For context I’ve been very stressed the past month. I’ve been unemployed since May and have no health insurance. I have a side buissness that gets me some money but it’s not enough to pay the bills. This month I had to use my savings to help pay my bills and I have less than $100 in my account.

In the past month, my coordination has been horrible. Having a hard time balancing myself at times. I’m also not finishing sentences and muttering words when I speak. My whole body hurts especially my joints and I have tension headaches all the time. My fibro fog is so bad that I can’t remember anything right now. I forget text my girlfriend good night, I forget words, I forget names, I forget a lot of things. My ears have been hurting and I can’t hear as good.

My whole body has gone to crap right now and it feels like I’m legit dying. I’m trying hard to find a job but I just can’t get hired right now. So many interviews and nothing.

I’m so frustrated and done with this condition. This has ruined my life even more than I’m at the lowest points of my life.

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.

💜

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😔

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

Hello all! I’m hoping someone can give me a recommendation to buy or not buy a power recliner. I’m looking for something on the cheaper end, less than 1000 but the lower the better ideally. I will likely be spending a lot of time in it, including sleeping, so I want it to be comfortable and durable. Has anyone bought one of these “cheaper” chairs from Amazon or Walmart? Most of the ones on Amazon have heat and massage, which would be nice but only if it worked and didn’t take away from the comfort. I currently have a very comfortable lazyboy but I can’t put the foot rest down and it doesn’t lay quite flat enough for sleeping on a regular basis. Also I’m in Canada if that’s changes any brands or pricing. Thanks for any and all help and recommendations!

Hi! I have Fibromyalgia and Hashimotos and I was wondering if anyone out there has a good tool or device they use to track their symptoms. I’ve heard of the aura ring and fit but watch to track heart rate, blood o2, breathing, etc. and make connections to their symptoms through that. I’m basically trying to see if I have any physiologic signs that indicate a possible flare coming, etc. Please share any and all tips you guys use to track your symptoms and how you learned the connections between signs like heart rate and worsening or improving symptoms. Thank you!

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?

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???

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!

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.

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

My chronic illness journey started at 12 when I got my period. Id bleed for months at a time, I’m talking 3-4 months straight. Eventually I was diagnosed with stage 2 endometriosis and had surgery (at 20) which confirmed that. The surgeon removed all he could and I got better for a while but then I got worse 8 months after surgery when I got chlamydia, from my ex boyfriend of 3 years. That’s how I found out he was cheating on me.

For the last 5-6 years I’ve been dealing with debilitating pain. I go to a pain clinic which isn’t helpful. My first doctor there told me to do yoga and go on a diet. I switched to a different doctor at the same clinic. I used to get Ketamine and lidocaine infusions and the first one changed my life for 3 weeks I was almost pain free. Then they stopped working and I haven’t had one in a while. I’ve seen so many doctors and tried so many medications, I currently have a GP, an endometriosis specialists and 2 different pain specialists. And one of the pain specialist said “we’re scraping the bottom of the barrel for treatments and medications”

I do think I have fibromyalgia but I wonder if there is anything more. I remember being a kid and my parents would poke me, they were being silly, and I would tell them “the pain is lingering” and somebody poking me would hurt so bad and the pain would last for 20 to 30 seconds. But maybe something else is happening?

I’ve tried so many different medications. Currently I’m on pregabalin 150mg twice daily. I’ve tried ketamine infusions, a ganglion impair tap, and most recently trigger point injections. The trigger point injections were in my lower back and my lower abdomen and caused a massive flare up where I couldn’t walk or get out of bed. All I could do was hobble to the bathroom. That procedure caused me to need my daily opioid increased. Currently I take 24mg extended release hydro morphine every 12 hours. 4mg hydro morphine every 6 hours for breakthrough pain, and 12 Tylenol 3 a day. Before the trigger point injections I was on 18mg of the extended release but had to be increase due to the severe pain.

I recently had a head and spine MRI to rule out anything serious and was told I have rheumatoid arthritis in my lower back as well as narrowing of the nerves that go into my legs which could be causing pain. What other tests should I ask my doctors for? My legs are the biggest problem, they burn and tingle 24/7. I get electric shooting pain in my thighs and the amount of pain I’m in is often unbearable. Last year the pain got so bad my doctor made me take a month off to rest, and I have accommodations at work to not do anything strenuous.

I’m tired. I’m tried of feeling like this and wanting to give up because my whole body aches and hurts. I’m tired of surviving off opioids. I often feel hopeless and scared and cry to my partner. I often apologize to him for being a burden because he carry’s heavy things and rubs my legs all the time and I can’t function as I should. I’m mentally and emotionally drained. I’m scared something worse is wrong with me and I’ve seen so many doctors who brush me off. I’m also concerned about long term use of the pregabalin as I know it’s been linked to dementia. I honestly don’t care about the opioid use though. I’m fortunate to have a GP who has known me for 15 years and has seen me at my worst and is willing to prescribe pain controls. Id rather have a less in pain life and die sooner due to organ issues then to not have any opioids and be in 10/10 pain daily where all I can do is cry in bed.

Please, if anyone has any encouragement or recommendations of tests I should look into and ask my doctors I’m all ears. I really need help.

Any advice would help!

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.

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.

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?

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

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

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 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, 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.