing. :) Thanks for watching and sharing your experience!
I think my aunt thinks I am making my flares up. I feel like saying I really am not. Sorry you are struggling too.
This video popped up whilst watching some things on fibro. Explains it so well so will save to show to family and friends as trying to get them to understand ia difficult, esp when i can't string a swntence together.
I'm currently in a flare after flu and lots of stress at work. Thank you for sharing
Ugh, getting the flu, or even a cold, when you have fibro is no fun. Especially when you add work stress on top of it all. Hope this flare passes soon for you.
@@AndreaJSeverson Thank you!
Thank you so much I can really understand how you're feeling because I go through mega mega flare-ups as well as fibromyalgia have other issues and the fact that I'm 75 years old is really really debilitating. Take care
I'm so sorry you struggle with this. Thank you for watching Florence.
Hi Andrea,I just wanted to thank you for taking the time,in your latest vlog about the symptoms of Fibromyalgia, I was diagnosed 7 months ago,the pain has gradually got worse over these last 3 months especially in my Knees, and countless headaches,and brain fog,the pain can be severe sometimes, but I know it is better to let it be rather than pushing through it,like yourself I sometimes have to spend a full day or even several days where I am in bed,but once again thank you Andrea, Take Care of yourself yours Sincerely David Jamieson
Thank you so much for sharing your experience David. I totally relate to what you are saying. Wishing you some peace and rest. :)
Oh, my word I have been trying to figure out what was up with my back itching. Sometimes it can be multiple times a day to once a week. It is so intense and almost painful. Wow
The random symptoms, like really painful, intense itching, can be so annoying. Thank you for watching!
Truly does feel reassuring when you hear someone else experience your pain
It's been amazing to read everyone's comments on this video. It really is reassuring knowing we're not alone. Thank you for watching.
Does anyone else get the extreme crushing pain on both sides of rib cage! This happens at times standing by sink with dishes,chopping vegetables etc. ,It feels like someone is crushing my ribs with their hands!
I get pain in my mid back/rib cage area some times, if I’ve been sitting wrong. For me it seems more structural than regular fibro pain and seeing a physical therapist regularly has helped with that. I also get debilitating pain in my lower back if I’m standing at the kitchen counter washing dishes or chopping vegetables for too long.
Yes! I lay a heating pad on my ribs. Only thing that helps me.
I totally have that I am facing that after covid and I also do feel that whenever I am eating something heavy
currently in a wicked bad flare and i immediately started crying when u said depression bc i am lower than low w the depression. the pain has been awful,everywhere as well as the GI issues im 42 but feel like im 92. i dont feel so alone having a comunity here so thank u for sharing ok now im balling bc what u said around 10:25 people do not understand. also im forever being told i take forever for anything and that im so slow. and the fog is soo frustrating. i know the word but cannot think of it. it wont come out. i am saying yes after all your descriptions! it takes me hours to wake and im costantly exhausted. sleep is like NONE and i have insomnia so bad then want to sleep all day. i have 3 young children (single mom) and they dont understand of course
Oh my gosh, I just want to give you a hug. You are definitely not alone, but I understand the feeling. All we can do is our best, and if people can't understand, or are unwilling to understand, that's on them. I'm 40, but I relate to feeling 92. Some days are much harder than others. Thank you for watching and for sharing your experience.
You know cbd does help with pain fibro for me.. its hereditary in my family.. I also have 3 autoimmune diseases and depression/ anxiety.. so pain is my middle name lol. The feeling liek I have asunburn is aweful as well as the fatigue. I love that you talk about this and it feels like Im not alone.. thank you fellow warrior!!💜💜💜
I'm going to have to try cbd and see how it helps me. Thanks for watching! You are definitley not alone.
CBD definitely helps. Using it for the past 8 years. With. Vit D. Vit B. Magnesium. Celebrex and cortisone when necessary. Plus tramadol for pain. Cbd helped me get rid of brain fog and gives a good nights sleep. Blessings to all
Hi - this is exactly the video I needed to see today. I always feel like I can’t properly articulate how it feels to be in a flare, but you describe it perfectly. I was also diagnosed in 2016 but have really struggled to accept this and fighting ourselves is certainly not the answer. I’m so glad to have found this video today and it has given me a lot to think about. Thank you and I hope you are currently in a good space and that your symptoms are under control ❤️
Thank you for this comment, I appreciate your kind words so much. I’m glad the video was helpful and what you needed to see. ❤️