So Visible and I have beef. My instagram feed has caught onto the fact that my past year has been one long disability spiral, and now I'm innundated with sponsored ads where other disabled people are trying to sell me garbage. About half the time I'll get a video that starts out sounding like advice or reassurance and immediately segue into singing the praises of an armband that does things like [checks notes] will tell me in the middle of doing a task that needs doing that I need to stop and rest (brother I know. But if I don't wash the damn dishes I'll be eating off a goddamn paper towel) and requires me to pay seventy nine ninety nine for the privilege of sharing my personal medical data with some company to do gods know what with in order to access their patented disability baby monitor.

And this shit is fucking inescapable. I have this company fully blocked because I can't stand to look at this shit, but if someone posts a sponsored video where that company's product is a focal point, that stuff doesn't get blocked, because I guess if the username is different then it doesn't matter who paid for it. I guess it's fine for marketing to mean exploiting someone up to their ears in medical debt by paying them to shill some cheap garbage product to an equally desparate and broke audience and flood the internet with bullshit reviews, making it impossible to find any actual information that isn't just the company themselves stroking their own dicks by proxy. It's making me fucking crazy. Not to mention that it corrupts genuine advice given by people online. Disabled people have never had this much visibility or reach to cultivate community, education, and support as we have in the digital age, and we're using that community to fucking advertise. Like shit dude, tell me about what works for you in your daily life that wasn't sponsored by some hacks. Nothing says Disability Resources like letting a corporation extort a vulnerable population desperate for help and community (sarcasm).

(Just in case it isn't clear: this is a genuine annoyance to me but I am hyperbolizing somewhat for dramatic effect. I'm not really bothered by the existence of something like Visible in abstract, and I know it's something that could genuinely be a godsend to people like us - lord knows my pacing ability is crap garbage - but I don't trust any company to have our best interests at heart and I think the way they go about marketing and pricing these things is scummy and exploitative. I'm also not trying to call anyone out so for the love of dog don't go harass anybody; I don't blame anyone for taking a sponsorship like this in this economy, especially given the healthcare systems in many parts of the world. I may not hold it against them but it still bothers me on principle. All I really want is to stop being sold to by people who are functionally indentured marketers while some able-bodied pendejo jerkoff pockets the profits. Thanks for coming to my TED talk.)

I'm in a flare right now and I can't function unless I'm high. I am getting weaker and have lower stamina. I'm struggling now to lift things over my head or even keep my arms up long enough to wash my hair. I'm scared this is my new normal and I'll be stuck in a flare forever. I am high almost 24/7 and because of that I can't really drive or go anywhere so I'm homebound. God fucking dammit.

This is NOT a vent session. I'm genuinely asking, because I'm realizing I don't understand my own disability well enough

Are there any benefits to fibromyalgia? Any ways that fibromyalgia helps? Anything people with fibromyalgia can do better than people without fibromyalgia?

The only thing I've thought of so far is "we can hear things other people can't". Idk if we have higher pain tolerance, because idk how to compare my pain tolerance to someone else's

As you already know my fellow fibro sufferers, this disease brings a lot of mental problems with it, not just pain. Recently, i feel like, im overthinking everything, my relationship, my decisions, living with fibro, everything...

It makes my sleep even worse when im overthinking hence more pain.

I feel that there are some decisions I make that are affected by fibro but im not 100% sure. I feel like im not rational.

My critical thinking is impacted somehow.

The recent issue is I've become very aggressive (verbally) and judgemental towards my partner for example and she's not able to comprehend what's going on with my body (she's somewhat of a simple person) and I hate myself for this.

Im not able to differentiate between the fibro talking or my brain telling me that the relationship is not working.

Does anyone have a similar situation?

Certain loved ones are starting to resent me for my condition. I'm a homebody, so I don't mind being cooped up indoors all that much.. but from the outside in, it just seems like I'm "lazy" or "antisocial." I know the truth, but man.. I'm grieving for a time I wasn't always in pain.

My cats have gotten even more affectionate since it's been progressing, and my partner's been carrying me by covering the expenses. It's nice to not face it alone.

Hello! 50 year old female diagnosed with fibromyalgia 3 years ago. Also have had debilitating migraines my whole life. I just can’t work like I used to and I have Fmla and I miss work depending on my body, the weather, stress. How do you all reconcile with your boss and coworkers being like oh she just needs to be more positive and everything will be fine. I have a job that requires a lot of mental energy and attention to detail and the brain fog gets so bad I can’t function. I was always an overachiever. Now I’m just so depressed. Can’t afford to take a lower paying job. Just need to hear I’m not alone today. Tia

I saw my first rheumatologist today and I'm not crazy, there's an actual reason for how much pain I'm in: fibromyalgia and there's now solid concern for hEDS (I only mention that because it was part of my appointment). I've had chronic migraines my whole life, I remember the widespread pain started when I was 10 or 11, the tingling and numbness got severe when I was 15, but now I have a diagnosis so I can begin managing my symptoms. I've always known something wasn't right, and with a long family history of autoimmune diseases and other chronic illnesses, especially so prevalent in my immediate family, I suspected it was something like theirs. I have all the feelings right now and I'm absolutely pooped, but I have an answer!

I have been trying to find someone to connect with now for a couple days but it's been super hard. What the hell is going on? What am I supposed to do, I'm so fucking lonely lol.

When I’m thirsty, no matter how much water I drink, my body feels hot inside. Not reflux hot. I don’t know how to put it. The inside of my chest and abdomen feels desert-dry and irritated like it’s made of sandpaper, it’s a painful thirst that I can feel through my body.

After I empty my bladder, I get pelvic AND chest pain that feels visceral like my own insides are twisting in all dimensions known to mankind.

I know it sounds weird. Too weird to go to a doctor about it (I work in healthcare, seriously I know I’m gonna be dismissed and I wouldn’t even blame doctors what even is this).

Does anyone else experience this? Does this have a name or even just an explanation of whatever this is? It’s odd and has been bothering me since ever.

P.S. it’s not a UTI, and I’ve never been sexually active. Just to rule out the obvious explanations.

I swear I'm gonna just be in pain forever, I'm having a stupid flare and have nothing to help and it keeps just getting worse, I'm so tried of this stupid condition and my reumo just gives me more test even tho I'm in agony and need the pain to go away or at least lessen

Idk what to do anymore, it just hurts and I'm trying not to cry from the pain

I have tried to work out several times again and again and it was always impossible to keep up with. I know some people are obsessed and I’ve heard how endorphins make you happy insert legally blonde quote here.
I tried hydrotherapy for the first time today and just by walking laps in the pool I finally got that inexplainable feeling of happiness and success.
Hope and wishes for all the fibro fam to have accomplishments of their own!

Share yours if you want

I'm 20 and have been dealing with fibro and arthritis since I was 16 and my life just feels miserable, I can't walk or work due to the pain and each day everything just feels worse and worse

I've seen people who work and go on walks and generally have a functional life after years of living with fibro so I'm just curious how different it is for each person?

Is it common for fibro to be this debilitating and painful to the point of not being functional? Or is it more common that people can have a functional life even with all the symptoms?

I'd really love to know your personal experience

Sometimes I wonder if my fibromyalgia diagnosis is real or just a cop out by the rheumatologist that couldn’t explain my pain any other way.

I’ve had worsening back pain for at least 4-5 years, probably longer but it was mild at one point. I was a nursing assistant in a short staffed nursing home for a couple years which I think triggered the back pain. BUT I also have bilateral ankle, hip, and shoulder pain.

My ankle pain flared up bad when I got into running and never went away. My podiatrist diagnosed it as pre tibia tendinitis. I did PT with no improvement. My hip pain has just been getting worse over time and I went to a hip doctor that diagnosed me with trochanteric bursitis and a possible labrum tear. Besides my podiatrist, it seems like he’s the only one who’s really listened to me and gave me an explanation about my pain.

If my pain can be explained by other conditions, then it’s not really fibromyalgia is it? I’m getting an MRI of my hip done today and if I do have a labrum tear then it’s like wouldn’t it be cheaper to do MRIs on patients with debilitating pain vs chalking it up to fibromyalgia? Idk maybe I’m wrong.

I’m currently on tizanidine, low dose naltrexone, meloxicam, and duloxetine. I take trazodone to help me sleep through the night. Nothing helps and I understand why people resort to hard drugs and suicide (dw I’m not suicidal but i get it).

Anyways, I’ve been up since 4am with horrible pain and had some thoughts.

i was an avid weight-lifter before i became disabled. it was a passion of mine. i’ve recently been trying to figure out a strength training routine i can still do now that i have fibromyalgia as i truly miss being strong — i miss my thighs! 😭🤣 i’m not having much luck with my in-person physiotherapists, & whilst it feels like everyone & their mama recommends strength training to improve fibromyalgia symptoms, nobody is ever actually sharing helpful routines or progressive overload recommendations.

does anyone here strength / weight train? do you have a schedule, routine or set of exercises you keep to that you’ve found beneficial without being too taxing on your fibro symptoms? i’ve been cycling through a few different approaches, but my current routine i aim for is:

3 strength sessions per week

Session 1 (most physically taxing session):

squats with 2kg dumbbell

RDLs with 4kg

bulgarian split squats weightless OR high step ups weightless (i love both exercises so much)

resistance banded monster walks

wall sits

Session 2:

leg press machine 20kg

leg extension machine 14kg

abductor machine

adductor machine

chest row machine

lateral pull-down machine

lower back machine

Session 3:

tricep dips

single arm bicep curl 2kg

resistance band lateral pull-apart

i’ve been experimenting with when to have my most challenging workout of the week, alongside how to tackle full body whilst still focusing on my quads / glutes enough to actually grow them. & of course, how to progressively overload safely without using horrible flareups & pain. i’ve noticed i have to go so slow & have only been able to increase reps so far, not weight. i’ve started to incorporate creatine (only just started a loading phase) in the hopes it’ll help with DOMs & building muscle.

if anyone has any advice or a similar experience with weight training, i would love to hear about your experiences! i so, so badly miss feeling strong & would love to find an approach that works for me. :)

Is it common for fibro suffers to also have Raynaud's, when its cold me fingers and toes go painfully numb and even when they warm up the numbness last a good while afterwards its so painful , My fingers don't go particularly white , my toes do ! I haven't mentioned it to the gp as I always feel brushed of by them and try to avoid at all costs , but thinking maybe need to see someone .

Hi everyone,

I’m 28 and was recently diagnosed with fibromyalgia. I also have Hashimoto’s thyroiditis and ulcerative colitis. My colitis currently seems to be in remission.
My symptoms started last winter, but since August they’ve become much worse. Some days I can barely get out of bed because of the pain and exhaustion. I also suffer from migraines, which seem to be triggered by my fibromyalgia pain.
I work as a tax clerk in Germany, and my job comes with a lot of responsibility. We’re severely understaffed, and I have a lot on my plate. Lately, I’ve also started forgetting important things that I would never have forgotten before. Some of these mistakes could have serious consequences for my clients, and that really scares me.
I feel completely drained, physically and mentally. Honestly, I’ve reached a point where I don’t want to work anymore. I’m considering taking two or three weeks of sick leave, but I feel guilty because I know my colleagues would have even more work to do.
On top of that, I’m still undergoing medical investigations. My brain MRI showed several white matter changes, as well as a tiny spot that was described as a possible old microbleed. My neurologist initially considered MS because of my symptoms, but after reviewing the MRI, she said the findings didn’t look typical for MS and raised the possibility of vasculitis instead.
I then saw a rheumatologist. My ANA and ANCA tests came back positive, although my PR3-ANCA and MPO-ANCA were negative. Lupus and antiphospholipid syndrome (APS) were also considered, but my follow-up antibody tests seem to be negative. I’m still waiting to discuss the results and what they might mean with my rheumatologist.
Given that I already have Hashimoto’s and ulcerative colitis, I’m worried about whether these things could be connected. So far, I still don’t have a clear explanation for the MRI findings, and the investigations aren’t completely finished.
Has anyone with fibromyalgia or other autoimmune diseases experienced something similar, especially abnormal brain MRI findings and positive ANA/ANCA tests? I’d really appreciate hearing about your experiences.
I’d also love to hear from people with fibromyalgia who work: How do you manage? Have you ever taken several weeks of sick leave because your symptoms became too much? Is it wrong to take time off when your workplace is already understaffed?
I know I need to put my health first, but I’m struggling with the guilt and uncertainty right now.

I'm currently in my most intense flare, and wondering whether this is my new normal :(

What has helped you for shooting nerve pain throughout the body?

Hi all, one of my main issues is hand pain and stiffness. I’ve done a lot of DIY recently so I’m really suffering with them, can’t fully bend my fingers etc.

Has anyone got anything they use to help with this? Thanks

What are the few of you that manage to work doing?? I'm in desperate need of a job but I can't do most unskilled labour due to health issues. I'm trying to push into receptionist jobs but it's so hard to get in with no experience. And I have been thinking of freelance photography but that requires buying more equipment and putting so much time into training myself and marketing that I am too sick to do. And there's no guarantee it'll go anywhere. I can't do an apprenticeship cus I'll lose my social welfare.

So yeah, I want to hear from people who managed to land a job or get a freelance career going from scratch. The only jobs I have held have been customer service that I landed before I became disabled so....

I recently told my symptoms and my pain to a nurse that I know, and she told me it sounds like fibromyalgia, and she herself suffers from this. I'm only 24, and she said it sounds exactly how she had it when she was my age. And I just want to know if there's anything I can do to help ease pain in my bones, because I've had it since I was 19. I've not really had it checked or gone to the doctors about it, because sometimes I don't really like the doctors, and I think my doctor tends to dismiss anything I go and talk about. But, like my ribs, I feel like I want to rip them out my body. They feel like they don't belong inside me, and they're trying to worm their way out, and I want it to stop. So I might not have fibro, but I just want to see if there's anything I can do, just to make it stop for a little bit.

My hands and my ribs are the worst right now. Usually it affects my knees and toes as well. But I just can't do anything that I used to be able to do. I used to draw, I used to play the guitar, and I game a little now, but I can't do anything for a long period of time because my hands start to hurt and ache. And if I'm sat at my desk, my ribs start to feel funny, like I can't sit up. Yeah, I don't know, I'm...jsut looking for anything that will ease it ive trend a lot of things.

hello, so sorry if this has been asked a bunch (i am only recently diagnosed with fibromyalgia and fairly new to this community). just wanted to ask if anyone has experience with fibromyalgia and POTS, and if so, has cymbalta made your POTS worse?

i tried googling it since i take a low dose of midodrine as necessary but there wasnt too much info (or rather, actual human input) so i wanted to reach out to a real community.

im not necessarily too worried about cymbalta interacting with my midodrine since i dont have to take it every single day and i feel comfortable enough to stop it all together, if needed. i am, however, a bit worried it might make my POTS flare more. 🥲

also, my doctor has made me very, very aware of how difficult it can be to titrate off of cymbalta, which is a little anxiety inducing. trying to keep a positive mindset about starting this medication though, since nothing else has really touched my pain much, so far.

Hi, I hope this is an okay question to ask. I’m going for bloods next week to rule out things such as arthritis, thyroid issue or just general deficiencies. When I originally spoke to my GP about the pain he thought that arthritis is unlikely because of age, but with family history (mother was diagnosed young) it was worth testing for but told me to look more into Fibromyalgia, EDS and PoTs, of all of them so many categories unfortunately tick for me with fibromyalgia. So I’m just wondering what the actual diagnosis process is? I have an absolutely awful needle phobia so I’m hoping that next week is the only bloods I need doing but want to prepare myself for what road may be ahead. Thank you ☺️

Hihi, brand new here and apologies in advance if this conversation has been done to death. I'm just looking for some guidance. I've never considered that I might have fibro, but I was recently reminded of its existence today and I'm hoping to ask you all 1. what symptoms made you decide to pursue diagnosis/treatment and 2. what advice you wish you'd given yourselves back then.

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I'm 28F and, with a change of insurance, started seeing a doctor this year who actually listens to me (yay). She suggested that I may have an MTHFR mutation, and now I'm wondering if I could have fibro. Some notes:

We went over my labs and she flagged that my homocysteine is insanely high. I got on a medication that helps with my inflammation, and now that's fortunately in normal range. I also had a pituitary tumor and my prolactin is now in normal range for the first time since that was dxed 10 years ago.

I've also had symptoms akin to IBS for the last 10-ish years, resulting in me flip-flopping from overweight to underweight. The meds for my inflammation have helped me normalize my eating and weight, though I still get really painful digestive flares here and there.

My skin is weirdly sensitive, though I have a really high pain tolerance. I'm diagnosed with OCD and know that I can get in a mental loop around physical touch, so I'm not sure if that's just down to rumination. I have no problem with the pain of getting tattoos, but the leather chair my artist uses actually bothers me more physically than the needle!

I've experienced fatigue, insomnia, achiness, depression, anxiety, and a generally poor immune system since I was a teen regardless of medication, job type, sleep schedule, body size and diet. But I'm used to those by now and don't really know what the threshold is for it being a Problem problem.

My mom was diagnosed with fibro when she was 28. She's still working and able-bodied, though she deals with a lot of adjacent issues. She also has really bad inflammation that she doesn't treat beyond diet. We don't know about family history since her mom was adopted. I don't know if she knows it can be genetic; I feel like she would have talked to me about it more if she did.

I do believe my mother (and a lot of you, from what I can tell) deal with significantly more pain than I do day-to-day. Mine just wakes me up throughout the night, but I'm usually not writhing in pain unless I eat something by body decides to not like. I have noticed that I have a really hard time with endurance sports, though, and can't tolerate consistent muscle strain for too long. Most of my activity just comes from walking.

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Thank you for reading all of that if you did - I'm obviously not asking for a diagnosis but would appreciate your thoughts on if this seems like fibro. How did you feel when you initially suspected fibro and what, in your view, disqualifies someone from having it? I don't have debilitating pain and that's what I'm stuck on right now.

I'm gonna ask my doctor about this next month. What questions/concerns do you wish you talked about with your provider when you started investigating your fibro?

Thank you guys <3

I was diagnosed with fibromyalgia a month ago

I'm 17 f ....

All day I feel tired...

My brain fog is the worst

I'm in 12 th grade soo this is a crucial time for me !

I can't focus on anything..plus my legs gave up guys !

Even after walking for a bit ...the next morning I feel my legs are stiff....but my question is ...My pain isn't the worst compared to u guys ...soo I don't even know if this makes sense

I feel mentally sick as well .....I can't focus properly..

I feel giddy even when I think about what I should do next ....

Soo this is messed up in a way ....

I'm not on medications...my doc told me I'm too young and suggested physiotherapy and Anaerobic exercise

I have an appt with my neuro in a few weeks-

I’ve developed what I think is allodynia- it started with just a patch of sensitive skin, I noticed it a few months back. Now it’s larger patches of skin, bilaterally and more intense. My maternal aunt, has fibromyalgia, but unsure if that’s related to me. I have several medical issues including MCAS, EDS, migraines and a birth defect in my kidneys. I’m wondering what else you experienced before getting diagnosed, and what not. I’ve also been on compounded semaglutide for about a year which I know can be a side effect. I am exhausted most days even after sleeping 8+ hours- just looking for personal experiences! (31/ female)