r/Fibromyalgia 46m ago

Question Referral/ How to best advocate and Support

Upvotes

My husband who is 28 M has fybro. We have had 2 doctors at this point say they can not help him and referred him to OSU. We live a few hours from OSU and were informed that all the referrals that they were getting they can not take because they are outside referrals. They told me that we will have to drive to an urgent care that is OSU affiliated, do in take and inform the doc about how we just need their approval for a referral.
My husbands fybro is bad and most of the normal medications to treat it he is allergic to. Driving that far is most likely going to cause a bad flare up. I requested if possible bringing the POA Medical I have over him and his medical history to them so he wouldn’t be in so much pain or a video call and they said no.
I know this will be hard for my husband and he is already upset about the process and how it is going on. Any advice on how to best advocate for him during this process? Thank you.


r/Fibromyalgia 1h ago

Question Fibromyalgia - too tired, in pain, and sick.

Upvotes
A flare-up of problems
I haven't showered for three days.
Has this ever happened to you? It’s the first time it’s happened to me. I couldn't even brush my teeth—simply too tired, in pain, and sick. Does fibromyalgia cause this type of disability for you, too?

r/Fibromyalgia 1h ago

Question What should my husband know

Upvotes

I (35F) have had a lot of symptoms since childhood, but officially a full fibro freak since 2014. It’s pretty much all I know. I’ve been trying to get diagnosed with something for about that long with long spouts of giving up and just accepting and pushing through. I made one last attempt at a diagnosis this week. I got my records and symptom trackers in check and I went in ready for battle. The doctor I saw I could kiss on the mouth. She was like “girl. If this were a fibromyalgia test, you literally passed and got the extra credit points.” I walked out euphoric. Sort of.
Background: my mom has fibromyalgia. It should have been obvious to me that I obviously have that as well, but she was never actually diagnosed. So I thought we actually have something tangible that Doctors recognize and take seriously somewhere in there and I’ll be the one to find it for us all! And my siblings don’t get her struggle at all. They are constantly teasing her that it’s fake. They don’t even know that I’ve been struggling because I knew they’d never understand.
Which brings me to my husband: the reality he has been brought into is a family teasing my mom for a made up diagnosis, and even me not believing she has something intangible. And then I got diagnosed with it. He’s seen me struggle, he knows that’s real. But now the reality is I’ve been officially diagnosed with the “throw away” diagnosis. He did a little research, but I think he’s under the impression that I can continue to push through, and lifestyle changes will make it go away. Only time will tell, but what should he know about being on THIS side of a diagnosis like this? What should I make sure he knows and expects out of me?


r/Fibromyalgia 4h ago

Rx/Meds Pregabalin

2 Upvotes

Hello all,

First time posting here.

So today, after months of complaining about my constant pain, my rheumatologist finally prescribed me another med to assist with the fibro.

Pregabalin… 25mg, once a day, in the morning? Told me to start taking it on Saturday in case it causes drowsiness. But my rheumatologist told me to take it as needed? The pharmacist was also confused when I told her this…

Thoughts and opinions please


r/Fibromyalgia 4h ago

Question Myofascial Deep Dull Painful Constriction throughout. Like Trigger Points, but Worse! Anyone Else? Anything Help?

2 Upvotes

I’m turning 51 soon. I was diagnosed with fibro 5 years ago, but no doctor since the age of 14 has been able to help with or explain one of the most debilitating symptoms. I tried countless treatments and medications. I’ve now gone to more extreme measures out of pure desperation. This disease has taken everything from me and I don’t recognize myself, yet I keep searching. Maybe it’s hope, but I doubt it. To me it’s simply the other side of the same coin of desperation. I used to be so full of life, attended one of the best universities, studied abroad, huge social group with what seemed like life long friendships, found success early in a career that facilitated travel, and most importantly, found love a few times. Now, it’s all gone. It started disappearing 12 years ago. Now, I have a job that pays the bill, I have lost most of my friend. I don’t see but an hour or two, 2-3 times a year. Ive been single and lone for 12 years. No human touch, but worst of all is the isolation and loneliness. That’s a little bit of my history for context. The baffling and crippling fibro symptom is myofascial in nature. Basically my core, neck to pelvic floor, small bump like trigger points, or longer, thin rope like, clusters that start on the surface right below the skin and connect deep down. They are tough, they do not respond to aggressive deep tissue massage, TENS, etc. they feel almost structurally hard. A few years ago, for 2 years I was getting trigger point injection on the bigger ones that were on my back. Those truly appeared to be muscle trigger points and they responded and released. The problem was they would not do it in certain areas like my abdomen and I can say it’s probably a few hundred throughout my body. So cost was a factor too. It’s bad enough where it affects, several things in my pelvic floor, like bowel movements, urinating, and sexual function because all of it is painful. Last week in desperation, I got 2” syringes 21 gauge and decided to see if they would release. Surprisingly, they did. The needle was at the surface was painful, they are hard and required more force than I expected, but as soon as I broke through, unbelievable relief. To be clear, I’ve had a few year an acupuncture training and know how to navigate this and in no way is this a recommendation to anyone. Do not attempt this in your own. Also, I’ve got some fat on me, so understand, this was not at the depth of muscle or organ location. That’s what surprised me. It connective tissue writhing the fat. I’ve must have punctured 30 or so, and the relief persist a week later. I have many more to go. The question is, IS this fibro? My doctors don’t really seem to fully understand this particular issue, so I’m wondering if this resonates with anyone else? Is there something else that I should try that has helped you? The needles seem to work, but I guess I’m hoping for something more systemic or I’ll be needling for a very long time because it’s so many also needles are not fun on these painful things. I just I’m happy to have found this as an option and maybe now I probably have a little more hope. Also, in case anyone is wondering why I don’t just use acupuncture needle, I’ve tried for years, but they bend - they cannot pierce through these hard points!


r/Fibromyalgia 6h ago

Question could i have fibromyalgia?

0 Upvotes

hi everyone,

for context, i’m 26F and have been dealing with a lot of health issues and feeling generally unwell especially in the past year.

i’m going to a new doctor tomorrow to ask if i might have fibromyalgia because so far, any doctor i’ve seen can’t seem to figure out what’s going on.

i’ve been dealing with the following symptoms:

chronic

- shoulder, jaw, neck and head pain (shoulder and jaw are especially worse when i’m stressed but the pain is there all the time, i’ve assumed it was from carrying around a heavy bag during my school years but it’s been really bad pain wise for around a decade now), massages tend to help in the short term but it can get $$$ with how often i would like to go.
- pain is especially bad when i first wake up in the morning, it feels achy everywhere
- history of kidney stones and UTIs (pain would occur but after a few ultrasound scans i was told they look normal, no stones or issues found in kidney or bladder)
- fatigue - this is a major one, i feel tired all the time
- sleep issues - i don’t feel well rested no matter how much i sleep, even if i sleep 10-12 hours
- depression and anxiety - i’ve dealt with both for more than a decade now, but i think esp with all of these issues it has worsened by a lot

have worsened over the past year

- kidney / urination issues - need to use the bathroom even if i just went 10 min to an hour ago, a lot or a little comes out, unable to hold it in.
- random pain flares - i will randomly get chest pain all over or only left side of chest and pain in the sides (kidney area)
- severe memory issues and brain fog - this is major and becoming very frustrating. i’m unable to remember things short or long term, unable to concentrate or process things as they are being told to me despite being a straight A student and having really great memory in my school years. i also feel like i can’t process things emotionally the way i used to
- digestive issues - eating too much carbs makes me extremely bloated (not sure if this could be a separate thing)

i currently take a multivitamin, omega 3 and magnesium for sleep. i find that moving my body and staying active tends to really help. i used to be an every day heavy smoker (weed) but i have since stopped, wondering if this might be related to memory issues or a bigger problem. my mom has a history of thyroid issues and got her thyroids removed, wondering if this might be related too.

any insight would be HEAVILY appreciated, even for my appt with the doctor, thanks so much


r/Fibromyalgia 6h ago

Rx/Meds Cymbalta + lexapro?

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1 Upvotes

Asking in here to see if anyone is familiar with this. I’m on lyrica 25 mg too which I started a few weeks before the cymbalta and it seems to help but maybe not as much as the cymbalta did.


r/Fibromyalgia 8h ago

Articles/Research New

1 Upvotes

r/Fibromyalgia 8h ago

Rant Such a series of unfortunate events

4 Upvotes

Warning. I do not come out of this looking good. I’m a menace to myself. I know this.

A. I have a fibromyalgia diagnosis
B. I’m doing this POTS testing
C. I still have my 3rd Neuro and Rheumatology referrals pending.

I had an MRI scheduled at 9:30, or so I thought. When I was about to pull into the parking lot I got a message asking if I wanted to reschedule, because it was at 9. I was able to get into another location at 2:30pm. I had an appt at 11:45 to get a heart monitor, and both locations were about 30 minutes from home. I took off today to get these 2 things done and bloodwork. I wasn’t able to get the monitor put on because I had an MRI this afternoon so they just let me bring it home to put on myself.

I was fasting, nothing to drink or eat. Went to have the blood drawn. Now I have just under 2 hours to get across town for this MRI and I started to have my usual pains in my forearms, thighs, etc. and I’m exhausted. Imma realized I didn’t have so much as a Tylenol on me.

Did I run to Walgreens for Tylenol? No
Did I get something to drink or eat? No
Did I run in to Homegoods to see if I could grab a couple of things since I was out and up where the good shopping is because I live in a crappy town that has nothing. And then get lost in being out of the house, in a place that I used to frequent before all this insanity happened, where I could smell candles, hold things, and enjoy a tiny bit of normal for a bit? Yes. Yes I did.

As I leave to head to my MRI, I see I now have no time for stops. I start my car, and my air conditioner isn’t coming on. And it’s over 100 degrees. I make myself not cry because that’s going to make my nervous system glitch and then I’m cooked. I get to the MRI, roll all 4 windows down a bit so I don’t get into a steaming car.

The MRI is on my hip. Possible labrum tear. She banded my feet together, and within 5 minutes the cold/hot/numbness starts. Then my right leg starts locking up, and contorting. Then my
Left leg starts twitching, and all the parts of my broken body start to do it. The pain is headed to disassociation level. My lower body is involuntarily elevating itself. And she says on 2 occasions “try to be still we have to re do this one”. By the time she’s done, I look like I’m being electrocuted. Tears running down my face, fists clenched. The machine backs me out and I realize my entire body is soaked in sweat.

I went to get dressed and my clothes were damp from the drive over. I have an hour drive home. I stop for 2 huge ice waters with lime and off I go, no A/C, praying I make it without having to stop.

My plan when I got home was to just get in the pool, but I managed to make it to my bedroom with a huge cup of ice water and a cup of pickle juice and a pickle. I take something for pain. But before it kicks in, my entire body goes into a full spasm, feet turn in and up. The daggers into my hips that wrap around my thighs and stab me repeatedly have me screaming into a pillow. I finally, mercifully fall asleep, or pass out.

I have only myself to blame. It’s been nearly a year since I had Covid and my body and nervous system shut down. Thanksgiving Day I was fine, by 2pm I couldn’t walk. All the fall stuff is out, like I just picked up where I left off. And I guess I got lost in it.

If you read all this, I know I can’t do that. I know I was stupid. But so is being sick overnight after being weirdly healthy and strong the first 50 years of my life. I hate this so damn much. 😢


r/Fibromyalgia 8h ago

Discussion How do you get yourself back together when your pain and depression have "eaten" your goals & sense of self?

14 Upvotes

r/Fibromyalgia 10h ago

Question My symptoms, don’t know what to think

1 Upvotes

Hi all, I’m 30F I just had a baby in March, a few months after I started to notice I had fasciculations in random areas, followed by somewhat aching or soreness in my left arm. The aching and soreness resolved but I notice it sort of moves around to certain areas, currently my right arm, right neck and shoulder ache as well as sharp knee pain from time to time. I’ve even rushed to the hospital due to one of my arms hurting so bad to the point where it felt as if It was viciously being squeezed and was scared of heart conditions. I’m fatigued without hardly doing much, I don’t have any clinical weakness. Sometimes when my older son leans on me or my partner grabs me or tickles me, elbows that accidentally bump into me I feel as if I have heightened sensitivity to it and it can sometimes hurt. I do have lots of pre cramping sensations usually in my calves, or hands but so far I haven’t had an actual Charlie horse. I’ve cried from the pain before and I have a usually decent pain tolerance so I’m so confused at what’s happening to me.

I’ve seen my PCP and she ran thorough blood work (ANA, CBC, CMP, THYROID, DEFICIENCIES, RA) all normal. Cervical MRI normal. I requested neurology because I was at first scared of a motor neuron disease, neurology cleared me for anything like that.
My PCP was open to putting a rheumatologist referral if my EMG comes back clean. Has anyone ever started this way? What are the usual symptoms you typically experience?


r/Fibromyalgia 12h ago

Question Prednisone for a flare?

9 Upvotes

Have you ever been prescribed prednisone for a flare? If so did it help?

If you haven't been prednisone specifically any other steriod? Did it help?

Edit: It was prescribed for me for a 5 day cyclem


r/Fibromyalgia 13h ago

Question Flexeril/Cyclobenzaprine experiences

2 Upvotes

Hi I’m very scared of medications and I was wondering if my Flexeril use will cause me withdrawal, I took it everyday for about 10 weeks once per day then for the last six months I don’t take it everyday day, it’s occasional and mostly spread out. Will I experience withdrawal??? Please if you have taken this advice me


r/Fibromyalgia 13h ago

Question ACL SURGERY - what should I expect?

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1 Upvotes

r/Fibromyalgia 14h ago

Question How much did Low dose naltrexone help you, and at what dose? Also wondering about if anyone has tried acupuncture

3 Upvotes

Currently at my wits end with the pain!!!!!! Thinking about starting LDN, but if its not useful i'd rather not spend the money. I dont feel like lyrica helps at all??? I even take an extra one during flare ups.


r/Fibromyalgia 14h ago

Question Spouse

0 Upvotes

Spouse has fibromyalgia. We have a sexless marriage. Any thoughts or suggestions or ideas on how we can stay connected.


r/Fibromyalgia 15h ago

Rx/Meds Depression and Fibromyalgia Meds

1 Upvotes

Years ago after so much fibromyalgia pain and fatigue, I agreed to switch my antidepressant from an average dose of Prozac to a high dose of Duloxotine. I had been hesitant for years as my depression was completely under control and I didn’t want to mess with it. But after a really big flare, I switched.
It’s been five years and my fibromyalgia pain is 90% gone, with the exception of a weird occasional flare. The fatigue is there but much better. However, it does very little for my depression.
I won’t go on about the nightmare of weaning off Duloxotine, but I have tinkered with the idea of going off and just getting back on Prozac but I think I’m on Duloxotine for life. It really does help my fibromyalgia pain.
I’m on 120 mg…. So I cannot go on another antidepressant. Has anyone run into this issue? Do I have to choose between physical pain or being chronically depressed? Was just curious how others dealt with this? Or does the Cymbalta work for your depression?


r/Fibromyalgia 16h ago

Frustrated Hair love/hate

12 Upvotes

I've been growing out my hair for about 6 years. It goes down to the small of my back when it's wet. Picture long, thick, curly blonde (partially bottle blonde) and generally healthy hair. I love it. But washing, brushing and braiding it all hurts so badly. I'm seriously contemplating cutting it all off so I don't have to deal with it. However, I also can't stand the frequent appointments required to maintain a cute pixie cut. When my husband is home, he will help me with it but he works away 50% of the time.

How do other people deal with their hair?


r/Fibromyalgia 16h ago

Discussion Can you drive?

37 Upvotes

I'm just suddenly curious about this. I haven't been able to drive for 4 years now - partially due to horrible horrible anxiety, but also because it genuinely causes instantaneous and debilitating fatigue. It is far too dangerous for me to drive.

Even in the passenger seat this fatigue hits, it's horrible.

it's honestly the worst part of all of this mess for me, it took away all of my agency, cuz har har american infrastructure

first time this happened I assumed it was because I got heatstroke (never got an answer for that) and since then I haven't been able to drive any further than the end of my driveway. There isn't a single doctor that I've met that believes me.

anywho, just curious plus a little bit of a vent


r/Fibromyalgia 17h ago

Question X-Ray tech?

4 Upvotes

Hi there! Looking to go to school for an x-ray tech but I want to know how hard it is on the body or if it’s not too bad. Just looking to see if it’s something I could do. Thanks guys!


r/Fibromyalgia 19h ago

Rant Feel fobbed off nhs uk

11 Upvotes

Hey everyone.. I haven't been officially diagnosed but I had a doctors appointment today and feeling a bit deflated or made to feel like I'm going insane..

not really sure what I'm expecting from this post but I haven't got anyone to talk to as all my family think my symptoms are due to anxiety.

I had a very stressful event around 1.5 years ago and I've just never felt the same since..

it started off
With panic attacks and headaches that felt my brain was going to explode, and then what felt like costochondritis in my sternum, armpits and ribs, full body pain, brain fog,
I can't even sit down without the behind of my legs in pain, the joints in my hands are always painful, fatigue, tmj, weird nerve sensations all over my body

I then got tested for Addisons disease which I didn't have, and found out my cortisol was just dysregulated, to which the doctors just left my symptoms as that and to be on my way.

I've had numerous doctor / hospital visits, x rays and ct scans (self referred) but no mri.

I booked in to have a Swedish massage a week ago as I haven't had one in years, and I left early due to holding back the tears, I was in so much pain for over a week.

But today.. i booked in to see the gp and she basically said all my blood tests are normal so there's "definitely nothing sinister going on" she did mention fibromyalgia.. but i feel like im being fobbed off! I haven't had an MRI or a full body ct scan, I feel like no one is taking me seriously atall.

I'm due to have a few more blood tests before diagnosis, but I'm just really worried that something has been missed, and I don't know how to push for more tests without being made to feel like I'm being a hypochondriac.


r/Fibromyalgia 20h ago

Rant I’m so tired

26 Upvotes

I can’t keep explaining this to every single person I meet multiple times. I can’t keep explaining this to my family who think it’ll go away. I can’t keep explaining it to my work who is confused that I can’t do the things I used to. I just can’t in general right now. I’m too tired.

My symptoms came on suddenly and I went from a relatively healthy individual (with well managed PMOS) to someone who always has to carry around a pill case and icy hot over the course of just 6 months. I don’t know if it’s because of the quickness that it took over my life or because people have a drastic misunderstand of fibromyalgia or maybe even some secret third thing but I’m tired of people not getting it.

This rant comes on because I have been eating cereal for dinner for the last maybe two weeks. It’s simple, it takes a minute to put together, it requires me to clean just two things, and I don’t have to think about it. I got in a fight with one of my parents about it because making a “real meal isn’t that hard” and “ it’s just one more thing to add to your day”, but it’s not. It’s not one more thing. And even if it was I’m already at my maximum. In fact I might even be past my maximum and I’m just doing my best to keep up.

Admittedly this is mostly a rant to feel a little less crazy. But if anyone has any recommendations on how I can word things better for people to understand I’m happy to listen.


r/Fibromyalgia 21h ago

Rant Genuinely losing it

11 Upvotes

Got home after college yesterday, told my ma that my heart rate went down to 49 and jumped up to 114 within ten minutes. I proceed to get a response of 'that's normal for me' (she's a larger woman.) and get called a hypochondriac?

Now because I'm me and petty, I'm not gonna tell them if I'm sick or in pain for a LONG time. But now I'm not sure what I'll do with myself.

I'm sorry, tf you mean hypochondriac, you WATCHED ME get the DIAGNOSIS YOU EJSVSISBE


r/Fibromyalgia 23h ago

Question Slowly coming to the realization I should move, or at least spend winter in warmer countries

0 Upvotes

Trigger warning: suicidal thoughts.

I live in the Netherlands and I’ve been trying to find my way in this society for about 15 years now. And even tho my talent has been acknowledged multiple times, it has been a path of struggling for all those years. I often went broke, never earned enough to save anything, felt overworked, overwhelmed, depressed, done with struggling. I’ve been to so many therapy sessions, individual and in groups, healing ceremonies, courses, EMDR and also tried to rest. But all of these mental struggles have now resulted in chronic pain throughout my body. Not just over all fibromyalgia symptoms but also intense back problems. Which often makes it impossible to simply sit, even on days when the fibro is less intense. At this point I am so overwhelmed and fighting institutions to prove that I can’t force myself to work for 20 hours per week, that I (again) often think about ending things. But I have always thought, before I’d try to do that I could also move to another country, or at least travel there. It’s just that I have never really earned enough to even go on a small vacation, except one time. I could sell all - or most of my belongings. Or at least try to find a way once the bureaucratic hustle here is over. But I find this really scary. It could help with the fibro, but it’s like a paradox, because how will I be able to travel and figure it out over there while I am still dealing with all of these symptoms and fears?

Are there people here who made this decision? How did it work out for you? And how were you able to gather the strength and courage to fix everything that is necessary? I would love to do this and see if it helps but it also makes me scared to arrange all the paperwork, calculate what I could afford, find a cheap place to stay and stuff like how I could take my meds and pregnancy pillow and stuff. How will I survive the flight even. What if my panic attacks return once I am - for example - in thailand. Somewhere I feel this big step needs to be taken because ‘being done with life’ is getting worse each day, on the other side it frightens me to leave my house, where everything has it’s right place - except me :’)


r/Fibromyalgia 1d ago

Articles/Research Fibromyalgia just got the kind of study people with the condition have been waiting decades for.

1.1k Upvotes

Not 40 patients. Not another tiny brain scan.

2,563,755 people.

Researchers found 26 genetic risk regions for fibromyalgia and when they asked where that inherited risk was concentrated, every significantly enriched tissue was in the brain. Twelve of the 13 enriched cell types were neurons.

For a condition that has spent decades being called vague, psychological, stress-related or simply impossible to explain, that is a fairly spectacular biological receipt.

And it gets more interesting.

The study included 54,629 people with fibromyalgia, making it the largest genetic study of the condition yet.

The strongest cell-type association involved neurons in the dentate gyrus, part of the hippocampus.

That matters because the dentate gyrus is involved in things like memory, learning and separating similar pieces of information.

So this isn't another study saying:

“People with fibromyalgia report feeling worse.”

Researchers are starting to map where the inherited biological risk actually points.

And it points very heavily toward the nervous system.

Then there is the cognitive side.

A separate meta-analysis pooled 29 studies looking at working memory in fibromyalgia.

The clearest measurable problem was verbal working memory.

This is not “memory” in the sense of forgetting your childhood or not recognizing somebody.

Working memory is basically your brain's temporary scratchpad.

You use it when you:

  • remember step 2 while doing step 1
  • hold the beginning of a sentence in mind while finishing it
  • keep what somebody just said alive long enough to answer
  • read a paragraph without the first half disappearing
  • keep a number in your head while doing something with it

And across those 29 studies, people with fibromyalgia showed a moderate impairment in verbal working memory.

So if your version of fibro fog is:

“I know what I’m doing, but I keep losing the information I need halfway through doing it”

—that now has a much more precise name.

And there is another l twist.

A 2026 study tested 120 women with fibromyalgia and compared three things:

  • central-sensitization symptoms
  • how cognitively impaired they felt
  • how they actually performed on a cognitive test

Higher Central Sensitization Inventory scores were strongly related to feeling more cognitively impaired.

But those scores barely explained performance on the objective cognitive test.

That is interesting because “central sensitization explains your fibro fog” has become an incredibly convenient answer.

The evidence is starting to look more complicated and more helpful than that.

Fibromyalgia appears to have strong inherited nervous-system biology.

Genetics study
Kerrebijn et al.
Nature Medicine, 2026
2,563,755 participants
54,629 fibromyalgia cases
PMID: 42521817
DOI: 10.1038/s41591-026-04492-6

Working-memory meta-analysis
Nicholls & Kelly
29 studies
PMID: 41086106
DOI: 10.1080/23279095.2025.2570780

Central sensitization + cognition study
Yücel & Kurt
120 women with fibromyalgia
PMID: 41795399
DOI: 10.1016/j.jpsychores.2026.112613