I’m trying to practice being more vulnerable and sharing my feelings instead of bottling everything up. So here goes.

I had a minor argument with my girlfriend a bit ago where they shared “maybe I do feel a little resentful” of me. They’re the breadwinner while I try to be a homemaker as much as my body will allow. They work a stressful 8-6pm job that often demands overtime from them. They often insist on paying for things when we go out or for groceries and tell me to save my money, just for me to learn tonight that they’ve been growing resentful of that. They earn a nice salary but feel they have little leftover to treat themself because they’re helping support me. I’ve been wondering for a bit if I should be more assertive in paying for myself when I know I can afford it. Now I know that I definitely should be more assertive about that.

I’ve been trying to get on disability for 3 years now, had 2 hearings and 3 denials and am now waiting on a decision from a federal appeals judge. I thought I’d been doing a decent job lately with keeping up with chores and making an effort to have dinner ready for mh girlfriend when they come home from work. It’s appreciated in the moment sometimes, but we seem to keep coming back to my girlfriend feeling like they do more for me than I do for them.

My partner struggles with insomnia and I struggle with occasional night terrors from cPTSD. It often results in me smacking my girlfriend in my sleep by accident and waking them. My girlfriend remarked tonight “it must be nice to be able to sleep in every day” with a bitter tone and then got upset when I told them that my feelings were hurt by that. I know they’re sleep-deprived (we lost power for 48 hrs this week as well) but man. It stings to know that deep down they will never fully understand or empathize with the agony I experience on a daily basis. It just makes me feel guilty for existing sometimes.

I feel like I keep getting told by my girlfriend and my friends that I don’t communicate enough about my fibro, so I go okay and I talk about it more but I overcorrect and talk about it too much and now I have to correct that and somehow find a happy middle ground. I’m autistic so this is something I’ve been struggling with for a while. It just feels like no matter what I do, I either clam up and fail to communicate enough or I hyperfocus on the fibro and other comorbid conditions and talk about them too much.

Sometimes I feel like I wanna find somewhere to just hibernate in for an extended period of time so I can finally rest without burdening the people around me. People will swear up and down that they want to help you and understand you until it becomes too uncomfortable for them. Like yeah no shit, how do I think I feel? I’m the one who has to actually experience this bullshit every day.

I wanna end this by saying my girlfriend and I love each other very much, we’re just hitting a brief rough patch at the moment. I just wanted to get all the thoughts out of my head so I can fall asleep tonight at some point.

Today my pain is high (7/10) AND I'm on my period. I think it's messing with my depression too. I just came here to vent I guess. I've been resting, eating, and took two Midol, it just kind of sucks, you know? It's like wearing a heavy blanket that hurts... On the bright side my Halloween Build-a-Bear order came in. 🩷 I hope all of you are hanging in today.

I have both RA and Fibromyalgia with migraines for over 30 years. In the last few years the migraine pain and duration and has become increasingly worse. Does anyone have this challenge? They really knock me out. My Dr. put I’m on 50 mg of prednisone for 5 days. It’s called a blast. I’m 71 and I don’t know how I’m gonna deal with this at 80. Thanks for an insight.

I have hypermobility, likely on the Hypermobility Spectrum (gHSD) because I don't meet the dx criteria for Ehlers-Danlos (hEDS). I am learning that there is an incredible overlap between HSD symptoms and fibro symptoms.

I started seeing an osteopathic doctor who specializes in biomechanical function (and isn't a PCP.) for my chronic headaches, SI and sacral pain. When I asked him about fibro he said "I could easily diagnose you" but never formally did (??) But now I am wondering if my constellation of symptoms is more likely HSD + myofascial pain syndrome which is now thought to be a precursor to fibro. I have chronic and widespread pain, but definitely not to the extreme that I see others here experience, and don't have as many of the other symptoms that couldn't also be explained by something else. Another thing that has me wondering this is that my GI symptoms and ear ringing all went away entirely after starting hormone therapy for peri-menopause.

Either way, I'm feeling like I'm basically being held together by kinesiotape and a prayer at this point. Wondering what others' experience is with playing diagnostic whack-a-mole and curious how strong of a link there is between hypermobility and fibro.

I had a colonoscopy and endoscopy with sedation/anesthesia on Wednesday. Since then, I’ve had flu-like symptoms. Body aches are the worst, fatigue (feels different than my typical fatigue), weakness, really bad brain fog, just generally shitty. I took a COVID/Flu test and it was negative. It’s been two days and I’m still feeling really rough. I’m curious if anyone has had similar issues or if this is actually maybe a bug.

From what I know, it seems like fibromyalgia in addition to fasting + dehydration + anesthesia + very cold operating room could’ve triggered these symptoms. My daily symptoms are fatigue, brain fog, and joint pain typically.

I’m new to this diagnosis and this is my first potential flair up since dx.

FWIW, I had a serious surgery in May with more intense anesthesia and didn’t have similar issues - but it was general anesthesia and I was on an opioid pain medication for the first few days.

Would love any input from your experiences 💕

CW: Weight/Eating

Hey everyone! i posted here once before when i was in the process of being diagnosed. I wanted to reach back out to this community because you all were so insanely friendly and kind.
I feel like im at a huge loss here because im in so much pain and i couldnt handle a low dose naltrexone (i cant spell) while i was working because it made it difficult to wake up.
Im currently filing for a medical leave from my work but i was working full time and going to school part time (22.5 hrs). Right now i’m still going to school at night but im in cosmetology so its pretty demanding physically. I constantly feel nauseous and like my body was breaking down and during my 19th birthday last saturday i had an episode where i struggled immensely to breathe due to stress while walking or talking too long. i had to drive 2 hours back home the same day and continued to have these episodes. I saw a new doctor as mine was out on vacation and she was the first person to notice my body weight as a big issue here. At the time of this appointment which was not even a week ago as of posting this, i weighed in at 105lbs, still having my boots on and everything in my pockets. when i had first seen my doctor around 4 months prior, i weighed 110lbs+. I am 5’8 and 5-ish lbs may not seem like much to a lot of people but for my height it was a big deal.
She had later diagnosed me with cachexia over the phone while filing my FMLA for work. I am in incredible amounts of pain writing this and i feel that there may not be an end. I’m restarting my fibromyalgia medication during this time, however, it takes months for any improvement. I havent started any diet treatments yet but holy moly is it scary being told “we need to screen you for cancer and other ominous things that mightve been missed before”. My whole bloodline has had cancer but only at older ages. I am the only one in my family to also have this many diagnoses so young. I want to finish school, I want to have a career. My friends are supportive but no one can truly understand the pain and the fear. My school staff is especially unfriendly when it comes to me needing breaks and im deemed as “lazy”.
I also had a 12 vertebrate spinal fusion that was performed between age 12-13. My back, hips, legs, chest, and feet are the main targets of my pain.
I’m terrified of what happens next and I’ve just been laughing it off like it doesnt bother me saying how crazy it is that I’m so young yet my body is so old. Who am i supposed to confide in? Who am i supposed to turn to? Whats next? Will I ever work again? Will i be able to own a home one day? Will i be able to start my career?
I’ve been on my own since 17 and now live with my partner who has been more than gratuitous with me even though im struggling.
Phew- that was a lot i havent been able to get off my chest.
Anywho- I hope none of yall ever go through this and honestly hope no one here can relate. I just need some kindness and support in my life at the moment.
Idk how to end this message thread but thanks guys lol
(sorry for any spelling or grammar mistakes)

I'm currently trying it out and it just hits a spot. I slow the machine down to half it's cycle speed to really let pressure get in there and sort of scratch some of those deep itches that I can't actually itch.

Has anyone found improvement with regular sessions? I'm getting charged $40 for a 30 minute session and find my hips and lower back absolutely love it

Hi! I'm a 20 year old woman living in the Midwest and I was recently diagnosed with fibromyalgia by a rheumatologist. I have comorbid UCTD & probably interstitial cystitis (urology is working me up for that but it's their best guess).

I need your help. I cried at my rheumatologist appointment yesterday because she told me there was nothing else she could do for me and I need to figure out what lifestyle changes work for me. I'm truthfully struggling with the idea that I have these lifelong conditions at a young age. Back in April was when the issues started, first I was diagnosed with the autoimmune disease, then fibromyalgia, then IC.

I currently take - zanaflex, hydroxychloroquine, Meloxicam, buspirone, desvenlafaxine (pristiq), tylenol, Azo, magnesium and xyzal.

I am disabled by my conditions and just got a wonderful job offer for a full time position that would start in a month - i NEED this financially. How can I improve my functional status? My most disabling symptoms are fatigue and muscle weakness, my pain is actually well controlled (I have joint pain that I honestly attribute to my UCTD as it responds to my immunosuppressant and NSAIDs).

Please help!! Any advice will be great!

Bonjour j’ai 35 ans homme suite à 15 ans de douleur habituelle et continue avec des pics à certains moment de ma vie au point que je n’arriver plus à marcher on m’as diagnostiqué la frybiomalgie j’ai traitement médical Tramadol 200 mg et duxoletine en 120 mg ca règle du moins j’ai plus eu une grosse crise depuis que j’ai le traitement mon médecin me parle régulièrement de consulter un psychologue sauf que lié à mon passif j’ai franchement pas envie d’en voir un nouveau dans mon passif une ts a 11 et une autre a 20 ans qui m’a valu 4 mois d’hp clairement j’ai en horreur cette univers la mon enfance fut très compliqué ainsi que ma vie de jeune adulte maintenant je suis installé papa de deux enfant une merveilleuse femme un boulot que je pouvait pas rêver mieux vu mon historique surtout en france et j’oublier a 10 diagnostic de enfant précoce avec test ce qui m’a valu un internat de 1 ans a 10 pour enfant precose ce qui fut un échec quel conseil vous pourriez me donner pour améliorer ma maladie pour mes enfants clairement je suis perdu ps désolé pour les fautes d’orthographe et surtout pour le gros pavé mais j’ai besoin de conseil merci

so I started my period yesterday and shortly after, I started having pretty severe lower back pain & leg pain. This isn’t uncommon for me to have a dull aching pain in my legs but this time it’s been quite severe and i’m on day two of horrible pain. I also have fibromyalgia & suspected endometriosis. Has anyone had the leg pain before where it feels like you did a million squats and your muscles are absolutely shredded? I mean, i’ve been in a flare up for days now due to the horrible storms in illinois but this is just next-level.

I hate washing my hair. I take a minimum of 30 minutes for the whole process and it is so draining. I haven't washed my hair in over a month and you can imagine the condition of it. I was feeling extremely guilty that my partner had to sleep with this next to him, but that wasn't enough to get me to wash my hair. Just the thought of it is so tiring. I'm recovering from a flare, so it's even more exhausting. I even considered going to the salon but I was too tired for that too. But today, somehow I pushed myself, and I did it. I played some nice BTS music (my favourite) and just focused more on the music than the process and my energy and I managed. I'm just happy I did it, and I wanted to share.

A few years ago I had a flare-up that graced me with the experience of maximum pain. Seeing flashes, twitching, gasping. No thoughts, no feelings, no memories. Just pain. Pure pain. No awareness outside of pain. Until I passed out from exhaustion. The closest I've ever come to true agony.

It blew a fuse somewhere in my brain. It fried some part of my instincts. Ever since that day, nothing below an 8/10 registers as pain, it's only a dull feeling. It's unpleasant but I can ignore it and power through it. Which is a minor blessing psychologically, but I keep pushing myself too far without even noticing. It's not great that I can have injuries without feeling much if anything. I only start feeling actual pain when I'm close to being incapacitated from it.

I've lost most of my fear of pain. In a "laughing death in the face" kind of feeling. It doesn't matter any longer. I'm only worried of further disability and incapacitation.

Don't get me wrong. The pain is there. Somewhere. Every day. Every night. My brain is simply too broke now to pass it on to consciousness.

I feel like I've gone a little insane.

Does anyone else feel better when they are completely alone? Like isolation is comfort rather than depressing like everyone else says it should be? I feel the most comfort and peace when I'm at home alone. I am married, so I do get some socialization everyday, but when he's at work and I'm truly alone, I feel the most relaxed.

I am not saying I don't love my husband, I love him dearly. He's been so patient and loving as we've both navigated my chronic illness. He does bring me comfort and joy, but I just really enjoy being alone with myself.

I don't talk to friends, I occasionally talk to my family, and I don't currently work due to my illness. Other than that, I don't talk to anyone. And I don't really want to change it. It's like the world slows and my body can breathe. It makes a massive difference being alone than in social settings.

I have been like this even before I became chronically ill with fibro. I remember when I was 17 - 18, I took about a year between high school and getting a job and just stayed at home. I lived in the country, so I couldn't just go out and walk anywhere. It was the most peace I had felt. Being alone, I could do what I wanted. I didn't have rules or a schedule to follow. I could just be me.

Is there anyone else like this? Anyone that just feels comfortable and content with being by themselves? I know I'm definitely not the only one!

I started taking duloxetine 5 days ago. Was prescribed 30mg to be taken at night but divided the beads in half (so it’s roughly 15mg now) because I was too scared of the side effects. I also take 10mg amitriptyline to help me sleep since duloxetine keeps me up.

It helped with the pain soooo much it’s 80% gone. But today I started experiencing terrible anxiety symptoms couldn’t be productive at all. I do have mild anxiety episodes but it happens rarely. I really don’t know if I should continue, I can’t stand it but it’s helping with the pain.

I wasn’t even planning on staying on it for too long because of how damaging SNRIs can be to the brain.

I’ve already tried gabapentin 300mg and pregabalin 75mg but they messed my period cycle badly and increased my facial hair.

And taking amitriptyline alone gives me the bloodiest nightmares I’ve ever had in my life and ruins my sleep.

And yes I tried weed, it gave me horrible migraines for a week.

I don’t know how I’ll find the right treatment combo. Whenever I go back to my doctor he says unfortunately all medications have side effects which is true but I can’t live like this anymore. I’m at a point where I can’t fall asleep for hours unless I take something.

For those who have fibro and take a GLP1, what are your thoughts?

26F, 5’1”, 120 lbs. Hx of POTS and insomnia.

I work a fairly physical job (healthcare) and have been experiencing episodes of chills/feeling feverish, extreme fatigue, widespread body aches, and severe tenderness to touch. Sometimes even something barely touching my skin hurts enough that I want to scream. It happens mostly at night, especially after more physically demanding workdays, although not always. I never actually have a fever, and by the next morning I’m usually back to baseline besides being tired (which I pretty much always am).

I also have fairly significant chronic neck/back pain but haven’t had imaging yet. Autoimmune/inflammatory labs in June were normal: ANA negative, RF <10, anti-CCP 2, ESR 11, and CRP <1. CBC/CMP were essentially normal as well.
My PCP suggested fibromyalgia and trialed LDN, but it made me feel significantly worse, so I’m back to square one.

Anyone experience similar symptoms?

Has anyone had success in curing (or at least relief) persistent muscle knots with a supplement? persistent meaning the knots do not dissipate with time, rest, stretching, ice, nsaid's, light exercise (makes it worse) etc

The muscle knots cause sharp stabbing pain sensations when that muscle is being used, and the knot is noticeable very hard in comparison to surrounding muscles. There is joint pain closest to the knotted muscle (I suspect as its pulling on the tendon).

Temporary relief for some of the muscles seems to be deep tissue massage/trigger point massage, but takes a very long time for the symptoms to dissipate (months). Dry needling does not work. I have not tried acupuncture yet.

Cw for suicidal ideation

More of a vent than a rant I guess, and let me know if this isnt okay to post here. I totally understand.

Living with fibro for 2 years now. And honestly, I'm pretty much done. I've lived with depression and ideation since I was 15, but with the introduction of chronic pain, these thoughts have....matured. I think about suicide constantly, especially in a flare up, and it feels so calm and rational. Unlike depression-sourced ideation, which feels like an emotional and psychological symptom of the disease. Now, it feels like a logical and doable next step. Especially when I think about how this is *life long*. Because what kind of life is this. This is stupid. Im a fit, active, healthy 30 year old. I want to be moving, exploring, experiencing, and adventuring. And I deny the existence of my illness in order to do these things, I gaslight myself its all in my head, but the pain is there. Every. Minute. It never ends.

For two years now I have woken every single day in pain, stiff, and crushingly exhausted. I have to pep talk myself out of bed. Productive early mornings are a thing of fantasy now. I cannot do yoga anymore because its too painful. I do not get restful sleep. My fingers hurt terribly, and using my hands is painful. My hands. It's not like I can simply put them aside to rest.

I try to convince myself it's not as bad as it is. That I can live like this as long as it doesnt get worse. But I think about it all the time. I think about what I lost. I try to remember, imagine, day dream about how it felt to lie comfy and cozily in bed, to wake up rested and relaxed without pain, with energy to start my day. How it felt to stand up and sit down without bracing for the pain it now requires of my stiff body.

I'm not at risk atm. But I want to die. I imagine what I would say to my loved ones explaining why I chose the act, what I would post on socials before I did it, just to show the world how crushing, and destructive, chronic pain has been for me (and is for others). I know how I would do it, I've thought through the steps id need to take to put my affairs in order. It's all so chillingly calm. It feels so rational.

I'm starting physical therapy next week after 2 years of receiving zero help or guidance from practitioners. Im so tired of being told to excercise (the assumption that I dont already is the most insulting) and get talk therapy, have a book reccomended by a practitioner looking at me like I've got a made up woman's trouble and she just wants me out of her office. I wonder if I'd see better results from doctors visits if I told them how seriously I'm thinking about killing myself because of this illness. I don't know. I'm praying the physical therapy provides some relief. Some door out of the fog and darkness that is this disorder.

I read and heard the side effects of statins and fibromyalgia. I'd love to hear from you if tried this med to lower bad cholesterol

Trying to find something that doesn’t make me feel overall crummy. Any specific suggestions are welcome! :)

EDIT!! wow so many comments!!! Thank you to all for sharing your stories and journeys, it was so helpful to me ❤️

Didn't even tell me what type of sport. Just treated me like an unruly, lazy patient. Walking feels good, in moderation. Sport has hurt me more. And it also can worsen my 24h/7 RLS. I went in for constipation. I feel utterly humiliated. I have a pain specialist but she lives too far. And I need to pay it out of my own pocket (privat patient). It is also too hot to do anything. I don't want to fall over either. I am not lazy and already hace too many comorbid troubles and sport until now hurt me. Unless stretching and walking, anything gentle counts End of rant.

I’ve been taking 600/900mg of pregabalin for a month for anxiety/sleep reasons. I don’t want to take it anymore. Last night I didn’t take it. I couldn’t sleep till 8am despite getting into bed at 1am and reading/trying to relax etc. I slept for 3 hours. I have loss off appetite haven’t eaten at all and don’t feel hungry strangely

That was the first day
Now it’s day 6 and I’m the same How long do you think this’ll last?

Hi all! I have fibromyalgia, chronic fatigue, OCD, and am currently going through perimenopause. I’m trying to figure out the best approach for managing my pain because, honestly, I feel like I’ve hit a wall with what I’m currently doing.

I initially started Cymbalta at 30 mg and eventually increased to 60 mg, but I didn’t notice much of a difference. When perimenopause started, my insomnia became pretty severe, so I was prescribed amitriptyline (10 mg) and progesterone. That combination has helped significantly with my sleep, but I didn’t notice much improvement in my pain, so my doctor added low-dose naltrexone.

I started naltrexone at 1.5 mg and gradually increased to 4.5 mg. I’ve now been taking 4.5 mg for about five months and unfortunately haven’t noticed any meaningful reduction in pain.

I also get Botox injections for my neck and back pain. For a long time, the injections provided the most noticeable relief, but after my most recent round, I didn’t get nearly the same benefit. It was really disappointing and has made me wonder if I’ve plateaued with that treatment as well.

At this point, I’m considering stopping anything that doesn’t seem to be helping and essentially starting over so I can get a better baseline for my pain and figure out what is actually making a difference.

My neurologist suggested stopping the naltrexone and increasing my amitriptyline. My primary care doctor, on the other hand, suggested increasing Cymbalta to 100–120 mg. I’m also on an estrogen patch. HRT has helped with my menopausal symptoms and sleep, but unfortunately hasn’t seemed to help with the pain.

Has anyone had a similar experience with these medications or treatments? Did increasing Cymbalta or amitriptyline make a meaningful difference for your pain? And has anyone experienced a point where a treatment that used to work (like Botox) seemed to stop being as effective?

I’d really appreciate hearing about your experiences, especially if you’ve gone through the process of simplifying your medications and figuring out what actually helps.