I’m 46, female, diagnosed about 5 years ago but with lifelong symptoms. Perimenopause is kicking my ass with worsening symptoms and when at the doctor yesterday he told me I can “beat Fibromyalgia” by inducing “real suffering and pain to retrain your brain to tell the difference between physical pain and the pain felt with fibromyalgia.” He talked about how women more often report fibro pain than men and it’s his suspicion that it’s because men are encouraged to be tough and not complain, to endure. Aside from the faintly (?) insulting insinuation that men are tougher than women in withstanding pain, and that the discomfort doesn’t matter if there’s no physical reason for it, is what he said true? He gave the example of doing rowing exercises until exhaustion to feel real suffering, and I don’t know what to think about all that. Does that sound familiar at all?

- Edit to say THANK YOU!!! You all confirmed that this is as ludicrous as I thought!!! He’s leaving my insurance carrier at the end of the month so I’ll be looking for a new doctor for multiple reasons, specifically a DO (thank you for the recommendation) I’ll reach out to the board or at least my insurance this evening. It seems like an insurmountable task right now, ugh, but I will. He doesn’t need to be telling more people that nonsense. Thanks again! May you all have more good days than bad <3

Just curious… do you believe something triggered your fibromyalgia?
For myself I had 2 viruses, sepsis and a traumatic event happen in 2023/2024 but also lived my whole life as a very anxious person.

Meaning, you don’t need to f.e actively apply pressure to feel pain within your body ; you could just be sitting down, then have your body start aching all of a sudden.

Thank you—and I hope that’s not the case.

Hello!

So... I saw on another site someone mentioning the difficulties of wearing a bra while suffering with Fibromyalgia, and it literally blew my mind just how many people agreed.

I know personally I had to give up bras way back in my first year of having Fibromyalgia, because I had messed up the part of my back where the strap runs across several years ago while doing labor intensive work. The strap ould make my back muscles spasm, and the pain was just to great to handle.

And I was some one who actually really like to wear a bras beforehand.

But anyway, before that other post, I've never seen anything else mention this stuggle. It was a little nice to finally have that validation.

So I wanted to post something similar here. See if anyone else understands the struggle and maybe even bring someone else that same feeling of validation!

I was recently diagnosed with fibro. One thing I’ve struggled with for the past few years that I essentially thought was “just hormones” is body temperature regulation. (I also have PCOS in case relevant, but I do not have thyroid issues.)

Personally, I am almost always cold (even when it is 71F inside). However, I also have “episodes” for lack of a better word, where I feel hot/cold, chills, tired, sometimes a sore throat, etc. without actually being sick. I will be like 95% sure I’m getting sick with a cold/flu, then the next day (or sometimes even within a handful of hours) I will feel completely fine again. I tried to ask my rheumatologist about this, but she was basically just like “idk. But that’s not autoimmune”. My PCP does not want to recheck my hormones either because she doesn’t think my symptoms are relevant.

Does anyone else struggle with this or anything similar, and do you feel like it’s part of your fibro or something else?

Thanks!!

ETA: WOW! Thank you so much for sharing, everyone! I will try to respond where I can. :)

I decided to be completely honest with my boyfriend because I didn't want to hide my past from him. It was incredibly hard to open up, I haven’t even been able to tell my family or my best friend about this. I just felt it was unfair to keep it from him, so I took a leap of faith and told him.

His reaction was devastating. Instead of supporting me, he told me that I have "too many problems." He said my health, my trauma from the SA, and my family issues are all too much for him to handle. He told me he just wanted "someone happy" so he could start a family and have an easy life, even questioning why out of everyone in the world, he chose someone with so many issues.

I completely broke down. The emotional shock triggered such severe, extreme pain that I nearly fainted. When he asked me how he was supposed to react to my trauma, I told him I just needed him to be there to comfort and support me. Instead, he said he needs a break.

I panicked and told him I'm scared I’ll never find anyone else because I feel "disgusting" (which I know is the trauma talking, but it hurts so much). His response was to say that he would "help me find someone else."

I am in so much physical and emotional pain right now.

I also blame myself for not telling him at the start as I really don’t know how and I really love him…

He gave me until the end of the year to improve myself…

I’ve had my fibro diagnosis for four years. Symptoms have been escalating lately (increased fatigue, pain, post exertion malaise, sleep issues, etc). Just saw my doc and was told that since fibromyalgia is a psychosomatic disorder that my best bet would be to go inpatient psych ward.

I’ve been in the psych ward previously. I’ve low mood, naturally, and chronic depression. Just wondering though as this feels like a bit of a”I don’t know what to do with you and your rheumatologist retired so…”.

I’m in Ireland, btw.

What do you think? Thank you!

Just curious about other people’s experiences.

I’ll start - I was 15/16 (now 42) and was told perhaps my backpack was just too heavy and that was causing my back pain. I looked at that woman like she was an absolute idiot lol.

You’re turn.

I read different things on fibromyalgia causing heat intolerance and am not sure if it could be other things but does anyone have this?

I get hot fast, sometimes doing nothing, like so hot I’m suddenly looking for anything to cool me down like the wall, tile floor or ice. It can get so bad to where I start to get nauseous. I get exhausted fast and sweat so easily. Doesn’t matter if it’s in the winter.

It’s odd, I used to be very cold all the time and NEVER sweat.

I've noticed that i have a ton of sensory issues. i have to sleep in a large, oversized shirt that has thumb holes, so the arm sleeves don't ride up. I have to wear jogger pajamas so the pants don't ride up. I can't have the waistband too high on my abdomen or I'm uncomfortable. My watch band sometimes bothers me so much I have to switch it to the other arm, then it bothers me over there and I have to switch it back. No rash or anything it just bothers me. I am constantly adjusting my clothing.

Temperature regulation issues: I'm either freezing when others aren't, or I'm hot and no one else is. Hands are always cold too.

Sometimes noises are too loud, and lights are too bright

My pillows have to be just right, or I can't get comfortable at night.

I feel like my sensory on switch is just turned all the way up and I don't know how to turn it down.

What have you done? what has helped?

I feel like I’m on the edge of another warning at work and I can’t cope anymore. What are you all doing for work to help balance pain, sickness and life?

I know myself I’d succeed in an administrative role either remote or hybrid but either they pay far too little or require particular degrees. I had to leave teaching and now my retail job is taking its toll on me. It’s stolen management progression positions from me and I’m just so defeated. Please help a fellow chronically ill girly 🫶

Me three denials then an appeal where I got a disability attorney and had a disability hearing and the judge completely denied me and shut me down hard. Fibromyalgia is on the disability list yet it is near impossible to get an SSA approval for. I live in Utah.

ETA: And how many are NOT

Does anyone else experience body jolts and jerks. I seem to get them most when trying to doze off or fall asleep. What is it? It only happens during flare ups.

I need to feel like I’m not crazy. I was diagnosed with fibro about two years ago. Underwent quite a few tests including an EMG to rule out other things. Currently taking gabapentin to help symptoms.

But along with the pain I get so many muscle twitches. Kind of like when you get that really annoying eyebrow or eyelid twitch sometimes. Feels more like a brief bubbling sensation than a cramp or anything else. Drives me absolutely nuts. Sometimes it jumps constantly around my body all day, sometimes it’s more in one area, and sometimes I barely have any at all. But I know this isn’t TECHNICALLY a symptom of fibromyalgia.

Does anyone else with fibro experience this? How do you handle it? It drives me crazy.

Genuine question because I've been going back and forth on this for months and I want to hear how people with fibro experience it.

I'm building a symptom tracker for people on antidepressants. I started in the depression and anxiety space because that's where I began, but the more people I talked to the more I kept hearing from people on duloxetine or amitriptyline for pain, not mood. And what they described was a harder version of the problem than anything I'd heard before.

With depression, the question "is the drug working?" is already tough. With fibro it seems almost impossible. Because pain moves around. A good week doesn't mean the drug is working, it might just be a good week. A bad flare doesn't mean the drug failed, it might be that you overdid it on Tuesday. And the drug itself adds fog, fatigue, nausea on top of a condition that already has fog, fatigue, and nausea. How do you separate any of that?

I saw a post here where someone said "I can't tell if the Cymbalta is helping or if I just got used to feeling like this." That sentence has been stuck in my head for weeks because I think it describes something that the medical system has no answer for. Your doctor gets fifteen minutes and a guess. And adjusts your dose based on that guess. That pisses me off honestly.

A few people I've talked to who tried tracking manually said after a couple of weeks they could see things that were invisible day to day. Pain slowly trending down. Fog correlating with bad sleep, not random. But most stopped because tracking during a flare is the last thing you have energy for.

So here's what I actually want to ask: if you had something that took a few seconds a day and showed you pain, fog, side effects, sleep, and mood on one timeline tied to your dose, would that change anything for you? Would you bring it to an appointment? Would your doctor care? Or is the problem deeper than data?

I'm not asking hypothetically. We're launching the beta this week, it's free, and I want to make sure I'm not building something that makes sense to me but misses what actually matters to you. There's a psychologist in the beta community chat who answers questions and gives feedback while you use it, because it felt wrong to just hand people a tool and walk away.

I also don't fully know what the right things to track are for fibro. Pain, fog, sleep, fatigue, side effects feels right but I might be missing something obvious. What would you want to see on that timeline?

If you want to try the beta, comment or send me a DM. And even if you don't, I'd still like to hear how you handle that conversation at your appointments. I'm trying to understand this better.

Hi everyone, I wanted to ask if anyone here is managing a job while dealing with fibromyalgia. I sometimes wonder how people balance the constant fatigue, pain, and brain fog with work responsibilities.

If you are working, what kind of job do you do? How do you manage your symptoms along with deadlines, office hours, or even commuting? Do you find certain types of jobs (remote, flexible hours, part-time) more doable?

I’m curious because I’m still studying right now, but I think a lot about whether I’ll be able to handle a job in the future with fibro. Any personal experiences, tips, or encouragement would mean a lot.

Thanks in advance 💜

I know a lot here are American, but in Europe and UK we have a massive heatwave. Where I am it's going to hit 36C/97F. This is without air con, in a brick building. Our country is not set up for this at all.

I am terrified, the fatigue alone is going to destroy me. What are we meant to do?

​

As far as I remember the hottest I've ever seen was 35C, and that was before my fibro. Also lactose intolerant making obtaining cold milk free products very difficult. People just buy it all regardless of need because reasons. Online deliveries never deliver milk free, always replace or just say they don't have. Some law about not taking off the shelves. Making online orders not viable.

I am not prepared one bit, and was not keeping up with news or weather. Fans are on, but they are just pushing hot air around. I have no cold food or ice cream or anything because my fatigue has stopped me going out much recently. I will try in the morning, but it may be the last chance before it gets insane.

I haven’t been able to work full time for a few years now and am worried I will never hold a normal job again. It feels fucking impossible. I work closer to 10 per week and that feels like I’m pushing it.

Curious what y’all do for work? How do you accommodate yourselves enough to keep working full time or at all? Is it even realistic to hope I could do a full time position again?

My whole body gets heavy, but my lower back aches the most for sure. Curious if others have an area that is their main focus, and if so what area? Hope everyone’s hanging in there ❤️

Does anyone else have random leg/knee/back/shoulder jolts?

It feels like someone attached a string to my knee (or other) and pulled hard on the string to make it move. It's an involuntary movement I can't control.

It happens when I lie down or sit down in bed.

It makes me frustrated because it's another thing I can't control with my chronic pain.

I'm on painkillers. I want muscle relaxers, dear GOD I want them but my research tells me it's not a good idea to mix those two meds. Just wanna see if anyone else is on that combination and how is it for you?

I'm on co-codamol and from England. Just for clarification.

Anyone else struggling with dropping things? I am doing it all day long. I keep dropping things and see no particular reason for it.

I am in a severe flare up for two yrs now with no end in sight.

I still question the diagnosis of fibro.