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 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 went to a rheumatologist because I REALLY wanted an accurate diagnosis, but the doctor was so fucking arrogant. I'm Korean, and they talked down to me like I was stupid.

They told me fibromyalgia isn't something rheumatologists treat and that I should see a neurologist instead. They said the only thing they could do was a blood test.

Even the nurse who drew my blood made a negative comment about my veins. She said my veins kept "running away" because my tissue was too soft and I didn't have enough muscle.

I was hospitalized for a long time as a child because I was sick. Ever since then, my veins have been difficult to find. Is that a fucking crime too?

Sorry. I'm getting too negative.

The doctor also told me I needed to make sure I didn't have a mental health problem and told me to go to psychiatry and neurology.

...Ironically, the psychiatrist treated me with far more kindness and took my condition more seriously.

It's not that I became sick because of mental illness. If you've lived with chronic pain for this long, isn't it only natural that your mental health starts suffering too?

The blood test cost me around $75. In Korea, blood tests usually cost around $23 at most, even when they're considered expensive.

And now they want me to come back again.

I've already been to orthopedists, pain management specialists, and neurologists.

WHERE THE FUCK AM I SUPPOSED TO GO NOW? GODDAMN IT.

If rheumatologists don't treat fibromyalgia, then where the hell am I supposed to go?

I'm going to try to get an appointment at a university hospital.

So what am I supposed to do?

I'm just so tired of all this. One thing chronic pain has taught me is this: pain has no visible form, and people can never truly understand a pain they've never experienced themselves.

It's just so sad. 💔

i Also have scoliosis so this is extra double fun!

I'm okay but OWWWWW...

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 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.

Just as the title says. I can’t help but feel guilt and my anxiety and adrenaline are rushing through me as if I am doing something bad and I need to over explain myself. For context I am a sahm, I have an almost 5 year old, my husband works a demanding job (which we are so grateful for). I am constantly cleaning, I feel such guilt getting help but I know it’s going to help me be a better mom. It isn’t anything set in stone it’s a family member helping us just this month and maybe in the upcoming just once a month for extra help. My mom judges me so hard for it - she has a strong personality. She works from home and I brought my daughter and my dog over while we wait for pre-school drop off. I feel like I start to gaslight myself but I know how much work goes into cleaning the house and we aren’t messy people but a house is a home, you live in it. It gets messy. Idk I guess I just wish I could not feel so guilty and take a deep breathe and genuinely not give a sh*t about all the judgement. I just feel like for me, it is worth getting the help. I just can’t help having so much guilt.

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

Kinda need to just drop this somewhere for the sake of I have no one to talk about this and hopefully can get some advice. I was on nortryptiline for months but I was starting to get concerned at just how often I was getting heart palpitations on it that my doctor has started cross tapering me to duloxetine, I’m currently at 30mg but meant to increase to 60mg next week.

I just feel completely different in many different ways, I am yawning and my eyes are watering all the time? My pain generally is better but certainly still present which is good aside from the fact that I’ve been getting period-like cramps on and off for days (I’m nowhere near my cycle Rn) but emotionally I just feel kinda numb except for the need to feel something- literally anything. On top of that I realised pretty quickly that there’s certainly some sexual side effects going on, I cant climax at all which is just adding to the helplessness in not being able to feel much of anything right now.

Overall I just don’t feel like myself.

I didn’t realise how scary of a medication this was until after I started taking it because I was so desperate to get off nortryptiline I started cross tapering literally the next day after I got perscribed it but now I’m concerned to increase because it could make things better or way worse.

Anyway I just needed to let this out because I’m very much not a person to talk about these things (especially the sexual stuff) irl and i think it’s too early to talk to my doctor at least until I am fully just on one medication. If anyone has any hacks on helping with any of these side effects aside from changing medication (which I will be looking into if this continues) please let me know

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?

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?

No matter where I sit - my recliner in the living room or my desk chair in my office - my neck hurts like I’m holding it in a funny position. The pain is primarily on my right side.

I can’t figure out what is causing it, so I’m considering that it might be my fibromyalgia. Does anyone else experience this?

Around a month ago I made a post about Fibromyalgia and got deep into research. Seen here

People kept asking what they can do about it and the latest research.

So here it is, I hope it helps.

fibromyalgia research

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.

Hello folks. I just wanted to make anyone who isnt aware of floatation pods/sensory deprivation tanks. I had an hour float on sunday and for the first time in 11 months the pain subsided enough for me to get comfortable.

Being as this is a central nervous system issue my rationale for trying it was "if the system has nothing to process, it cant amp anything up to 11"

I know lots of you have tried everything but if you are new and havent tried it then its worth it. I have 2 more sessions booked already.

My husband can't get vaccinated due to a medical issue so I have to take it for the family. Since herd immunity is falling I feel I need to.

All that's left, at the moment, are Shingles and Covid and those scare me. The idea that I get a vaccine then I have to still spend a week in bed sick without the disease really stinks.

Any encouraging experiences? I was planning on getting one on Tuesday but have a thing to do Friday night. Is one better than the other to get as far as side effects? I read you can get them both at the same time but that's a big nope.

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.

for the past two months my left leg has been getting weaker. I did a nerve and muscle condition study which came out fine, so my neurologist suspects fibro (he requested an mri regardless). he said it’s not common for fibro to be one sided, but it’s possible.

other random symptoms that I’m hoping I’m not the only one with: sometimes my left leg gets intense pain, so I need to take two advil to make it shut up. sometimes my left shoulder aches. occasionally I'll have issues peeing where it's hard to start (and I had an episode of urinary retention I had to go to the ER for). my exhaustion isn’t that bad, I have POTS and I just feel extremely tired after walking around all day. I use a cane, helps with the POTS and recently has also been helping with my annoying leg. occasionally I’ll get annoying headaches.

I’ve been trying to increase my activity by walking more often, but nothing is changing except for the fact that my leg feels a bit weaker every week. and this week it’s randomly getting cold like it’s losing blood flow for a minute or something

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

I've been diagnosed since October of last year.

I have been going through some pretty bad stress and other things, and I've noticed sometimes I get more tired, have more sleep disturbances, and random achiness over my whole body.

Does anyone else deal with this, or something like this?

Hey all- I’m currently in conservative treatment (PT & physiatrist) for a shoulder SLAP tear that happened two months ago and had little response to a corticosteroid injection over a week ago.

I’m coming up on an appointment where I’ll likely be offered surgery to repair it. I have read that both pain relief but also recovery timelines (!) can be more difficult/longer with fibro. Meaning lengthier physical therapy and limited mobility.

For context, I’ve had numerous surgeries, including since my fibro diagnosis and probably multiple since it started (mostly abdominal/pelvic, but also breast and brain, both laparoscopic and open). I have never had orthopedic surgery though, with its particular set of recovery timelines and severe physical restrictions (like braces/completely immobilizing limbs).

I’m wondering about the experience of folks here who have had ortho surgery? Were your recovery timelines longer than predicted/general estimates? How much longer? Folks who had the option and didn’t: was your conservative treatment recovery timeline longer than orthos predicted? Really any info you wish you had beforehand or are happy you learned would be welcome!

When I'm hurting in the evening I usually take naproxen. I've noticed I've had to take some more often and I've brought this up to my PCP. She recommended extra strength Tylenol but that doesn't come close to relieving the pain. Any other recommendations?

does anyone have any yoga flows/stretches/exercise routines to help with feeling completely physically destroyed from working full time on my feet as a restaurant manager? (for what its worth i am always on the floor or behind the line, no sitting/chilling unless i get my mandatory 30) i am in so much pain after work to the point that i cannot stand straight or walk without debilitating back spasms. i used to do yoga twice weekly last fall/winter and this spring for college while i was only working weekends, which i felt was a giant help but still could have been better tailored to my specific physical needs. ive tried physical therapy before for the same problem but i didnt feel the exercises did much for me at all and they were mostly focused on my neck? which is nowhere near my issue right now.

for more info:
highest pain points are back(upper and lower), knees, ankles/feet, & shoulders. i also have comorbid hypermobility.

looking for stretches, muscle strength routines, anything that works for you guys in the service industry who are also fibro havers. TYIA <3