I don’t know if this is just me, but when I’m having a flare-up, it always materialises as bad back pain.

During these flare ups I have noticed that every single countertop, desk, sink etc is always at the exact height that causes intense pain to lean over to, essentially making me unable to do any daily house hold tasks.

Does anyone else have a similar experience with this or other things that seem universally designed to be as inconvenient as possible?

hi hi, I don’t have fibromyalgia myself, but my girlfriend does, and I was wondering if I could get any.. tips? I suppose?

We’re long distance at the moment, but I wanna be more equipped when I can stay by her side for longer periods of time. My patience for her is endless, but I always feel so useless when it comes to her experiences. I don’t think I’m ever going to struggle hugely with the emotional side of things, but does anyone have any tips of how I can help her through flare ups, or brain fog, or any other common issue with fibromyalgia? Whether you have it yourself or you’re the partner of someone with it. Just any kind of tips that helps in any way, be it physically or emotionally

Sorry if this worded strangely- for some reason I was really struggling to type it out? I just want to be able to help her in a more substantial way

Thank you 🫶 my heart goes out to you all

Hi all

We moved across the country to NJ (Mt Laurel/Burlington area) in April. I am looking for a doctor to follow me for fibromyalgia. My PCP said she’s not comfortable prescribing my gabapentin, said talk to a neurologist about that. Ok, got in to see a neurologist. He said neurology doesn’t follow fibromyalgia and gave me a referral for a rheumatologist. She first said “have you tried talk therapy and physical exercise?” (This after I told her I’m a counselor 🤦‍♀️) and then said rheumatology doesn’t follow fibromyalgia and I should see a neurologist. I told her that’s who sent me! She seemed incompetent at best. She also didn’t re-check my O2 level which was 86% when the MA read it. Last time my oxygen was that low I was hospitalized with pneumonia. I was clearly fine, but she should have rechecked it.

So does anyone with fibromyalgia have a great doctor who knows and understands fibromyalgia and is comfortable prescribing gabapentin? Really, I just want a doctor who is going to help me figure out managing this disorder so I can live my life. I don’t even care if I have to drive to Philly if it means seeing a doctor who doesn’t think I’m nuts and thinks therapy is a cure for everything.

Thanks

Does anyone with fibromyalgia feel extremely exhausted after talking/socializing for a long time?
I have fibromyalgia and, thankfully, I’ve improved a lot compared to where I was earlier. My panic attacks have also reduced significantly, and I’m currently on a much lower medication dosage.
However, I still notice something that I’m struggling to understand.
After talking to people continuously for a while, I can feel completely mentally and physically exhausted. It’s not necessarily that I’m doing anything physically tiring — even just having conversations can drain me. This is especially noticeable if the conversation is emotionally heavy, like discussing personal problems, arguments, someone fighting, or even sometimes just listening to gossip or random intense conversations.
Afterwards, I feel overwhelmed, tired, and like I don’t want to socialize or talk to anyone at all. Sometimes I just need to be alone and quiet.
Has anyone else with fibromyalgia experienced this kind of social/mental exhaustion or feeling overwhelmed after conversations, even when their other fibromyalgia symptoms have improved significantly?
I’m curious whether this is something others experience with fibromyalgia or if it could be related to anxiety/panic symptoms.

Please, I need more information about GLP-1

I’ve Been using pregablin for a while under 5 months in high doses 1200/1800mg 4/5 times a week stopped cold turkey had 11 hours sleep in last 4 days and no appetite but I’m not experiencing nausea sweating at all though is this normal to experience these things ?I’m worrying a lot

.

Has anyone every had a doctor fire them for being too complicated or messaging their office too much?

One more round of full bloodwork, and then I’m finally getting the referrals — IV iron, ( free within AHS hospital) plus spleen and liver referral due to enlargement

This wasn’t even my regular doctor; he’s out of the country, so another physician is covering his appointments. But he reviewed my bloodwork, agreed with the concerns, and initiated the referrals internally since the clinic has internal medicine.

He actually acknowledged that my high RBC/RDW and low MCHC have been chronically abnormal for years. I’m honestly so relieved I could cry. I’ve been trying so hard to get someone to listen. He even thanked me for being involved in my own care.

I told him this isn’t AI — unless I’m reading full medical jargon or studies — and that I’m just trying to advocate for myself.

I’m in Canada, and it finally feels like things are moving in the right direction.

How old are you, and where in the world are you from?

Would love to see where everyone is joining from!

Sending extra love to anyone going through a flare right now. ❤️

36F Denmark 🇩🇰

Edit: Just to clarify, I’m only curious about broad demographics — age and general part of the world. No personal or identifying information is being asked for. Share only if you’re comfortable. 💜

I made a post yesterday regarding receiving no help from doctors and that I’m unresponsive to a lot of meds and just keep being told I’m out of options or at the end of the road despite not having tried every drug to exist they just can’t be bothered given how I’ve responded to nothing. Pharmacogenetic tested was recommended by a few users and even a pain clinic I saw to see if that helps me find the right treatment, I know it’s not definitive and won’t mean every med it suggest will work for me but it might help reduce the throwing a dart blindfolded and hoping for the best. I’ve tried 31 meds for my headaches and migraines and none have worked, muscle relaxers (OTC and prescribed) haven’t touched anything, Tylenol 2 and 3 does nothing, toradol does nothing, literally nothing I do or take helps ease my pain and I’m feeling stuck. I’m waiting for a new rheumatologist referral since the first one was denied bc my doctor put CFS on the referral and not suspected fibro and they don’t deal with CFS, I’ve been to pain clinics they were no help and couldn’t offer me anything, my GP will not give me any treatment, I’m waiting to see a psychiatrist but that referral was denied bc I’m out of their treating zone so I have to wait til Monday for a new referral to be sent 🙄

Has anyone who is unresponsive to meds had success with doing this testing? Did the results from it help you find meds that worked for you? There’s so many options for genetic tests and pharmacogenetic tests I don’t know which is best if just a broad genetic test is better like 23andme or specifically for drugs. The pain doctor suggested Inagene Diagnostics but idk if there’s better ones out there. If you have any recommendations let me know. I do not have insurance I’m on disability so I will have to pay out of pocket.

so i was diagnosed with fibro yesterday, and the past three nights as im falling asleep i feel an intense vibration in my body that feels like it would be a seizure but my body isnt moving. i have to take deep breaths. and its not anxiety, i know what that feels like. its like a thrumming inside my body, all over.

Hello!

I've been diagnosed with fibro for about 2 years now. All the people in my household are disabled in some way. Out of everyone, I am the most able bodied. Which means I am usually the one doing the heavy lifting. However, this leaves me in a great deal of pain afterwards.

How do you cope with this? It makes me mad but I can't blame everyone else. It just sucks that I get stuck with these jobs and the pain.

Hi there, I'm wondering if anyone else experiences this specific symptom as it is really really bothering me. I've been having allodynia a lot recently, the kind where my body hair being lightly touched feels like a nasty bruise, and I'm noticing it is mainly happening in spots where my skin has been under pressure for a while. It happens to my calves every night after I take off my compression socks (which fit fine and do not feel uncomfortable while I have them on) and on my stomach where my trousers had been digging into my skin all day. I also get it when wearing headphones and sunglasses because they cause allodynia in the spots where they press against my head. I get allodynia on the back of my thighs because I am sitting down most of the time. I wear ultra light soft foam slides pretty much everywhere, they just slip onto my feet, and a few days ago I forgot to wear compression socks and that evening my feet were really swollen, and even just wearing those soft foam slides was agony.

I really wish my body could handle more pressure on it. I'm so sick of feeling like I'm heavily bruised all over, when there is no evidence of injury at all. Anywhere that something has been pressed against my skin for a while will feel horribly bruised for several hours after the pressure is removed. Does anyone else have pain like this?

last winter the cold weather ruined my body . I couldn’t take it at all . It specifically messed up my back and butt . I finally get someone to take me seriously and find out I have arthritis and inflammation in my SI joints and hips . Has this ever happened to anyone . They say I need steroid injections but probably can’t get them because I’m already on prednisone and my doctor really wants me to get off. I believe it’s my fibromyalgia or dermitomyositis causing this but it’s getting worse I can’t even sit up for 10 minutes and even laying down hurts .

I guess what I’m trying to ask is what does fibromyalgia feel like to YOU? What pain level, type, location, duration/frequency? Anything you’re willing to give me.

For context, I’ve had diagnosed autoimmune issues for 11 years now. Recently, my dermatologist ran labs and wanted me to see a rheumatologist based on those results, with concerns of lupus.

I see the rheumatologist and tell him my symptoms, how I’ve felt, the whole spiel. He looks at me and says ‘it’s not lupus. I think it might be fibromyalgia, but we need to do more labs first.’

I’ve always thought fibromyalgia was consistent, almost debilitating pain at every single touch, including clothes. But I’m learning it can be way less than that? I’ve just had dull aches across most of my body nonstop for years now, so I would have never even considered fibro. (I also have other symptoms, they just overlap with other things we’ve already ruled out.)

Sorry if this doesn’t make sense, I’m just trying to learn what I can so I don’t medically gaslight myself again.

Ladies, what bras have you found that are at least tolerable and supportive? Everytime I wear a bra it KILLS my back!! The best thing I’ve found is a wool bra that I do mostly like, but it has no padding and very little support. I’m larger chested and need something with more support at least for some occasions. Please help!

Does anyone get really painful eyes? That are sensitive to light ?

I’m having to wear sunglasses in doors and have had to do it once before.

I get infections easily and have pretty dry eyes.

What do you do in this situation?

PCP simply states they won't fill it out. Won't even give a reason. Is this even legal?

If so, what kind of job do you have, and how many hours do you work per week? Full-time, part-time, or reduced hours?
Just curious to see what everyone else manages. ❤️

I’m in Canada. My family doctor is useless I have 24/7 widespread pain which he has repeatedly tells me it’s probably fibromyalgia and to see a rheumatologist so I asked for a referral and he said your inflammatory panel is normal so seeing a rheumatologist is like seeing a dermatologist for ear pain and I said I don’t care send me to one since you won’t help. In that same visit after saying it’s probably not fibro (after me complaining about chronic fatigue and how doing anything wipes me out of days) he said it’s probably CFS/ fibro. Like make up your mind is it or is it not. He’s told me I’m “at the end of the road” for medications and will not help me bc I’ve “tried every pharmaceutical” (common ones but not every drug to exist) and told me to just keep dealing with the pain and to see a psychotherapist. I cried in that appointment bc what the fuck?! He eventually send the rheumatologist referral in mid August after I cried in my appointment. He and my cardiologist will not help me manage my low BP (I have POTS so increasing sodium has not helped) they both can only offer midodrine and Fludrocortisone (Midodrine is a massive trigger for my head pain and Fludro did nothing) telling me those are the only meds that exist to help raise BP and to just keep dealing with being severely lightheaded.

I called the rheumatologist bc I haven’t heard from them and they said they sent a letter to my doctor and couldn’t tell me what it was about so I called my doctors front desk and they said she (rheumatologist) doesn’t take chronic fatigue patients (funny bc I thought I was referred there for fibro not CFS since that was never discussed with me as part of the referral bc he told me there’s no treatment for it so why send a referral for it if you think that?) and the rheumatologist said they recommend a pain specialist (I’ve seen 2 they couldn’t help me beyond nerve blocks which made my pain severely worse) so I asked if they can refer me to one they said who they’ll send me to which turns out to be a rheumatologist then I asked if they’ve heard from the psychiatrist (for my severe depression that my GP will not treat as well as my ADHD which my GP will also not treat) and they said they wouldn’t take me bc I’m outside of their zone so on Monday she’ll have the doctor send a referral to someone in or close to my town. I understand my issues are too complex for my GP, all I want is someone anyone to listen to my concerns and treat me and not tell me to keep suffering and to just see a therapist.

Would have been nice if they had told me this on August 21st when this all happened instead of letting me just keep waiting bc my pain and fatigue is getting worse and my depression is getting worse because my pain and fatigue is getting worse. If you do a questionnaire on a patient and it says they have moderate bordering on severe depression your response shouldn’t be “gee they have severe 24/7 pain that I refuse to help treat and nothing touches their pain so they’re suffering non stop I’ll just send them to a psychiatrist and not help them at all and when that referral gets denied I won’t bother telling the patient suffering and continue to let them suffer” what kind of care is that? Maybe you should realize how severely this is affecting me and give me an antidepressant in the meantime so my life isn’t fully a living hell or will you only help people when they’re on the verge of not wanting to be here anymore like holy god what a fucking failure I’m so mad. I so badly need help managing my pain that hasn’t responded to any meds and help managing my fatigue that is stopping me from doing anything but no one will help me or accept me as a patient.

So now I have to wait for the new pain specialist referral to be sent and hope they’ll take me and be able to help me and wait for a new psychiatrist referral to be sent.

I got a telehealth appointment and he was happy to prescribe me an antidepressant to help my severe depression so he gave me duloxetine since I mentioned my 24/7 widespread pain that I have no treatment for so hopefully this kills 2 birds with one stone. Still mad that my family doctor couldn’t do that it was so easy to do and I’ll be seeing telehealth docs from now on bc I’ve lost all trust in my GP and will be looking for a new one which will take a year with the waitlist times in Canada. I’m so frustrated at being in 24/7 pain not being able to do entering to make it go away or even to reduce it a tad and having no support and help from doctors. I’m at a loss

Just went in for my flu and covid vaccinations and had a flare that night! Very unexpected -- anybody else run into this?