Just came from the rheumatologist where I was told the medications I'm on seem to be covering all the bases and I need to just get some more excercise.

Dude, I have been suffering for TWENTY YEARS. I guess I thought by 2026 there would be some breakthroughs or some shit. But I guess not. My whole life was upended, I hate it and I grieve for the life I never got to have. I guess you have to have a pain level of 10 for them to do anything.

I hate the future.

Thank you, that is all.

Reminded of this today. Shortly after I was diagnosed in the mid-1990s, before we figured out effective pain management, I was in enough pain for my eyes to glaze over.

You may have read this phrase. In real life, it's like, "Dude! Your eyes are glazed! You look totally baked!"

I didn't realize I looked high when I ordered pizza. It took a disdainful stare from the delivery guy for me to glance into a mirror. Yup, eyes glazed with pain equals looks totally baked. No weed. No other drugs. Just pain.

took a weed pill and it did wonders for relaxing my muscles but now my whole body feels like cooked pasta and im so sore. seems like the constant muscle tension (aka the reason i toon the weed pill) relieves pain in the short term but also is the cause of a lot of the pain??

anyone else experience this?

Hi everyone!

I was recently diagnosed with fibromyalgia, so I'm still learning about everything that comes with it.

I had one question for those who have been living with it for a while: do your symptoms get worse when the weather is cold? I've noticed that colder temperatures seem to make my pain and other symptoms flare up, and I'm wondering if that's a common experience.

I'd really appreciate hearing about your experiences. Thanks!

Hi everyone!! I’m an ambulatory wheelchair user and i have Degenrative Disc Disease, fibromyalgia, POTS, IBS, (suspected) ME/CFS, and a 3 level spinal fusion. I’m 20. I just got my chair in May(yay!) I’m wondering what accommodations to ask for in college? I really want to not forget anything going into this semester since i’m already nervous to take my chair on campus. I do live at home so I’m not super stressed about housing accommodations. If anyone has any accommodations to recommend or even products to recommend to help me succeed in college I would be so so grateful!! Have a great day!

Hi all,

I am currently trying to recover from being sick for 3 weeks (sinus infection) and then having a very busy week and a half afterwards. Let me know what your best rest and restorative “activities” are! I’m currently just watching some series on the couch and falling asleep for hours on end. I was thinking of trying to do some yin yoga today but I also want some other tips. Maybe magnesium foot bath? Some type of (easily accessible) massage?

Thanks in advance! 🫶🏼

So I saw a rheumatologist a few weeks ago to see if I could get a diagnosis. She was not ready yet to diagnose with fibro but she gave me a referral for a physical therapy evaluation. She also gave me a prescription for 5 mg of generic Flexeril to help me sleep.

I only took the muscle relaxer three times because each time I was f***** up the entire next day. Felt like total s***. Not worth the expense.

Yesterday went to the physical therapy evaluation. The guy was nice and listened. Then he had me do some stretches to sort of see what the limits of my mobility were. Nothing seemed to overexert me at the time. However last night my entire body was on fire. Finally was able to get to sleep and feel sort of back to my normal this morning which is pain in my upper arms and inability to lift my arms beyond horizontal without pain.

I start aquatic therapy on Monday. I'm more skeptical today than I was yesterday because of how bad the pain was last night. I just need to hold my ground and not let them push me beyond what I'm comfortable with. The whole thing might be a fool's errand.

For the last couple of months I’ve been experiencing a new type of pain. In the early morning hours, before I’ve really woken up, in those moments before full consciousness hits and the regular pain for the day sets in, the few moments of half asleep bliss where there’s no or very little pain - out of no where a full body deep ache muscular pain, that’s sharp in experience sets in, as if it’s just consumed my whole body and the aches are so severe it makes me want to cry. The urge to move through the pain and writhe sets in, but then as it wakes me fully and I continue to move for awhile, the pain will disappear after 15-30 minutes. Then I go back to my regularly scheduled programming. I can only assume that this has a psychological origin. Anyone else experienced anything like this?

Has anyone noticed that the Facebook fibromyalgia “support groups” are filled with a bunch of sour people and people who still don’t take fibromyalgia seriously because wow a Fibromylagia UK group is filled with posts like women explaining how fibromyalgia doesn’t cause actual harm isn’t degenerative and using it in a way to minimise patients constantly?

I’ve never really been into Reddit but my god is the online community here so much more kind and empathetic across a lot of boards ❤️ so thanks for making me see a online space as a nice place 🫶🏻

So my mom wanted me to go to the chiropractor because she wanted to see if getting me adjusted would help with my pain and mobility. I was okay with it, but in the back of my mind I didn’t think it was really going to work. Still, I was willing to do it anyway. I mean, I’m not paying for it, so whatever.

Anyway, we go to the chiropractor and he does an X‑ray. They find out I have mild scoliosis, which I actually already knew, so that wasn’t new. He adjusted my back and basically did a whole‑body adjustment. He did my back, my hips, my knees, my ankles, my wrists, and my neck. At the moment it didn’t feel bad — like, it didn’t feel good, but it felt okay. But when it came to my balance, it was thrown off after the adjustment, and that wasn’t good.

I didn’t really flare up until the next day. I had really bad back pain, my whole right side was flaring, my knee pain was bad, and I had to come back literally today to get another adjustment, which I hated and didn’t want to do, but I had to. When I got adjusted again, I was immediately in pain as soon as he put his hands on my back. The tenderness I felt was horrible, and I was just in so much pain during that adjustment.

My balance was extremely off, my back started burning, and it felt like needles. My body was basically overstimulated — like it was on overload — and I could barely walk. We were in the store and I could barely walk. I was using my cane and it was just horrible. I still feel so bad, like I still feel the burning and needle feeling in my back. My knee is really tight.

And to be honest, I don’t think the chiropractor is for me. I don’t mind trying things, but if I can barely walk and I’m in extreme pain afterwards, I’m not going to do it. So yeah.

Ok so this is a genuine question but I may sound dumb

So I have long hair. I am v insecure so i don’t feel great about cutting it short as it is how I kind of make up for it when I don’t feel confident, I.e doing nice curls to distract from feeling ugly etc. however the scalp pain I get can be really bad. Would the scalp pain still be there if I shaved it and used wigs?

I was recently diagnosed with fibromyalgia about two months ago. On a side note, i deal with a lot of mental stuff, primarily BPD (Borderline), anxiety, and Depression I have been struggling with it since December. Im 21. Im stuck at my grandparents unable to get a job due to the pain. I was prescribed pregabalin, and it doesn't seem to do much. Im at my wits in the end. I literally can't live like this

What can I do? Im in an almost 2-year relationship with an extremely kind and patient girl. She is my main reason going forward in life currently. I want to be able to have a job and for us to get out of our situation.

Hi! My husband and I just bought our first house and I'd like to know what things you've done organization- wise or any other kitchen tips and tricks to keep from over doing it.

I've also been having some POTS symptoms lately so I am having a hard time staying on my feet for any length of time. We've decided we're going to cobble together a seated workstation out of ikea pieces, so I can sit and chop vegetables, roll out cookies or pie crust, etc.

What have you done in your kitchen to make tasks easier?

I'm a 31yo male who's been suffering from fibro for almost 3 years now and I just wanted to say TO HELL WITH FIBRO!!!

My life has been going down hill ever since the pain got chronic. Im always in pain, I never sleep properly and when I do I wake up in more pain, im always tired and irritated. I struggle with my relationships with the people I love because of the constant irritation and pain.

But I just wanted to tell you're not alone, im not giving in, im not gonna let it ruin my life, I still work and it's so fricking hard but im not gonna stop my life for this.

This disease has affected me mentally, physically and even sexually but im not gonna let it control my life.

Just wanted to let you know that you're not alone and that I feel your pain and despair.

Just wanted to rant cause I've been having this flair up for weeks now and it's too much for me and nobody can understand me except my fellow warriors who go through this everyday without anybody seeing them.

I SEE YOU!

My toe got inflammation few days ago. Visible no change at all but it hurts weirdly. I am super worried whether my toenail will be okay or not. But main concern is pain. Rest of the toes hurt too so probably the pain is aggravated due to fibromyalgia pain and sensitivity? Is that possible?

Plusss this monsoon weather. Its too humid. 60-70%. 30-40 degrees. How am i hot and cold at the same time? Lol.

So as we all get the advice to move more and exercise, I was wondering for people that have been sedentary and then done the exercise did it change the pain or fatigue, did you notice any real improvement.

Last night I got in a row with my husband and ended up angry cleaning and whilst my muscles are aching I definitely slept deeper and my pins and needles are the lowest they have been in ages. I think it is from cleaning the house in anger which broke me out in a sweat. We don't have a pay as you go gym close to me so if I were to try exercise and fit it in around my 3 year old I need to be fairly sure of results before signing up for that cost.

I also hate gyms as people judge you so harshly if you are over weight or moving much slower than your appearance suggests you should be able to. I don't want to end up as a facebook or tiktok joke.

Edit

Thank you for all thr responses. I will spend some time this evening looking for online videos that may also be fun for my toddler to do with me.

Hey guys, I’m new here (M25). My story is pretty long but to summarize I’ve been having weird symptoms for about 5-6 years now. I never saw a doctor about them until this year. For some background I have a long history of anxiety, and in 2020 I had a 3-4 month span of super high stress, anxiety, panic attacks, the whole lot. I feel like I haven’t felt the same since. It’s impossible to list all my symptoms but the main ones are the following:

Intense daily fatigue and brain fog
Non-restorative sleep no matter how many hours I get
Hypersensitivity to light
After-images and visua snow/eye floaters
Dry eyes
Facial flushing/redness especially after eating or drinking
Full body itching
Heart palpitations
Acid reflux
Off and on full body aches and pains
- stiff neck and lower back
- achy legs
Random jolts of pain everywhere
Tinnitus
ED
Tenderness under armpits
Testicle/abdominal pain
Bump on neck that has been tested and believed to be an enlarged lymph node

I will say while my symptoms are widespread, they are relatively mild compared to a lot of the posts I’ve read on here. I’m still able to live a pretty normal life, but it still does affect me daily and I feel like my quality of life could be improved.

So far I’ve had a a CT scan of my neck to check on the swollen lymph node, a scrotal ultrasound that came back negative, and physical exams done by an oncologist, ENT, and rheumatologist with nothing alarming. I just had my rheumatology appointment after months of waiting. She said nothing was too concerning to her based on my symptoms, and she tested for like 6 different autoimmune conditions. All the results came back negative and she basically said “I don’t think you have an autoimmune disease. Some of your symptoms are likely due to fibromyalgia. No follow up needed please refer to your PCP.” That was it. Now I’m confused where to go from here. Do I need to push for a formal diagnosis? Is the PCP qualified to treat fibro? Do you think I need any further testing? Any help someone could give me would be greatly appreciated. This condition confuses me…

Hey guys I'm working with my doctor but all my labs coming back normal I've had fibromyalgia for a decade the pain is killing me but I keep moving forward (not really I am stuck)but recently things have been weird I started to shiver or vibrate. It feels a lot like a panic attack but there was no issue with any thoughts at that moment plus my pulse was low like 48. I was shaking, I felt like I was poisoned, very nauseous first time I went to the ER they treated it like a panic attack, second time I was more clear and they just reduced my tachycardia medicine. My Dr is clueless. I know it's a extreme long shot but have any of you heard anything like this. Thank you for listening

*updated to add, I had an appointment with my doctor today and she prescribed some nerve pain blockers 😭

In a flare so bad rn that I can't lie down cause that makes it worse and I absolutely hate that a&e can do nothing for me 😭

I just want the pain to stop

I was talking with my main doctor, and they are saying I qualify to take a GLP-1 like Ozempic. I'm curious if it's worth taking with fibro, or if I should expect a major crash while taking it?

Thanks for any insight you can provide. For some history I took Phentermine for 90 days and it helped with my weight-loss and my fatigue was less intense.

I'm also on 50mg Noritriptyline and 100mg Gabapentin.

I will wake up, and all of a sudden I will feel a horrifying sensation of my nervous system going down and it’s really scary, as if it’s about to turn off and this initially brings about anxiety, panic and I can work myself up into a state, but it’s happened quite a bit now over the years, maybe once every 9 months where I kind sort of sit in it now.

It’s like I can finally feel again, because my fibromyalgia is always constantly on and I feel pain, tension and discomfort when this occurs it’s almost foreign and alarming.

As if I’m so used to my flight or fight response being ON that when it down regulates it’s not normal so I panic and it’s a rather big jump down.

What’s happened in the past when it occurs is I panic and get into a situation where I struggle to breath feel light headed and I’ve even been to the ER over it once or twice thinking I’m going to die.

but it occurred this morning and I just kept telling myself, I’m okay, it hasn’t killed me before, if it does, it does relax and I just let it play out.

But what is weird is, all of a sudden has this occurs, I can feel sensations like I used to feel prior to fibromyalgia, I can all of a sudden smell better, I can also stretch again, does anyone else notice that with fibromyalgia? that you can never stretch any part of your body. When the constant pain is there, try stretching, and you don’t get that fufillment anymore, I think it’s because we’re so unconsciously tense and braced for pain, and our brains are sending so many constant signals of pain that our brains just don’t have room for it when we are like we are.

But as this frightening discomfort passes, it’s also freeing, I can stretch my hands, my finger joints, my legs, every part of my body can feel like it can stretch and it’s so nice, of course as I’m doing it I still feel this long forgotten relaxation as discomfort and my nervous system and my brain are scanning for threats but I just tell myself “I am safe.” and this time I managed to not work myself up into thinking I’m about to die.

I’m in bed right now just relaxing, and trying to stay calm, but I’m just documenting this so I remember but also asking if anyone else experiences this?

It’s so rare, so so rare but I often think it’s my fibromyalgia almost wanting to go into remission and I’ve had fibromyalgia for 6 years now.

I’m 34 but when I was younger at 20 my first major break up which broke my young innocent soul lol send me into like pain for 3 months and then something like this occurred and I was back to normal after it.

It seems stressful events kick me into this, as the last one was when I was 28 and I’ve been this way since in chronic pain everyday.

But every so often, I get a weird dripping sensation which I can only assume is my nervous system coming out of its heightened more sensitive fight or flight and it tries to go back to baseline and fails.

Well, I decided to not freak out and whilst it’s extremely uncomfortable emotionally and sensation wise, at the same time, I feel relaxed on the surface of my skin where usually pain is, I can stretch everything literally everything and it’s close to orgasmic because I never feel that, you can image years apart of feeling this all of a sudden is quite nice.

But I can also feel my nervous system being aware of the unusual discomfort and sensations and I usually work myself up to a state, it’s like my nervous system has a mind of its own and I just observe it.

Anyone else relate or ever get that? I feel like it’s a catch 22, I almost am entering remission, no pain, ability to feel like I used to with tactile touch and feel, but at the same time, it’s so foreign and unusual and I’m so used to pain, I almost feel like being in pain is my baseline and that’s more familiar to my bodily sensation homeostasis that my nervous system wants to get back to that rather than be pain free and feel sensations without pain.

What also occurs though is almost like too much feeling, for me when I’m in pain just feel large clumps of pain in my hands, my arms, my face and back, not really my legs.

But when this returns, I feel almost like too much sensation all at once it’s not gradual I feel like the tiniest sensations around my lungs, like costocondritus which usually freaks me out, but today I remained calm and I’m in a weird middle ground.

It almost feels good because I’m pain free, but at the same time I’m like too aware all of a sudden of new pain free sensations.

I really hope I’m not alone here.

needless to say this is gonna be depressing.

I just like. I've been in chronic pain since i was at least 10 and fibro probably started around then too. but. These days especially recently. I just i have been trying my best to keep afloat but. ive never worked a day in my life, i wanted to do a course this year im 22 and the first thing id be doing since i was 17, I've been having horrible knee pains. Rhem was late, had to push it back to next year, i was really looking forward to it. then rhem fucking feels my knees looks at the pretty old xray s then says its the fibro. no additional checks. and she tells me to go off the codine. go to my gp. thinking Shed understand the i need that codine nope! she takes me off it. now here i am with no family, a couple friends, my fibromyalgia worsening to the worst its ever been while my pregabalin has stopped working. i am so fucking lost in life i dont have shit. i dont know what my future is gonna be. im on my wits end. i cant be doing this fot the rest of my life. im in an endless cycle of tourture. dreams always crushed. doomed to disability payments where i barely Meet my cost of living. is this life worth living? imo no. i am still here entirely for my friends at this point. im not enjoying life haven't been for year's, no matter how much i self advercate for myself at every turn. im still ignored. still in horrible pain. i always end up at square -5 next year. i just want to do my passions. and not stress about money.

does anyone else feel this? also will say i wont kill myself i have a counsller and help around me. i have supports. but definitely hate this condition and being a minority of a minority of a minority (fibro, trans/agender, aroace). also i will say im in nz.

46M here diagnosed with Fibromyalgia about 5 years ago. Needless to say the last 5 years have been absolutely crushing for me. I lost my career I had worked so hard for. Everything has turned upside down. This is what is weird....

Up until this month I've been about a 6/10 (10 being the most) baseline for anxiety and depression. Physical pain I usually hover around 7/10, depending on what I am doing. This month specifically has been the biggest struggle of my 'journey' with Fibro/chronic pain. Physically 9/10, mentally 9/10.

I am so ANGRY. Like A N G R Y. I can't work more than 10 hours a week because of my flare ups and pain, but nobody is hiring for 10 hours a week. Not to mention it is pretty 'pointless' working only 10 hours a week.

This month the thought that I will NEVER work full time again (until there is a cure) is LITERALLY driving me INSANE. This is the thing.....My mind has ALWAYS been ambitious, driven, motivated and wants to work. But my body will not let me. So there is a constant disconnect with my mind and body. It is literally like being a prisoner to your own body. Also, I'll never be able to travel. I recently went to Colorado for four days and on Sunday I was bed ridden and my body just collapsed and I slept for 6 hours with family and extended family at the house we were staying at (my brother's).

I got SO MUCH SHIT for having a 'bed day'. People think I was ignoring them, not wanting to be around them, and the best one, "Maybe you shouldn't have come" and "maybe next time you shouldn't come if your body won't let you". Those comments absolutely CRUSHED me to the core.

I'm so depressed and angry I don't even know how to articulate it. I'm so PISSED at this disease. The thought of never being able to work full time again and the thought of never traveling again makes me want to ya know........exit. Being motivated to work and make money and not be disabled in my mind and not being physically able IS DRIVING ME INSANE.

Anyway, just needed to get this out.

Please help anyone has similar symptoms, I don't respond to antihistamines or steroids or dmard , doctor said it is fibromyalgia, but I don't think so....

Because my symptoms fluctuates..and I don't have constant deep ache only when symptoms peak I get joints pain at various parts of my body...

Please help

Also I now even react to vitamins, supplements, anything....even drugs fillers fills like MCAS but I don't have histamine like surge....

How does your body wake up one day and decide to slowly take away your autonomy? Your control over your daily decisions? Your actions? Your life?

How does a healthy 25 year old slowly have difficulty to lift weights, to run, to walk, to go up stairs, to bend down?

How does no one care to investigate why youve completely lost yourself if the answer isnt staring back at them in their textbooks? Do they think throwing ambiguous medication at me solves my symptoms? Do they realize that im fed up of feeling new symptoms to fix my old ones?

I began to get angry and frustrated with myself. Fight againsty my own body everyday, convince myself "mind over matter" mattered in this context. That like every other difficult thing thats happened to me in my life, i can face it head on with a strong mindset to just keep going. You know what forcing yourself to keep going does in a body like mine? Mind numbing fatigue, soul crushing pain, intolerance to basic physical tasks, and a whole lot of questions that have yet to be answered.

Its going to be a year and a half since my symptoms started. I started in denial, thinking to myself "how much longer could this possibly last". Repeatedly pushing my body against its new limits with the mindset that itll get over itself, itll stop overreactiing. Then came frustration, my body was capable of weight lifting 5 times a week, of playing sports, of running, of going up stairs, of bending down and standing without getting dizzy, of getting up in the morning without invisible weights attached to my shoulders and feet. What the fuck happened that i just CANT do those things anymore? What the fuck am i supposed to do if the MAIN fucking way i coped with all the bullshit ive been through is through working out, and now im not capable of doing so because it makes me worse? What kind of sick joke is that?

I knew when i finally gave up working out, that i lost a part of myself. I remember the day i decided. How awful i felt during and post workout, and how i started to face the reality that my body is not capable of what used to make me feel good anymore. Thats when i started to grieve my old self. I now look at people on tv or in real life and think to myself "wow i miss when i was able to do that". Will i ever get to a point again where weight lifting not only makes me feel strong, but it relieves me of my anxieties and frustrations? It is no longer a form of escapism and i mourn this more often than id like to admit, even months later.

In the past few months i found myself surrendering to my body, "listening" to it. Even though i hate what its saying with every fiber of my being. I feel like a failure. I feel like im in this limbo period between being symptomatic and finding a diagnosis, and every single thing in my life is tainted by it. As happy as things can get, my body is always reminding me of its weakness, its inability to keep up with the most simple things that most peope dont think twice about executing. I find myself calculating my days strategically to accomodate my impending fatigue, or pain, knowing theres a high chance that ill be feeling it, given its been my reality for so long now.

How much longer? How much longer will i feel this way? How much longer until someone gives me a name for one of the most difficult things ive ever been through? How much longer till i have a treatment plan? Till i feel happy? Till i no longer find it difficult to be alive? I have this gut feeling ill feel like this the rest of my life. Ive always had a gut feeling that the destiny of my life is to attract unfortunate events. My life has been a series of them. I thought i was strong, and most days i am despite this new body of mine. But my daily experiences slowly chip at my strength everyday, until it crumbles and im left with this spiral of despair and hopelessness. It builds back up again, and i wake up accepting this new body, life, situation. Until the cycle repeats itself, and im right back where i started. I miss my old body. I miss my old life. I miss being able to have my body keep up with my mind. Im only 26, and im tired. Im tired of feeling like life is difficult, im tired of being strong, im tired of going through things. There always something new that comes in to rock my world and turn it upside down. I get over it, i become stronger because of it. I think its over, that its time to be happy. And yet another thing comes bulldozing into my life. Is this what life is? Is this what they mean when they say life is difficult? THIS? Constantly making an active effort to be happy despite all the shit you have to ensure? its exhausting. This entire situation is exhausting. I just want the old me back. I mourn her so often. I envy people who can move and live so freely. I just want to be given a break, a breath, a reprief. Is that too much to ask for?

The hardest part of all of this is being so invisibly miserable. Masking my emotions, my symptoms and how utterly devastating this entire situation has been is an obstacle within itself. I want to live the life of a 26 yo with freedom, money, and the people to experience life with. Im expected to. Im also expected to work, to get out of bed in the morning, to do groceries, to go up stairs, brush my teeth, to feed myself, to refill my water bottle, to shower. Those expectations are automatic assumptopms, who the fuck thinks twice about those tasks? Also, why would a seemingly healthy 26 year old have any issues doing those things? Her labs are clean? She is successful in her social and work life? It is clear she is healthy, is she overexagerating? Are people taking her seriously when she speaks of her daily experiences that shes been forced to face?

Wearing the mask of my old self has been way easier than explaining something i dont even have the answers to., despite how difficult it is to perform for every single people in my life.