Food has really become a chore. I have developed gluten, dairy and egg intolerances in my mid 20s. If i eat any of the above my symptoms get so bad i cant get out of a chair. But really anything I eat gives me the same symptoms just less intense. Extreme Fatigue, brain fog, dizziness, anxiety, skin crawling and muscle pains ( mainly in my back and down my legs) anybody relate to this?

I'm 20F and currently waiting to find out whether or not I have fibro. Went into hospital to see a specialist regarding a cyst in my hip a few months ago, and now 3 months later I'm waiting on results from tests for fibromyalgia, CFS, and hEDS.

Although I can't speak for whether or not 3 months of waiting for a diagnosis is a long time or not, I'm struggling heavily with what I'm supposed to do whilst I wait.

I've been given no advice as to what I can do in the meantime to minimise the symptoms that I have, I've been signed off of work sick for the past 2 and a half months - and now I'm going back to work tomorrow with no indication as to whether or not I should realistically even be going back.

The last time I had physiotherapy (for a hip injury), my physiotherapist had me do some exercises, went to speak to his colleague, and then told me that he's "referring me to advanced physiotherapy". What does that even mean? Why are they doing that? There was no explanation as to why and it's making me even more anxious.

What I have found however during this weird limbo, is that awaiting diagnosis is incredibly lonely and alienating. It's like you're not officially sick enough to be treated like you're sick, so your symptoms are treated like a complete burden to everyone around you.

Sorry for the long rant 😅, I just feel extremely isolated and I'm not sure where to go or what to do whilst stuck in this pre-diagnosis period.

Hi All,

Has anyone used contrast baths to help with fibro? Has anyone used ice baths, jacuzzis or both to help with fibro? I have just started looking into this and see how it can benefit fibro sufferers on both ends, but I can see the disadvantages to it as well.

Thanks for the input!

for the last few weeks I've been unable to sleep basically until exhaustion takes me out, so far my high score is 26 hours without sleep and I STILL needed benadryl to knock my ass out. I also have tremendous difficulty waking up to the point that I sleep through alarms and can't reliably get up even when I need to. I know these problems are cyclical, but the reason I can't sleep is because of pain and I can't exactly exercise to wear myself out because I'm also dealing with undiagnosed/untreated POTS (waiting for my cardio appointment in late June...been waiting since january) (my PT is convinced I have some form of dysautonomia even if it isn't POTS, but poor man's TTT says POTS)

I'm incredibly lucky to not have to work right now, but also...I like being awake when my family is, and passing out from exhaustion at five am and sleeping straight through to 3pm with NO control over it is frustrating. I just messaged my doctor about trying out something new to treat the pain...ugh.

Doing some international travel soon, during a flare up. Using a heating pad at home really helps me ease pain, fatigue, and circulation issues. I get very cold, very easily, and when I do, my body can easily just shut down, and pain can just take over completely. I won't have access to a bathtub on this trip either, which would be my normal go-to to warm my muscles and body.

Tell me about your experience with travel heating pads or regular small lightweight heating pads. I want to be able to create some warm comfort for myself while traveling.

Hello. I was just diagnosed 2 weeks ago and stated cymbalta and have a couple of questions. I also have Ehlers Danlos Syndrome and POTS so I have had pain all my life. First off the medication stopped my pain noises almost from day one. So much that I was even questioning if that is possible so quickly and don’t want to believe this pill did all that. But I am so tired my eye balls roll back in my head and I just feel blah. I don’t want to talk to my family and I talk all the time. I just want to sit in a corner and watch movies which I never have the bandwidth in my brain to watch a movie. Does this go away?

I’m going on vacation next week and I thought I had enough time to adjust before and that doesn’t seem to be happening so I’m thinking of getting off of it and restarting after vacation because I can’t be this zombie. Is this stupid?

Pretty much what the title says. All the muscles in my back, particularly my upper back, shoulders and neck are royally screwed. They are hard has rocks and nothing I’ve tried helps. Muscle relaxers don’t help, acupuncture didn’t help. So I’m thinking of maybe trying massage. But it’s not covered by healthcare so I would have to pay for it out of pocket. Where I live the most popular massages are Thai massages and there are places everywhere. But I understand they are really deep tissue and I’m not sure I can handle that with my pain levels. I’m wondering what types of massage people have tried and what helped. Thanks in advance.

Went for what seems like a full body workout, then when I reached exhaustion, I did another workout. My back muscles and traps feel like they've taken a bat. My hip joints pulse with pain. My hands shake. I'd say it's like I got completely run over by a truck.

What I actually did was go for a short nature walk. Walked slow, took my time, enjoyed nature and the fresh air. Thought I was taking it easy, but the pain hit me out of nowhere. Currently in bed just wondering why?

I'm not sad per se, or depressed. I actually feel happy. Like, it stinks that this is the outcome and knowing I'll never be who I was, athletic and fit, it really is a downer. But you know what, I'm don't beating myself up for something I can't control. I'm gonna walk if I want to walk, until I can't walk or until my legs give out. I'm so sick of being sick and letting this condition take over my life. I'm m tired of cancelling plans, or changing them or having my friends try to accommodate our outings because of this.

I'm going to enjoy my life. Continue loving those around me. Enjoy simple things, like walks. I'm not normal, but I'm also not done. I've a whole life ahead of me and I'll make sure when it's my time to go, I go with a smile.

I'm going to live my life like it should be lived.

Was on 75mg x2/day for roughly 7m. Kept pain dulled but didn’t want to increase dose due to potential side effects.

Started having panic like episodes and rapid heart rate. I started tapering down to 75mg at night (1 wk) and now doing every other night. My heart rate seems to only increase when I stand now. I’m obviously getting in with a cardiologist but curious in thoughts of tapering down from 75mg since I was never at a high dose. My anxiety has come down tremendously!! Aside from the HR I feel like everything else has been bearable.

Was also on 10mg Nortriptyline but stopped that 2weeks ago for same symptoms. Decided to taper Lyrica when the symptoms didn’t resolve.

Pain seems to be holding while taper but the migraines are starting to come back. Slowly thankfully so I have time to figure out a game plan.

Thanks for any input.

I’m having one of those days where I feel like I am less than in every way possible. There are so many things I want to do but today just isn’t my day. Last weekend wasn’t either, and the weekend before that…. I hate flares. I feel lucky that I am at least able to do my job which I love so much (teacher) but it takes everything out of me during flares and I become completely useless at home.

I recently got diagnosed with fibromyalgia after a horrible car crash last year that left me hospitalized for three weeks undergoing 15 or so surgeries. My fibromyalgia symptoms did not start appearing as harshly until a few months after my accident. No one in my day-to-day life has an understanding of what this is like, and I feel very alone in it, dealing with PTSD, a new physical disability, and now officially, fibromyalgia.

Does anyone else happen to have the following symptoms or something similar? I’m just really tired of feeling so alone and I feel like I could break down right now.

• I feel fuzzy in my chest and it goes up my neck to my head. I almost feel like I take a drowsy allergy pill every single day which is the best way I can describe it. The fuzziness also makes me feel itchy (on the inside, not on my skin).
• Chronic fatigue, never feeling like I get enough sleep
• Feeling like I’m being weighed down, like gravity makes it hard for me to walk or stand without feeling extra aware of how it feels.
• Chronic headaches
• Skin itchiness and rashes
• Tenderness to the touch
• Random aches & pains that come and go
• Aching muscles/body CONSTANTLY. For a period of time, I literally could not put weight on my legs.
• Heat and light intolerance

All of my symptoms leave me feeling so scared and helpless, especially after my accident. It has made me have horrible health anxiety where it’s hard to accept that it might just be fibromyalgia because no one in my real life has the same symptoms or experience.

The one that scares me, the most is the chest and head fuzziness. I almost feel drunk or drugged, even when I’m not. I know tenderness, headaches, and aches are widely normal. Just wanting to feel less alone, I guess

I suspect for me it started with Lyme disease being the initial trigger followed by emotional and physical traumas.

Soo IF I was Dx’d with fibro 18 years ago ( went in for joint pain) and dr said fibro can it not hurt EVER AGAIN until 18 years later ??? My joints… every joint started hurting g abouut months ago . Went to a jackazz of a rheum. He did no test just declared it fibro .. I am in CONSTANT AGONY !!! not just joints now .muscles too . Headaches ( never was one to have those ) my feet are numb and either hot or freezing cold . No med for this! Also I have been dx’d with OA. Is all this possible ?

If so, how many days a week and for how long did it help?

She and her husband have been my best friends for many years. I want to help her and need guidance. What products have helped you in your pain management? (Any links to Amazon are appreciated). What would you have liked a friend to do for you? What can we do to better understand? Any guidance is helpful! I wish to be a good support system for her as she has been to me.

Apologize for the rant but wanted to get some opinions based on what you guys feel-

I’m reading through many posts on this sub trying to make sense out of what’s happened to me for last 4 years

First I should mention I don’t have full body pains and the pains (burning feeling) so far are only neck and up

I developed symptoms that seem to be concentrated in back of the head. The sensation at first was co fusing because I thought I just wasn’t sleeping well because I felt wired or just strangely unprepared and I rested. Then the symptoms in the back of my head progressed and caused ear cracking and pressure as well as a burning or extremely heavy feeling in the back which of the intensity increased enough it because a full on headache which felt like my head was in flames.

I’ve traveled to top neurologists allover the US. The doctors are unsure. Some say chronic migraine, some chronic complex headache, the last one suggested it had maybe a fibro element to it and localized in head area- he described how chronic stress can possibly cause nerves there to by hypersensitive leading to something like this

The symptoms for me are mostly in my head meaning I get extreme heaviness or very deep burning deep in back of head which always comes with extreme fatigue.

I may or may not have auras where I loose hearing for a millisecond and it goes in and out but other times I get nothing I would describe as a typical migraine

On some occasions mine will feel much better by evening and if I were to say wake up at 3AM I would feel perfectly normal. When 5-8AM hits and I get out of bed however it hits the hardest. And am never sure if it’s the awakening or the getting up or both that make it come on so strong in the morning

Out of dozens of medications none seem to have worked at modulating this aside from weed which if the intensity is high enough doesn’t work either. I’m on my second round of Botox and am seeing if this will have an impact

My question is do any of you guys experience this? What does your head fatigue feel like? Does it go away ever during the day or night?

• "Picking you up around 10ish"
• "We'll bring some day quill"
• "We'll pick up some cans of monster for you."
• "Joke. Always looking for an excuse."
• "Enjoy your isolation misery." (Better than being in misery in a car with dogs that I'm allergic to and a restaurant.)
• "I'm sick too. Sick of your crap."

Well, now I hurt on the inside, the outside, and the inside again.

Just wanted to share with people who would get this achievement. My pain is 3/10 right now but I think I'll be able to have a nice time. You guys really helped me on the other day that I was struggling, so thanks. Gentle hugs 🫂

https://statcarewalkin.com/info/ozempic-for-fibromyalgia.html

Does anyone else deal with an ear ache when going through a flare???? This is the second time this has happened recently.

Whenever I wake up in the morning I feel mild eye/ eyebrow heaviness then if I concentrate too much when talking to someone or when I'm in some closed large mild lighted area I feel like swaying/dizzy along with severe headache, eyes pain and anxiety. Though it mimics Binacular Vision Sundrome, I need to know if this is something different. FYI I have been suffering from Health anxiety since lockdown.

I'm 43 male I've had reactive arthritis, and ankylosing spondilytis for almost 20 years after I found out I'm hla-b27+. Last year around wild fire smoke season I got exposed to heavy smoke that made my muscles and bones hurt, but eventually went away. Now a few days ago I was doing some automotive work trying to seal a bead of a tire on a rim. I was using silicone spray to lube the tire. I ended up breathing a bit of this silicone spray airing up the tire and got a slight 2 minute headache. The next day all my leg and arm muscle and bone hurt extreme bad. This kinda feels like a immune response, but no lasting damage after the pain moves away. Usually when I have a arthritis flareup immune attack it takes several weeks for my joints to repair. Does this sound like fibromyalgia from chemical exposure or is this all in my head?

Finnally got slow releasing meds and for the first time in a year my pains about 50 percent better and I was able to do some walking without being in complete agony. Had some severe neck and shoulder pain as usual but my legs and lower back are so much better. Ive also had a higher dose of amitriptyline and am allowed paracetomol in between but have not needed it. My part time job will be the test to see how well the meds hold up but so far 8 hours on I am still feeling the benefits. Very glad my gp kindly agreed to them.

Have any of you been able to pinpoint what causes a flare up for you?

Hi, I’ve been diagnosed with small fibre neuropathy by my neurologist but he also mentioned fibromyalgia- I don’t know why but I feel I don’t fully fit either diagnosis but also leaving more towards fibromyalgia? What is a definite test for fibromyalgia? And has anyone ever been misdiagnosed with Neuropathy instead?

Anybody here ever try Provigil for the fatigue? I used adderall for years but I can't take the comedown anymore.

I try to avoid drinking too much or drinking without hydrating the whole time. But accidents happen 🤷‍♂️ When I'm hungover it's like hell on my body. Anyone have anything specific they do for hangovers? I have a hard time finding things to help bc I have a lot of dietary issues that force me to eat vegan

Always in horrible pain so I try a very gentle myofascial release massage...massage triggers flare...flaring for a week now... What is the damn point?

This happens with absolutely anything I do to try to help myself feel better. And I've tried absolutely everything medical or holistic; you name it. It feels utterly useless.

Does this happen to everyone?

I don’t have a fibromyalgia diagnosis but I have had widespread pain for years and I am going to see a rheumatologist in a few months. Ever since the onset of my pain, I feel much worse when I get a cold. I never get a normal no big deal head cold anymore. I have full body aches, pain, weakness and extreme fatigue. I am 43. My family will get a case of sniffles and I’m unable to function for days. Is this part of fibromyalgia? Worth mentioning to the rheumatologist?

I recently had an mri of my brain to rule out Ms. I had a clean emg and nerve conduction study. I have had bilateral leg tightness, nerve pain(burning) muscle knots daily for the last 6 months. After a month the pain gravitated to my hips and groin kind of like a tight feeling. If I rotated my hips it felt like it pulled down both my legs. I will get super stiff (muscle) patches of skin around the inner part of both knees. They generally occur at the same time. My knees feel like my biggest problem. They burn and just feel unstable. I’ve had all autoimmune work completed as well everything came back normal. From time to time I have horrible pains in my shins some days it feels splintering some days I have no shin pain. My legs just feel weak and tight. My upper thighs and hamstrings he have presented tightness as well. This is both bilateral and always presenting symptoms similarly to each other. Magnesium helps this symptoms but with this I’m finding I’m getting excessive gas (burping). Im also experiencing not sure if it’s muscle or nerve fluctuations all over my body. Could this be fibro has anyone else experienced these symptoms?