r/Fibromyalgia

Before you were diagnosed with Fibro what did you think you had?

No matter what I do, it just feels wrong and bad. Trying to help around the house is physically painful, heat makes me feel like I'm actually dying, my lungs just refuse to work properly, I always feel 500 pounds heavier than I actually am, and worst of all it feels like I'm just on a completely different time measurement scale.

I *need* to sleep for at least 9 hours to feel anywhere near functional, but I stay awake for at least 20 hours cuz damn insomnia refuses to let me rest, so my sleep schedule just keeps on moving forward no matter what I do.

It's impossible to keep a proper schedule. I hate it.

It's like I'm an alien or something and being on Earth is just actual torture.

i got the diagnosis and every even have scans of a herniated disc, but most doctors don’t even want to up my muscle relaxers ( that don’t work) i’m at my wits end with this and it seems to be getting worse. how do you guys get actual pain meds and what doctors do you even go to for those?

I (18F) was just diagnosed with fibromyalgia last week. But I am convinced it’s not fibromyalgia! I have been dealing with symptoms for my entire life at this point, my doctors have all been so confused with what’s happening. I have seen a rheumatologist,cardiologist,dermatologist,naturopath, and gotten SO MANY TESTS. So far I have been diagnosed with interstitial cystitis, Vasovagal syncope, early on set hip dysplasia, bone degeneration syndrome. For the longest time I was absolutely convinced that I was experiencing fibromyalgia but in the last year I looked more into lupus, it matches my symptoms quite well. (Chronic fatigue, pain all over all the time, kidney sensitivity and IC, unexplained fever-every single day multiple times a day it just spikes up, extreme rash which causes bruising, hair falling out is clumps, mouth and nose sores, chest pain, brain fog and extreme confusion 25/7, skin rashes up when in the sun or hot. I’m overall just so lost, all of my bloodwork has come back normal, the only issue is low iron which I’m now taking. My pee tests are all normal too. This is ruining my life and I just want to be a normal teenage girl. Somebody please help, has this happened to anyone else???

My fibromyalgia is usually at its worst when I'm walking. If I'm lucky enough to not feel it while walking, I feel the after effects for hours afterwards. Does anyone else experience this? I've been sat in non stop pain in my legs for the past two/three hours because I walked an hour today (in two separate half hour journeys) and it just feels like I get punished for trying to walk. I don't know how to make it stop. I feel so lazy when I'm struggling to walk and see people my age zooming past me with no issues. I miss being able to walk freely.

Hi everyone, From Canada, I am looking for support or anyone who has survived a similar situation. My journey started on June 12 2026 with head vibrations on the lower left side/neck, which progressed to severe headaches and intense, electric shock-like sensations across my body. My pain heavily worsens with unpredicted movements, like bending over or turning to grab something.
Doctors have thrown around several theories: Trigeminal Neuralgia, Occipital Neuralgia, and Fibromyalgia.
To manage this, I was put on Gabapentin (100mg) 2 times a day and then 300 mg three times a day and 300 mg once a day and currently in 100 mg and titrated up to 90mg of Duloxetine. It didn't seem to help my pain or my inability to bend/lift. Last week, my doctor had me reduce to 30mg of Duloxetine, and now I am 6 days completely off it.
Right now, my body feels completely broken. I am experiencing horrific withdrawal: intense "zapping" pains all over, pins and needles, profound exhaustion (no energy to even walk), extreme motion sickness where the world feels like it's rolling, dry mouth, and heart palpitations. I'm still taking 100mg of Gabapentin. Scans were normal, with gods grace. However my days are the worse now that I am going through withdrawal symptoms or us that my body after taking medication showing my bodies condition.
Has anyone else experienced withdrawal this severe? How did you get through it? I feel completely unstable and trapped in my bed, sometimes restless, crying and sudden anger issues. Any advice or kind words would mean the world right now.

I posted already that at my latest horrible pain management appointment the doctor mentioned I met the diagnostic criteria for fibromyalgia but minimized the findings because I already take Gabapentin for nerve pain. To me, shouldn’t I be checking with my primary or a rheumatologist to confirm or deny that possible diagnosis or rule in/out differentials? I already canceled my follow up appointment, he acted like he couldn’t be bothered with me anyway like my chronic pain from CRPS was all in my head and the problem was how I was psychologically. I’m debating on returning to my original orthopedic pain management doctor who is too busy to see me except for procedures or move on again and risk more maltreatment. Or do I just accept having an Athena based patient provider relationship with this doctor and just be thankful I get that?

My body hurts 😭

This has been discussed but I would like to know what other meds work for pain management besides cbd/thc gummies/smoke and opioids. I have limited mobility so working out or exercise is limited.

I was diagnosed with fibromyalgia in 2024, however I am 99% sure I have lived with this for a very long time. My new doctor basically dismissed me in April and I’ve just continued to suffer. Well, I have had enough. I can’t function like this.

Some things I say everyday because of how I feel are 1. I feel like ALL the Mac trucks ran me over 2. My body is on fire on the inside.

When i have a flare I guess you’d say, I cannot have anything touching me. I will have a whole break down. My clothes, jewelry, hair has to be up and not touching my skin at all. Nobody can talk to me, I can only explain it as I’m burning. I’m in pain every single day. My head hurts on and off all day every day. I sleep maybe 4 hours a night and can’t nap. It hurts to lay down, but also to sit and especially to stand. When I walk it almost feels like someone is ripping my shoulder blades apart. Numbness in my upper back. Constant debilitating pain on my left and right side, it bounces back and forth. I am hot then 1 second later I’m freezing. I get chills. I’m nauseous 80% of every single day. I have crazy pressure that nothing helps, it just goes and comes as it pleases.

I can’t take this. I can’t function in the world like this. The air hurts my skin most days.

I see my primary tomorrow and something has got to give. This isn’t fair. I don’t know how to function when I feel like I’m dying 24/7 😢

Guidance? Advice? How do I get this doctor to see what is literally in front of her eyes. She has never once went back and even looked at my diagnosis or any of my history. Apparently doctors don’t do that anymore.

I feel like I’m being failed and that shouldn’t even bother me because I should be used to it. But something has got to give.

A little bit of a heavy post I apologize - I was just wondering if anyone else has had to give up a hobbies or career they love because of the physical demands or the affect it had on their body and how you are coping with something like this?

I used to work in pet care before my fibro got bad and I miss it desperately even though it was demanding it was by far the most fulfilling job I've ever had and I would do anything to get back into it but I'm worried the physical demands I struggled with before when I was healthier will impact me more now and it won't be sustainable. It hurts knowing that could keep me from doing what I love.

Hi all

I've been diagnosed about 3 years, but recently I've noticed my dexterity taking a nose dive, it's been somewhat subtle just stuff like making more typos but tonight I threw a piece of cookware across the kitchen, it's like I just let go while I was moving.

I get really shaky if I do any sort of strenuous activity with my hands/arms too, but recently I've just been way shakier, using a screwdriver is getting a lot harder.

I've struggled with balance issues since I first got sick, pain management isn't really happening because the NHS is God awful, but my fatigue has slowly but surely improved over time, not to where I can live a normal life but I can make it out the house these days. I'm just worried I'm going to lose the use of my hands honestly.

thanks everyone!

Anyone else struggle with incontinence? Is it part of fibro or some other problem? I'm getting it investigated but I wonder is it something out of my control. I can pee for England and pee several times a day but my body doesn't tell me I need to go until it's happening so I'm there bolt upright running to the bathroom and need to use pads constantly. Is this a fibro thing you guys reckon? Anyone else experience this?

Also, I'm far past being embarrassed by toilet stuff. We all shit and piss. Sometimes the mechanics go a little wrong, that's okay. We work with it.

hi all. so i’ve had horrible pain since i was a very small child (https://www.reddit.com/r/ChronicPain/s/LqLjwgkeUw). i used to wake up screaming in the middle of the night as early as probably 3 or 4 because my legs were burning in pain. i have back, leg, back of rib, and arm pain almost every single day in some regard or another. i’ve ignored it for years but now at 21 i decided 2026 was the year for trying to fix my pain. nerve problems sorta run in my family, my dad has arthritis, sciatica, and degenerative disc disease and lots of other family members suffer from sciatica for one reason or another. i figured maybe i had arthritis or something as well, but kaiser did an “unremarkable” mri on me in 2025 and said they found nothing. i was in no pain at the time of the mri. my current doctor says she sees a small amount of fluid in my L4 (?) region of the spine but she doesn’t know if that’s exactly what’s causing the pain. after lots of discussion, she’s saying it’s possibly fibro, but i don’t have a lot of tender points on the body for diagnosis. she prescribed me 20mg cymbalta/duloxetine and i was very excited to try it at first but i’ve become extremely scared and anxious about it.
i know they say don’t read up on your medication, but i couldn’t help it really. it seems everybody has complaints about this med and calls it absolutely horrible, especially withdrawals. i have pretty bad ocd, so i was thinking this could possibly be a good two birds one stone scenario, but ive grown increasingly scared since. i know meds are different for everybody, but i cant shake the feeling of anxiety. especially people saying suicidal thoughts get worse or start out of nowhere. additionally, i have two concerts planned for the 11th and 20th of this month and im so scared that this medicine could make me sick and not allow me to go to them.
i’m about to start a one month medical leave off of work to try out meds and also get some other things figured out, but i am really scared and don’t know where to go from here. today is thursday, and i told myself i would start on monday.
any and all words are welcome and appreciated, i hope to hear from a lot of you. :/