One day I woke up fine and suddenly I started feeling heaviness in my chest and got anxious. Took WFH that day and went to a GP, he called ECG, lungs scan etc. All came out normal, and my doctor was clueless.

Suddenly I get panic attacks even when I am not stressed. Do you guys also get?

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.

I got a visible band for my birthday! I have fibro, dysautonomia, of course suspected me/cfs. I’m so excited! People that have one, what are your favorite features? How did it help?

My energy has come back a little since my doctor bumped up my iron (I have severe iron deficiency anemia & waiting on the referral to hematology to come through) and I thought I was just burnt out and avoiding my mom, but I realized I am doing it with everyone/everything!

The worst is my best friend.

October is a big month for me & I’m getting invited to all these things. Usually I always accept and my friends/family are understanding if I end up canceling because well, I have been “sick” since I was a teenager. But I found my self not even wanting to give them an answer. For example, my bestie is throwing a bday party and usually I am hyped and wouldn’t miss it for the world but this time I just hearted the invite. My mom keeps asking about Halloween with my daughter and I just keep saying IDK depends on the weather. My daughter’s aunts keep inviting us to decorate cookies and I’m like that sounds nice, we will see…

I am even doing it for stupid shit & things I really shouldn’t be! I needed to shower and I just sat in the bathroom and played around on my phone instead and then I skipped out on a follow up appointment for my eyes when I really wanted to try contacts and spent a lot of money on it. I noticed I am doing a lot of this and it reminds me of my friends with ADHD who get paralyzed when they’re overwhelmed. Like they know they need to do it, they’re standing there looking at whatever the task is and they just cannot. I’m not usually like this though!!

To be fair, my body is going through a lot and I just wanna check out and go lay around on a beach somewhere but that’s not realistic. I’m gonna fuck myself over if I don’t keep up on stuff and I don’t want to loose the precious friends I have because I can’t even be bothered to answer. I know they’ll shrug it off the first couple times but if it becomes a pattern I don’t blame them for stopping the invites. I want to get ahead of this before it gets that bad.

Any ideas/suggestions? Anything that helped get you through? I’m pretty sick of this whole wait and see thing because there is no magically get better in my future, you know? Ugh.

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.

I'm okay but OWWWWW...

Really hate it 😒

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 Also have scoliosis so this is extra double fun!

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 have been sick for a little over 4 years and finally got diagnosed this week with POT's and Fibromyalgia. I have a two degrees but can-t seem to find any work from home jobs. I currently work part time at a physical job and it is killing me. My degrees are in Human Services and Counseling but recently had to quit that field because of how unethical it was, personal things, etc. So, I would love a work from home job in the medical field or mental health field - human resources, billing, client intake, something, anything like that. And honestly I'm losing hope with being able to find somwthing work from home and just framing with the pain and fatigue is making me pretty depressed.

Does anyone know any good work from home places? I wouldn't even mind to send someone my resume here if they'd be willing to recommend me for a job. I feel guilty and insane even feeling frustrated I guess. Just a rant if anything.

Hi,

This is an EXTREMELY long post, so please bear with me. I've been on this rollercoaster for decades. Over the years, I've experienced severe flares (8-10 on the pain scale) following minor surgeries for things unrelated to fibro. These intense flares usually take a full two to three months to "unravel" and subside. Up until now, it's never happened that way for pushing through what was just the onset of a flare.

While it was still warm in August, I decided to steam cleaning my carpeting (without moving any furniture) using my lightweight upright. I paced myself, stretching out cleaning of the three bedrooms and hallway upstairs, one at a time resting for days in between.

By the time I was finishing the last room, the tender/trigger points in my right shoulder and neck started throbbing, and I pushed to finish the hallway thinking I'll deal with the usual flare-up. Rest a lot, and then start tackling the stairs and livingroom.

The flare in my shoulder was still manageable, but kept escalating no matter how much I rested, took my meds, and alternated doing all the remedies in my bag of fibro tricks.

It's been around 7 weeks now, and just as it did post surgeries, it seems to be in a hyper-flare up state. Since I'm right-handed, it's even harder to manage and is throbbing as I type.

Against my doctors initial advice, I went to a local pharmacy (where they're extremely helpful finding and fitting aids) to get a sling. I just needed to take the weight of my forearm off of my shoulder when I'm not laying down or sitting with it supported by pillows, but she was concerned about me getting frozen shoulder.

This isn't a standard sling, because we found that it's too painful to keep my arm at a 45° angle. What we came up with is comprised of a narrow strap with padding around the neck and a simple cuff to hang my wrist in. I do gentle pendulum exercises to keep my shoulder from stiffening up.

I'm writing this long-winded message to you today, because I'm struggling. Something as simple as raising my right arm to throw my hair in a scrunchie as I usually do, suddenly makes my fibro scream akin to what I imagine it'd feel like stabbing that tender point with a knife. So many weeks in and it's still tripping me up. It's traveling into my traps, my neck, and giving me headaches. I still can't lift anything, raise my arm, it's hard to dress, etc. I know there's gotta be a light at the end of this tunnel. I'm at a loss about how to get there.

Has anybody else experienced an unrelenting change in their fibro's behavior like this after so many years? Are there any things that you do to calm severe arm flare-up s?

My symptoms started my senior year of college. I recall struggling to get up the steps to my dorm. Then brain fog started hitting me. Made it harder to study and focus. My doctor thought I was drug seeking. Took 6 years before I was finally diagnosed and and got treatment

i am currently teaching english as a second language (mother tongue in my country is another one). i've been working with this on and off for about 8 years, but only now i am a half time teacher. my previous incomes were with research, and it was waay more flexible and mostly from home. now, i have to drive 30-60 minutes everyday to work. the class itself is the best part, i really love those kids. but i feel like i can't keep this job for much longer since i've been having flare ups quite frequently. idk if my boss really understands what fibromyalgia is like, especially because i am very good at looking normal even when i am in some pain. i work roughly 15 hours a week, and a full time job where i live is 40 hours a week. i just can't think of how people can work that much, because 15 hours a week seems to be my limit. when we have tests to correct and all that bureaucracy and i have to work more, it is a certain flare up and certain 100 messages from my boss telling me i have missed deadlines and i am going to get a formal warning (a needed requirement to fire people without further fees for the employer), and i feel like she is looking to fire me in the end of this semester. honestly, i wish i could just quit, but my work options seem to be really limited rn.

so what do you do for work? what works (lol) best for you? i am trying to go back into research, but idk if it's gonna be possible so soon.

I’ve been working at my current job for about three years and it has been working pretty well for me so far (it’s a receptionist job and I have space to take breaks from sitting and walk around when I need to). When I first started here I was hired as full time so I had health insurance as part of my benefits but my hours slowly decreased so I wasn’t always working full time hours (but I kept the benefits).

I went on a 6 month or so leave for school in Japan and while I was there I had so much trouble getting access to my medication since I could only bring a limited amount initially then wasn’t able to ship anything from home, so I basically was forced to go off all my meds. I don’t regret going to Japan cause I’m so grateful for the opportunity and honestly was having so many issues with getting proper healthcare anyways (typical terrible rheumatologist experience) but I was dropped from all my providers during the time I was gone so I’m basically starting over. It was the original plan to be added to my family insurance while i wasn’t working since I still live with my parents but they’ve gotten into a pretty rough financial situation and had to cancel it. I came back to my job about a month ago hoping to get insurance benefits but i’ve only been able to work part time.

I think I may be able to ask for full time hours since I know they like me here and I doubt they’d want me to leave for a different job (I also have a really hard time dealing with change so quitting would be rly difficult for me), but for reception me getting full time would only mean taking hours from my coworkers so I don’t really want to ask them to do that. If I were able to get more hours it would likely be in other areas like kitchen or housekeeping but I’m just not sure if I’d be able to manage a job that’s more physically demanding (I honestly don’t even know if I can manage working completely full time hours). I’m just not sure what to do since I can’t realistically keep going without any insurance or health care but even thinking about what to do for work is stressing me out so much. Even if I did decide to get a new job I don’t know if I’d be lucky enough to find something that meets my needs so well.

I’ve been trying to get advice from my friends/ family but I feel like most of them have this “just deal with it” mentality and don’t understand how exhausting and painful living with fibro is.

Any advice for jobs/ health care would be much appreciated, thanks for reading the rant

The pharmacy had an issue with my pregablin 225 mg. They were two days late. I already was in a pretty bad flareup, but once I didn't have my meds, it got sharply worse and now that I've gotten them and have taken them I'm starting to improve. It's frustrating but at least I know it's doing something.

I am military. I’m going through a required class this week. It is 8 hour days of sitting in a classroom setting in a chair, with very little breaks.

Yesterday, around 1 pm, my skin started vibrating/tingling from the overwhelm to my system and it wouldn’t stop until around 5pm when I was home and resting. I woke up feeling horrible this morning (to be expected). This class is an absolute requirement for me to get a medical separation/retirement in the future. They also said that if I miss anything more than a few minutes this week that I will have to retake the entire course. I’ve decided that I need to push through it and get it done, but I honestly have no clue how.

Any good recommendations to get through the week? Obviously I can’t use weed/CBD being military, and I’m on gabapentin 100mg, but it isn’t helping at that dose and if I increase then it makes me feel super sick from side effects.

Thank you guys for being such a great support system!

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 symptoms started when i was 12, it started with my stomach being upset constantly and constant stomach pain. i used to think i was just having growing pains as well but at 12 i wasnt growing anymore and it couldnt have been. over the years it progressed to widespread body pain, i always had trouble as a kid as i was always hurting myself very easily. when i was a kid my jaw would also sometimes just lock up completely if i yawned to big or move my jaw in a certain way and i couldnt close my jaw no matter how hard i tried it would hurt so bad. i broke my ankle and sprained my ankles just doing normal activities more than i can count, i also bruised very easy like a pear. im now 26 and im in so much pain constantly i call out for work more than i should. In the last year ive called out of work around 20 times just because of the pain. i have swollen lymph nodes that just randomly swell in my neck, base of skull, behind my ears, my armpits or my groin area. i have headaches and migraines, brain fog, some days its hard to even stand because i feel so stiff or my body just radiates with pain. i feel so sick and nauseous that its hard to eat most days, i have a spot on the top of my spine/back thats just been completely numb for years. its irritating because i cant feel anything in that area and if i touch it out it gets itchy i cant feel anything. im a very slow healer as well so if i get bruised or hurt it takes longer than a normal person would and im very prone to infections. i get dizzy and feel faint a lot just from standing or sitting up or while im walking and ill need to stabilize myself until i feel like i can walk without falling over. i have so much stomach issues as well, its hard to list every thing. i constantly feel cold or hot and its very hard to regulate my temperature. i feel so clumsy and disoriented some days that its hard to talk because i just stumble over my words. the thing is im not overly flexible like what eds is described as, i was more flexible as a young teenager than i am now, now i just feel so stiff and in pain that its hard to do anything that require flexibility. i just want some relief from the pain but i feel i cant get that until i know for sure. Has anyone else experiences this? does it seem like standard fibro or could there be something more to this?

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.

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.

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.

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.