people could trade places with me for a day. I don't feel like anyone truly gets how bad this diagnosis is. And it shows ಠ_ಠ

sigh

Thank you for coming to my TedTalk😔

Like everyone else I was concerned about my Medicaid not getting renewed for 2027 due to the new work requirement.

This morning I spoke with my Social Services Caseworker and she renewed my SNAP and my Medicaid.

I can only do online surveys and I make $5 a day. She counted that as being Self Employed. She also documented that I was in the Appeals Stage for my SSDI. She was able to confirm with the SSA that I did have an open disability claim with the SSA.

I think the combination of do some work and seeing that I had the open disability claim is why my Medicaid was able to be renewed for 2027.

Just an FYI Social Services Caseworkers can electronically check with the SSA for an open disability claim and earned income. They can do the same with the IRS. You need to check the box on applications that gives them permission to check with SSA and IRS.

I hope this information is helpful to everyone who is on Medicaid and you are able to be renewed for 2027.

I have no idea how I would manage paying just for my prescriptions if I did not have Medicaid.

💜

I just want to go back to normal. I'm worried I'm gonna relapse. Sigh.

hi i am going crazy in this flare up and I need to feel like I can talk to people and fill this boredom.

I have been dealing with mysterious chronic pain and symptoms for the past year and a half. I have recently been diagnosed with POTS but my rheumatologist thinks there is more yet to be uncovered. I have had to switch to online school, which has put my pursuance of music completely on hold. I have had a very hard time with loneliness and difficulty relating to my friends since the onset of my illness. I am looking for friends in similar situations. Please message me if you are also dealing with this and are looking for online friends. I love to read, create music, and I’m not very internet savvy but I love Minecraft and understand that video games may be a means of connection on platforms like this. I am new to chronic illness and pain, so please reach out to me and help me find some friends because it has been a very hard time recently. Thank you for reading this

Question is how do I make the case with my doctor that I could really benefit from use of a wheelchair at work (I work in a very BIG buildings that require lots of walking on concrete floors). I am not looking to just sit all day but to relieve myself of a fibro flare later because Ive overexerted myself. I am worried because my doctor has twice told me new research states people with fibromyalgia need to move more.

I think he is going to shut down the conversation immediately but I need ways to convince him, which I know is ridiculous but most doctors are in the same boat of thinking.

Any suggestions???

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?

My neck and shoulder muscles are constantly tight and painful. I've been getting back in the gym recently and, unfortunately, building my neck and back muscles has just made that pain worse.

I've tried pill-form muscle relaxers but the side effects have been awful (and my insurance doesn't approve Tonmya at ALL), and taking a nonspecific, full-body muscle relaxer seems pointless when I only have a few specific muscles that are tight.

Has anyone else had this experience? What kind of topical cream works best for this symptom? I don't think inflammation-based creams would work, since inflammation isn't the problem (stuff like tiger balm, topical NSAIDS) but I am willing to be corrected. Is something like capsaicin or magnesium worth it? How about CBD or a compounded cream from a doctor with stuff like ketamine and gabapentinoids?

Thank you so much!

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

How do you manage the cumulative muscle fatigue that happens when weightlifting consistently?

I’ve been weightlifting on and off for the last three years, have a whole routine and work with a physical therapist. I like to hike and work as a barista. Obviously, I feel I’m fairly active as an individual.

But once I really start getting into the routine of working out and maybe throw in a hike during the week, I begin to experience muscle burning during my workouts or like an achiness or soreness that doesn’t go away. The only relief I’ve found so far is taking a week off. I try to drink enough water, get a decent amount of protein in, and magnesium has really improved my sleep quality. I feel it’s related to my fibro because it’s the same type of burning that I’ll get from taking a shower or putting on a sports bra when a flair gets really bad.

Any tips or tricks to help with this symptom?

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.

Anyone using a mobility scooter? I started higher education 4 weeks ago (F,35). And last week and this week I had a bad a flare, and I think it's due to how tiring it is to go to campus, for normal people (where I am from at least) 45min bus ride including changing bus is alright. For me it's hell. I can walk, get easley tired, on very bad days I can't walk at all, and get brain fog. On semi-bad days, it fysically not possible to get there on campus, but I don't have the fatigue and brainfog that much. I have a rollator but, to get on a bus and with my bag and laptop, it's way to heavy to carry all that. So would it be a good idea to use a mobility scooter? Thanks for tips

29F
My doctor is decent, but after every appt she will end with okay well you are a healthy young woman. I understand that I’m not in need of urgent treatment…but I wouldn’t describe my body as healthy…

Just bothers me.

She also said she doesn’t think that pain I described is nerve related but I have read that nerve pain is common with fibro

Hey, I have radial and heavy ulnar nerve pain. Been using Voltaren, actually helping or think it is at least, but NSAIDS can mess with my Lithium levels apparently. Nothing bad has ever happened to me because of all the ibuprofen over the years (Also stopped, now I get prescription chronic headache medication),but it could someday I guess?

So, alternative creams with no NSAIDs? Already use Bengay over upper body to sleep. The glamorous life I lead.

Asking because I'm thinking about increasing my lithium dose, because bad things have been happening the last week or so. Also seasonal change.

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.

I have unexplained extremely red inflamed palate and lower throat - it hurts to swallow and it sings constantly.

Does anyone have a clue what it could be and what could be done for it?

Doctor's just do not have answers.

Hi, first time posting and honestly a little out of my comfort zone but I don’t know what to do and could just do with some advice…

I (27M) work full time in a high school, my job can be quite cognitively demanding and sometimes physically demanding too. I got diagnosed with fibro 2ish years ago after hospital admissions and a year being unable to get out of bed except for several hospital appointments. I also got diagnosed with a heart arrhythmia, raynauds and hyper mobility.

I try my best to manage the symptoms and by that I mean I don’t do anything, I work, I get home I sleep and weekends are spent resting too because I can’t manage anything else. Despite that I still get really bad and very regular flare ups, for context I’ve had to take 50 days off work in the last year because I can’t get out of bed or I’m too fatigued that I’m basically falling asleep at work.
I applied for PIP support and got denied, I didn’t get a single point towards it because apparently it doesn’t impair my daily living although my quality of life is shockingly bad and honestly life is barely worth living.

Understandably, work is having to follow absence policy guidelines and I’m being monitored for my absences, I can’t reduce my hours because I live alone and can barely afford to live as it is. We’ve tried flexible hours but on a bad day I can’t barely manage 1-2 hours in work…
I don’t see family, I don’t see friends so it’s not like I’m making my symptoms worse by going out a lot.

I’m scared of losing my job because I can’t survive otherwise since I can’t receive any disability support. I feel real defeated and I just don’t know how I’m meant to function and survive in a world that isn’t built to support people with chronic illnesses or disabilities.

Does anyone have any advice on what to do about work? How to make it so I can continue working? What other financial support options I have? Or literally just anything so I don’t feel like life is gonna kick my ass and I’m going to fail at everything.

EDIT: I live in the UK if that makes any difference :)

Has anyone found lightweight headphones (over the ear) that don't hurt your head. I bought a pair that specifically said lightweight, but it felt like I had an anvil on my head.

you can see my post about what happened if you look at my account, but i’m curious to know others’ experience in the reporting process.

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

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

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 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. :)

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.)