Ok y’all so I filed for SSI in July 2023, got denied in October 2024, hired an attorney the next day, then nothing more until January 2026 when they denied me a 2nd time. My atty immediately filed for an administrative hearing, that was in February.

My atty has made hardship requests and SSI has ignored them. I’m verging on homelessness at this point and kinda on my last legs.

My atty/paralegal told me **yesterday** to google my congressional representative, fill out the form on their website, and tell them my SSI case is stuck, and that they could launch a congressional inquiry. Boy did they. I filled the form out Monday afternoon around 3 pm. I got an email at 715 pm Monday night saying that a formal investigation had been launched, and by 810 am today I had a hearing date!

Granted it’s not until 2/23/27, and I’m trying to see if that can be pulled up cause honestly I can’t wait that long, but I know there are others who filed about the same time I did. If you are in a similar situation it might be worth it to contact your rep, after all they are supposed to work for us, right?

ive been having a mini flare up but saw the sun setting outside and felt the intense need to go walk outside. i saw some cool halloween decorations, my favorite was an alien themed house, the weather was nice. a gnat flew in my mouth. im not sure why im posting this because it feels kind of like a nothing burger but i feel happy i was able to do something that felt normal for once.

yayyyy. owwww.

Really hate it 😒

So I was diagnosed back in may and put on nortryptiline over the summer but I didn’t get to see my GP again until a few weeks ago because I’m a uni student. I’ve been referred to physiotherapy but put on a waiting list months ago.

After it being clear that nortryptiline wasn’t working I spoke to my GP that I felt like I wasn’t getting any better he asked me what I think we should do next but I really have no idea how any of this works

Is this normal? I feel like it’s not absurd for me to expect my doctor to have at least a rough idea of the next steps I should be taking after diagnosis aside from medication. I just feel like there may be more that can be done because I was recently asked about if I had been referred to a pain management team, rheumatologist, etc. And that hasn’t even come up but I don’t know where to start or what I should or shouldn’t be doing. He’s moved me over to duloxetine now but I worry it’s just gonna be the same situation.

Hi, I am 31F and was just diagnosed with hEDS, fibromyalgia, and ankylosing spondylitis about 3 months ago. I tagged this as a question, but it's kind of a rant too. Please let me know if I need to re-flair.

At first it was a huge relief. After years of fighting, of being told my weight gain is the reason I am an ambulatory wheelchair user, that there was no explanation for my pain and no explanation as to why my joints routinely dislocate (once to the point of needing full reconstructive surgery in one of my legs), having an answer was lovely.

And my doctor is lovely! My PCP referred me to her (rheumatologist) after I asked about hEDS and tested positive using the Beighton score. My rheumatologist diagnosed me on our first appointment, ordered xrays of every joint and did more bloodwork than I've ever had run before. She immediately gave me a disability placard and put me on gabapentin the moment I asked. She wants me to do PT, specifically aquatherapy, but everyone near me is booked up so I'm on waiting lists at the moment.

Being taken seriously has brought me to tears multiple times. I'm sure anyone in this group understands the sentiment. And I don't mean to sound ungrateful.

But now I feel....stuck. There is so much misinformation out there, and I'm not quite sure how to word all the things that I want to ask to my doctor. Like...is this it? Do things just continue to deteriorate and cause this level of pain until I die? I'm already working with only meloxicam most days, because I can't take my gabapentin at work when I need it. What happens when even the gabapentin doesn't touch the pain anymore? I'm afraid of anything more hard-hitting.

I'm terrified to ask about any kind of partial disability benefits because of all the hoops my doctors in the past have made me jump through just to tell me I'm too young to be in pain. I'm afraid to let the mask slip, I think. Not being believed has done a number on me.

I thought I dealt with the grief of being disabled yesrs ago, when I first started to hit points where my legs would collapse from the pain and I had to start using a wheelchair on longer walks. But I somehow still have this mental block around listening to my body's limitations. I'm cosplaying being able bodied because my choices are to smile through it or let it consume me. I feel like I have no choice but to work a 40 hour work week that leaves me entirely bedridden for 3-4 days at a time after 1-3 days of work.

Are there options? Where do I even begin with this, besides FMLA?

Does anyone have any advice?

hi ive been recently diagnosed with fibromyalgia and its been a roller coaster. it has allowed me to be more at peace with my situation yet i think it has made me painfully aware of what is at stake. i am on indefinite sick leave from my job cus im no longer physically able to do it, simple day to day tasks absolutely exhaust me and my loved ones are concerned for me cus ive been taking more over the counter painkillers then i probably should be taking. (im desperate)

i feel very much disabled by my current state, and i worry how things will pan out in the future. i want to be a forest ranger, i want to work with the native flora and i want to help persevere the local wildlife.

i want to go out into the fields and forests, i want to traverse potentially cold weather and uneven ground and i want to be able to do what i love even when it feels like theres glass shards piercing my meniscus and like my hands and feet are on fire.

im an extremely stubborn person, and i dont think id ever fully be able to let go of this, i want this so badly, and yet today all i did was walk through an ikea and everything hurts and i never want to move again.

so what do i do? how can i manage my pain and fatigue so i can make this happen in the future? i can no longer handle my 27/hr week job of working in retail, so unfortunately there's a part of me that fears the worst. however i cannot imagine myself doing anything else but working closely with nature, so im hoping that there's ways to make it work.

Hey fibro besties

Which muscles relaxants have worked best for you?

So far I've experimented with ashwagandha as it is said to reduce muscle tension,

Also, orphenadrine+acetaminophen (a combo relatively famous where I live), cyclobenzaprine, tizanidine and ofc every flavor of NSAIDs there is

I am yet to try baclofen (aka lioresal), has anyone had any success with a particular med?

So I'm 19, and been having weird pain since November of last year. I'm also an out of state college student studying molecular genetics while trying not stress myself out on why I'm in pain. I technically got diagnosed in April with fibro, but it didn't sit right with me that my pcp diagnosed me after all my blood work was negative and she didn't try to delve any deeper into it than that. (Also she diagnosed me before the pain had been constant for even a month which I found odd given the resources she gave me) She did though agree to me getting a second opinion from a rheumatologist and a neurologist. The first place she referred me to wouldn't even take me for a 2nd opinion because they don't treat fibro. Then my mom tells me about the rheumatologist she used to see and the first available appointment they have (this is in either late May or early June) is August 21st, 5 days before I'm planning on heading back to school for the next semester. Luckily, I'm able to see the neurologist before hand and she thinks that it is definitely a neurology problem, not related to fibro whatsoever. Cool, doesn't have answers but at least orders more testing in the form of an MRI. The MRI shows up normal (yay but fuck what now), so she tells me that I should find a neurologist near my school and get an EMG. Soon after that I finally have the rheumatologist appointment and the guy is kind of a jerk, but he pokes around on me and decides it's most definitely fibromyalgia nothing nerve related and all my symptoms can be pinpointed back to this. He tells me I have all 18 pain points, gives me a piece of paper with a website on it and sends me on my merry way because he also doesn't treat fibromyalgia (at least not anymore).

So at this point I'm so confused and I just want answers and to be out of pain because nothing I have tried has helped. I've done PT, occupational therapy, heat, cold, Epsom salts and I try to keep active, sleep well and eat healthy. I also keep connected with friends and have a therapist on campus but I'm still in almost constant pain and have no clear answers. And the neurologist near me is also kind of a jerk and he told me to push through it because "what will you do when you're 20?" He also told me that none of my symptoms are serious and are just annoying but he scheduled the EMG so I'll put up with it.

Sorry for how long this is, I'm just so tired and frustrated.

TLDR: Recently diagnosed, have dismissive doctors, do everything the doctors tell me to do yet I'm still in pain.

​

Hi everyone, I'm an 18-year-old girl diagnosed with arthritis and fibromyalgia. I'm 160 cm tall and weigh around 80 kg.

My doctor has advised me not to go to the gym, and exercising can be difficult because of my chronic pain and fatigue.

I've been feeling really insecure about my weight lately, and it's affecting my confidence. I genuinely want to improve my health, but I don't know where to start. I'm scared of making my pain worse by doing the wrong exercises, and I don't want to follow an extreme diet either.

For those who have arthritis, fibromyalgia, or similar conditions:

- How did you manage your weight without going to the gym?

- What kind of gentle physical activity worked for you?

- How did you approach food and nutrition without starving yourself?

- Is it possible to make progress while dealing with chronic pain and fatigue?

I'd really appreciate advice from people who've been through something similar. Please be kind. I'm genuinely struggling with this, and I just want to find a way forward. ❤️

Wanted to give an update on my journey. About maybe 3 months ago I decided to see a rheumatologist who was familiar with fibromyalgia. It was a good visit and she gave me a referral for a physical therapy and it's a blood work. Also told me I have osteo arthritis.

I did aquatic therapy for about a month and now I need to join a gym that has a pool so I don't have to pay for the physical therapist.

Turns out my vitamin D was critically low at 18 and I am on a 50,000 unit dose of D2 weekly for 12 weeks. Been on it for about a month and I feel amazingly better. Like stupidly better. In my entire mental state is just lighter. Basically back to my normal self.

Went back to see the rheumatologist yesterday. Still have pain in my right shoulder and she just said well you have osteoarthritis. Not exactly encouraging.

She checked my joints and then we started talking about my shoulder. I told her the pain is not in the joint. She said the joint was really shallow, and all the muscles and such around there are part of the joint. My traps are super tight.

We talked about massage which is going to be my next step.

I'm recently diagnosed. Am also bipolar. My rheumatologist chose not to put me on the treatments usually prescribed first line for this citing those meds could trigger manic episodes. So the only thing she prescribed is Baclofen 10mg 2 times a day, and as y'all probably already know it does nothing.

The past 3 days I think I'm in a flare. The Allodynia is really bad. My entire body feels like I have a really bad sunburn. Soaking in a bath with Epsom salt hasn't worked. Lidocaine patches and topicals don't work. Cortisone cream doesn't work. Clothes hurt.

My entire body hurts like I got beat with a metal baseball bat. Even walking hurts.

Today I have a migraine. 650mg acetaminophen and an Advil liquid capsule aren't touching it.

I don't know what to do. I'm afraid to go to the hospital because I'm nearly certain my labs will come back normal, and imaging probably won't show anything either. I'm worried that the Drs will just think I'm drug seeking and not take me seriously.

Is going to the hospital ER worth the trip? What are your experiences? Should I go or do y'all have any suggestions that have worked for you that maybe I haven't thought of yet? I'm not seeking medical advice, just want to know how y'all deal with this.

Thank you in advance for your responses.

Here in Brazil, there’s a very strong stigma surrounding fibromyalgia within the medical community. Some doctors even call it the “Forbidden ICD” and discriminate against fibromyalgia patients by implying that they’re faking their symptoms or being overly dramatic, treating them with suspicion and as if they were drug addicts, and dismissing their suffering.

Thankfully, my fiancée hasn’t had to go through that yet, but the possibility makes her sad and afraid. To cheer her up, I usually tell her that, fortunately, those doctors with no ethics or integrity haven’t crossed paths with her yet. And when they do try to mistreat her and make her feel like a victim, I’ll tear the whole hospital down! That usually reassures her and makes her laugh, despite everything.

Wondering how much I (25 F) should warn my new partner (27 F) about dating someone with fibromyalgia. She knew about my fibro before we started romantically hanging out, so she has a kinda basic understanding of my pain and so thankfully I didn't have to warn her in general.

What I'm worried about is her not understanding the full implications of dating someone with fibromyalgia. We talked briefly about sex, which she said she is very willing to be adaptive so it's as painless as possible (I also like sex, just gotta be so careful 😭). I believe that she believes this, unfortunately my ex said similar things and it ended up being a problem. I understand I have to trust the process on that one.

So the thing is the required caretaking at times. When we started hanging out romantically, I really enjoyed performing acts of service because it is a way I like to show my affection. Unfortunately after beginning to do more of them I didn't notice it was increasing my pain. So I'm going to have to say that I can actually do less, which is insanely embarrassing. Long term dating someone with fibromyalgia requires a caretaking role at many times. How do I ask if she's willing to do that? How would I go about warning her that that's required? I understand that it's kind of going above and beyond. Again she probably thinks she's willing, but there's absolutely no way she understands how limited my functioning is. Right now I live with my parents and they do most of the cooking and cleaning. I only work part-time because of my pain as well so I have a very small income. Meaning long-term they probably have to be a financial provider as well. So basically I'm asking for so much, how do I warn a partner early on so that she doesn't get deeply emotionally invested and then learn these things?

Tldr: how to warn partner that dating a fibro girl requires being a caregiver, financial provider, and doing domestic labor. Or just half warn and let it happen? Idk how to proceed

My GP (who I am no longer a patient of bc he refuses to look into what’s wrong, won’t treat me and has told me I just need a psychotherapist) has repeatedly brought up fibromyalgia and that i should see a rheumatologist for all 3 appointments I had with him. He did blood work including inflammatory markers. I found a rheumatologist and asked to be referred and he said seeing one is pointless bc my inflammatory markers are normal so it can’t be fibro so he wouldn’t send a referral and I said “so what do I do about my constant pain (muscle, joint, nerve) and he asked if I tried 3 of the common fibro meds and when I said yes they didn’t help or I can’t take certain ones then he said my only option was to see a psychotherapist bc I’m “at the end of the road for treatment”. In that same appointment I brought up my fatigue and how doing anything can make me crash for anywhere up to 1-5 days and he goes “sounds like chronic fatigue syndrome/ fibromyalgia” AFTER HE SAID IT COULDNT BE FIBRO LIKE MAKE UP YOUR MIND. I cried bc I was frustrated and left then got a call that the referral was sent (I guess crying gets you the medical care you want). This was in August btw.

I called my GPs clinic last week to see if they had heard from the rheumatologist since I tried calling and was told it was denied and they wouldn’t tell me why other than it was denied on August 21. Turns out the rheumatologist doesn’t treat fibro and told my GP to send me to a pain clinic. This was never communicated to me and that pain clinic referral was never sent until October despite having that message since August 21. I just found out from the clinic that the second referral sent to a rheumatologist not a pain clinic and it was denied bc “symptoms don’t appear to be autoimmune or a rheumatology issue”. How can they say that when they haven’t seen me and assessed me themselves? Wtf is wrong with rheumatologists I thought they specialized in fibro? Are they not aware 70-90% of fibro patients have normal inflammatory markers like why are they all denying me and if it’s not a rheumatology issue then who tf am I supposed to see and why is this not being communicated with me it’s so frustrating!!!

Should I call the second rheumatologist and ask for clarification on why it was denied when you can absolutely have fibro without inflammatory markers. Like how am I supposed to get care when no one will see me and the people who are supposed to specialize in the condition won’t take those patients. Ontario healthcare is such utter BS

Since last week home from school, last week went 2 days to school. And since then so tired and no energy to go to campus.

This week still nog energy and I feel bad for my husband and children :( I am going to my gp this Thursday to see if it's the medications I am taking or something else.

Anyone having that symptom from fibromyalgia?

I live in one of those families that was always more like "slap some water on your face and get some sleep, you'll be fine" when it turned out to probably be a bone fracture.

So now that I'm going through Hell, my family is learning it might have been fibro this entire time and they doomed their children to incurable pain :)

My mom keeps asking me things to ask my doctor, and she and I are constantly talking about new stretches and stuff.

My dad, however, still is on the "being in pain is just part of being alive" side of the battle.

Hi all. I’ve just joined this community as my doctor seems to think I have fibromyalgia. I’ve been convinced for years I have EDS but that’s a whole other story. Yesterday he prescribed me duloxetine, and he wasn’t pushy or anything. Just seems to think it’s the best way to tackle many of my issues, and he even says that if it does it’s job and works well for me, I may even have an easier time doing some of the other things I’ve neglected as a result of fatigue, low energy, low mood, etc. I also have some depression and wicked anxiety so duloxetine does sound like a great place to start.
I gotta admit tho, I am scared. My husband is picking up my prescription today, so today will be day 1 for me. I was on an antidepressant/anti anxiety over a decade ago, and I think it put me into a mini psychosis of sorts? Idk, I lost my mind, felt like something else was controlling me and felt that I had no choice but to die. So I tried. Just like that. No thoughts like this before, and none since. Just about an hour of the most insane I’ve ever felt and it almost ended my life. I was hospitalized for 8 days after that, and have not been on any meds since. Now, I was heavily drinking at the time, and now I have been sober over 6 years. So I’m sure things will be different this time. I’m also older and have my life in order and have great support. But I’m still scared, nervous, unsure… I
also gaslight myself often and now I’m even wondering if I even have fibro. I ask myself if my pain is even ‘that bad’. I know my anxiety is nuts but even that feels more like OCD rumination, and my depression is mild. I still work a physical job, I see family and friends sometimes, I have a busy life. So I guess I feel like I’m not sick enough to be starting meds. But at the same time, I just want relief! I want to not be in pain every day of my life. I want to not be so irritable and miserable simply because I’m sick and tired and I don’t have space or energy for anyone else. This isn’t the true me, I just don’t even know who that is anymore because I think I’ve been going on fumes for so long.
Idk why I’m even posting this. I’m sorry it’s so all over the place. I have more to say but I will stop here. I’m just grateful communities like this one exist where I can rant and hopefully feel seen and understood. Honestly I’ve been feeling pretty isolated as of late, just knowing that for my whole life, no one has truly understood what I experience on a day to day basis. I do have support, but it also can feel lonely at times.

17 years old. Was dealing with what I thought was muscle pains caused by stress and anxiety for a while, turns out it wasn't.

Recently got diagnosed with fibromyalgia. My whole experience has been very abruptly onset and progressively worse over time. 6 months ago I was taking life for granted, now I'm sitting here typing this while bawling my eyes out wishing I could just sit without being in excruciating pain.

My pain settled in deep muscle aches in my legs and has made my life a miserable hell. I can barely sleep yet I'm always tired and flare-ups are unpredictable and nearly unbearable.

Three days ago I started getting a burning/pins and needles feeling in my arms. As of right now, it feels as if I have the worst sunburn I have ever had in my life all over my arms and chest. Every brush of fabric, touch, and little breeze stings so bad. Every position is painful and it's getting worse each day.

I've had to miss school days now which is just making my stress worse. I can barely get through a period without having to go to the bathroom because I feel like I'm going to throw up or just to cry.

I feel no hope for my future at all. I feel like I am being punished just for existing. I just want relief, just enough so I can get through a day without being in so much pain that I feel nauseous and exhausted.

A few days ago, I opened a new glass bottle of supplements. The top portion was broken, which I didn't notice when I bought it. I threw it away and went about getting my usual batch of supplements and meds ready when I noticed my right fingers had blood on them. Even then, I didn't feel any pain, so I didn't know what was bleeding. It wasn't until the small cut was under tap water that I felt the sting. After that, interacting with the wound caused pain.

I've been wondering why the hell I didn't feel any pain when I got cut. I must've gone a good 15 minutes without noticing I was getting blood on things. In my defense, I've been sick the past few days, so I was pretty out of it that day. Does fibromyalgia numb us to certain pain, even though it causes us pain daily?

Seen so many posts here. I just want you all to know I really feel seen after reading so much here. It’s not misery loves company. It’s just company thats comforting.

Thank you.

I’ve been suffering with the feeling like I have needles in my scalp for the past month and I’m already being treated with Lyrica, Klonopin and Trazadone. Just restarted LDN 4.5. Just wondering if anyone has found anything to help. I can’t sleep more than 4-5 hours at a time and it’s miserable.

Hello

I am 30 and was diagnosed with fibro over a year ago now with a year prior of symptoms.

I used to have some piercings, lip nose ears; tongue belly. Took them all out at 23.

In the last year I’ve decided to go and get things re pierced and add a few more. Also waiting on tattoo appointment. I always wanted to

The issue is every single piercing I’m having a problem with. Not healing right, piercing bumps, lumps under the skin. So slow in healing. The only thing different between years ago and now is literally fibromyalgia

But when I had my bloods done (admittedly a while ago) no inflammation markers came back.

Could this just be a weird situation? Is it fibro? Should I get another blood test?

I’m just confused and a bit annoyed

i Also have scoliosis so this is extra double fun!

I don't wanna be here anymore. Goddddd. It's my second week in a horrible flare up, my hands are sore, I need my hands to do EVERYTHING. I can't just not use them. And I'm so tired. My meds are not working, I took more and more and I just end up high and having panic attacks but the pain doesn't even get better. I'm drinking so that maybe I can have an hour or so of feeling mildly better but I know I'll feel worse tomorrow morning cus of it so yeah. I'm so tired. And I really do not wanna hear some stupid positive "life is worth living" advice, cus it really isn't. And it hasn't been for a good while and this is just the final straw in a long line of straws for the past few months. I really hope some of you guys are having a better time than I am.