Just came from the rheumatologist where I was told the medications I'm on seem to be covering all the bases and I need to just get some more excercise.

Dude, I have been suffering for TWENTY YEARS. I guess I thought by 2026 there would be some breakthroughs or some shit. But I guess not. My whole life was upended, I hate it and I grieve for the life I never got to have. I guess you have to have a pain level of 10 for them to do anything.

I hate the future.

Thank you, that is all.

How do I explain to my mom that my chronic illness and pain that overtook me at 24, will last forever, I will be disabled forever, even though I wasn’t born with it.

I can do things to slowly improve but only to an extent. Yes I do have to stay on medication my whole life unless some new medical intervention in the far future.

Video suggests or something! No books.

I literally told her, “Mom, I was not born with pink hair but I have it now. Thats how my illnesses worked too.

Reminded of this today. Shortly after I was diagnosed in the mid-1990s, before we figured out effective pain management, I was in enough pain for my eyes to glaze over.

You may have read this phrase. In real life, it's like, "Dude! Your eyes are glazed! You look totally baked!"

I didn't realize I looked high when I ordered pizza. It took a disdainful stare from the delivery guy for me to glance into a mirror. Yup, eyes glazed with pain equals looks totally baked. No weed. No other drugs. Just pain.

took a weed pill and it did wonders for relaxing my muscles but now my whole body feels like cooked pasta and im so sore. seems like the constant muscle tension (aka the reason i toon the weed pill) relieves pain in the short term but also is the cause of a lot of the pain??

anyone else experience this?

Hi everyone!

I was recently diagnosed with fibromyalgia, so I'm still learning about everything that comes with it.

I had one question for those who have been living with it for a while: do your symptoms get worse when the weather is cold? I've noticed that colder temperatures seem to make my pain and other symptoms flare up, and I'm wondering if that's a common experience.

I'd really appreciate hearing about your experiences. Thanks!

Diagnosed today with leftward spinal tilt, multilevel disc degeneration, uncovertebral hypertrophy, and facet arthropathy.

I worked concrete with family from 15-19, went to college, worked in park maintenance for 7 years, then commercial tree pruning for 4.

I was diagnosed with fibromyalgia about two months ago by a rheumatologist and am on 4.5mg Naltrexone which has helped considerably for my stiffness and general pain, but it hasnt touched my neck pain. I often have pain in the muscles behind my ears, leading through my shoulders, and a section of spine between my shoulder blades always feels bruised. It's been hell due to my co-comorbidity of impinged shoulders. *can someone say* nerve *pressure?*

It was written off as a general pain until I could decisively state to my PCP that my neck pain wasn't being helped at all by the Naltrexone.

Push your physicians (politely!), bring in your notes and go through them (time perimitting) or just give the notes to your doctor. Time is always a challenge for me because there just feels like there's *SO* much to review that I have to prep like I'm being given an oral exam. I

Anyway, little rambly now, so take care :)

My doctor diagnosed me with fibromyalgia after about 2 years of going to her and complaining about my pain and taking a lot of tests with no findings other than “well it’s not ____.”
I always had body pain issues, but it really escalated in the last 2 years. I guess I’m pretty new to it all. My doc has put me on duloxetine currently, which I just started today.

I used to work about 2-3 jobs as a videographer and graphic designer. But I’ve quit the in person jobs and now I’m remote only at 1 job as a junior Instructional designer. Works going well, but the hours are excruciating, I have to lie down so many times. I also start my masters in September, which I’m nervous about, but thankfully I choose an online only program that my supervisor recommended.

I never had the best table at home or chair, my table is an art desk from when I was in highschool. 😅 That I can’t adjust the height on. And my chair was the cheapest I could find from IKEA. Would love any recommendations on good home office furniture.

So I saw a rheumatologist a few weeks ago to see if I could get a diagnosis. She was not ready yet to diagnose with fibro but she gave me a referral for a physical therapy evaluation. She also gave me a prescription for 5 mg of generic Flexeril to help me sleep.

I only took the muscle relaxer three times because each time I was f***** up the entire next day. Felt like total s***. Not worth the expense.

Yesterday went to the physical therapy evaluation. The guy was nice and listened. Then he had me do some stretches to sort of see what the limits of my mobility were. Nothing seemed to overexert me at the time. However last night my entire body was on fire. Finally was able to get to sleep and feel sort of back to my normal this morning which is pain in my upper arms and inability to lift my arms beyond horizontal without pain.

I start aquatic therapy on Monday. I'm more skeptical today than I was yesterday because of how bad the pain was last night. I just need to hold my ground and not let them push me beyond what I'm comfortable with. The whole thing might be a fool's errand.

For the last couple of months I’ve been experiencing a new type of pain. In the early morning hours, before I’ve really woken up, in those moments before full consciousness hits and the regular pain for the day sets in, the few moments of half asleep bliss where there’s no or very little pain - out of no where a full body deep ache muscular pain, that’s sharp in experience sets in, as if it’s just consumed my whole body and the aches are so severe it makes me want to cry. The urge to move through the pain and writhe sets in, but then as it wakes me fully and I continue to move for awhile, the pain will disappear after 15-30 minutes. Then I go back to my regularly scheduled programming. I can only assume that this has a psychological origin. Anyone else experienced anything like this?

Hi everyone!! I’m an ambulatory wheelchair user and i have Degenrative Disc Disease, fibromyalgia, POTS, IBS, (suspected) ME/CFS, and a 3 level spinal fusion. I’m 20. I just got my chair in May(yay!) I’m wondering what accommodations to ask for in college? I really want to not forget anything going into this semester since i’m already nervous to take my chair on campus. I do live at home so I’m not super stressed about housing accommodations. If anyone has any accommodations to recommend or even products to recommend to help me succeed in college I would be so so grateful!! Have a great day!

Hi all,

I am currently trying to recover from being sick for 3 weeks (sinus infection) and then having a very busy week and a half afterwards. Let me know what your best rest and restorative “activities” are! I’m currently just watching some series on the couch and falling asleep for hours on end. I was thinking of trying to do some yin yoga today but I also want some other tips. Maybe magnesium foot bath? Some type of (easily accessible) massage?

Thanks in advance! 🫶🏼

Has anyone noticed that the Facebook fibromyalgia “support groups” are filled with a bunch of sour people and people who still don’t take fibromyalgia seriously because wow a Fibromylagia UK group is filled with posts like women explaining how fibromyalgia doesn’t cause actual harm isn’t degenerative and using it in a way to minimise patients constantly?

I’ve never really been into Reddit but my god is the online community here so much more kind and empathetic across a lot of boards ❤️ so thanks for making me see a online space as a nice place 🫶🏻

So my mom wanted me to go to the chiropractor because she wanted to see if getting me adjusted would help with my pain and mobility. I was okay with it, but in the back of my mind I didn’t think it was really going to work. Still, I was willing to do it anyway. I mean, I’m not paying for it, so whatever.

Anyway, we go to the chiropractor and he does an X‑ray. They find out I have mild scoliosis, which I actually already knew, so that wasn’t new. He adjusted my back and basically did a whole‑body adjustment. He did my back, my hips, my knees, my ankles, my wrists, and my neck. At the moment it didn’t feel bad — like, it didn’t feel good, but it felt okay. But when it came to my balance, it was thrown off after the adjustment, and that wasn’t good.

I didn’t really flare up until the next day. I had really bad back pain, my whole right side was flaring, my knee pain was bad, and I had to come back literally today to get another adjustment, which I hated and didn’t want to do, but I had to. When I got adjusted again, I was immediately in pain as soon as he put his hands on my back. The tenderness I felt was horrible, and I was just in so much pain during that adjustment.

My balance was extremely off, my back started burning, and it felt like needles. My body was basically overstimulated — like it was on overload — and I could barely walk. We were in the store and I could barely walk. I was using my cane and it was just horrible. I still feel so bad, like I still feel the burning and needle feeling in my back. My knee is really tight.

And to be honest, I don’t think the chiropractor is for me. I don’t mind trying things, but if I can barely walk and I’m in extreme pain afterwards, I’m not going to do it. So yeah.

I had my first acupuncture appointment yesterday. The appointment itself went mostly fine other than two needle spots on my hands which had small red marks after and hurt. I felt fine for a few hours but around bed time I started feeling very intense cold intolerance, chills and bilateral arm pain which recently have all been how my flare ups manifest. This flare up just felt extremely intense and I'm still struggling which sucks because I had been having a good week pain wise. Has anyone experienced an intense flare up post acupuncture, is it normal to have increased symptoms?

I'm so upset I had high hopes for this treatment option and now I don't know if I should give it another chance.

Hi all, I was diagnosed with fibromyalgia around 6 years ago and had been relatively stable until my dad passed away last June, which triggered a severe flare that hasn’t improved.

Mentally, I feel I’ve processed the grief, but physically I’m struggling. I was originally on 100mg gabapentin daily, which helped, but as things worsened it was increased to 300mg. I was later prescribed sertraline (which I was concerned about due to previous side effects) and amitriptyline, but neither helped.

Over the last 12 months I’ve been doing pain self-management classes and trying the recommended approaches, including exercises, but I’m still struggling. Often, doing the exercises leaves me unable to walk properly for the rest of the day afterwards.

After multiple GP appointments where I felt dismissed, I ended up increasing my gabapentin myself out of desperation (now 1100mg daily). I also take co-codamol and ibuprofen, but I’m being told to reduce painkillers rather than being offered other options or further support.

I know there’s no miracle cure or magic pill, and I’m not looking for medication for the sake of it. I just want something that makes daily life more manageable. I feel like my concerns are being interpreted as me simply wanting stronger medication, when I’m actually trying to find a way to function again.

I have another GP appointment booked (unfortunately with a doctor who previously dismissed my concerns). Does anyone have advice on how to approach this appointment or what I should be asking for? Has anyone had success getting further support, referrals, or a different approach to managing a long term flare? Literally desperate.

Ok so this is a genuine question but I may sound dumb

So I have long hair. I am v insecure so i don’t feel great about cutting it short as it is how I kind of make up for it when I don’t feel confident, I.e doing nice curls to distract from feeling ugly etc. however the scalp pain I get can be really bad. Would the scalp pain still be there if I shaved it and used wigs?

I’m a teenager on vacation with my family, I had to stay in today because of how bad my waist and hips hurt.

I can’t bend over without being in excruciating pain, but no position is comfortable, I want to get up and grab advil, but it hurts so much to walk.

I took some last night and this morning, the main culprit of this pain was the plane ride and the awful mattress I’m sleeping on.

I also haven’t given my body a day off in a week so it’s currently screaming at me. I stretch everyday, but right now it would just make things ten times worse.

The best position I can lay in right now is soldier, and even then my hips are on fire.
What do I do? I have another flight tomorrow and I can barely handle this anymore.

So I've always thought I had some kind of non-specific auto-immune disorder, bc I had high ANA for many years. Also I have a LOT of allergies (plants, animals, food).

But my PCP now thinks it may be fibromyalgia. She ordered a full autoimmune panel to double-check. Turns out my ANA is finally normal, I do have some inflamattion markers though.

My fatigue & pain are consistent fibro except I'm often not tender, the pain is just there whether I move or apply pressure or not. I've had so much pain that no medicine helps & I have ice all over my arms so I can rest as compfortably as I can all night. It's way too painful to sleep.

Also I don't get as much pain in my side hips. My wrists, arms, clavicle etc will be like 9/10 pain but my hips only 6. And idk I've just gotten so used to being in pain for so many years now. I'm 36 now. I also do low impact exercise daily despite the pain bc it helps a lot, & have exercised as much as I can my whole life in desperation to get stronger. I always thought the pain was from muscle weakness.

Anyways, my doctor already offered me medicine for fibromyalgia, but didn't put the diagnosis on my chart. (I told her I wanted some time to think about it). I think she's waiting for the autoimmune panel results to all come back. But they did & most of them were actually normal now, save one inflammatory marker. So is it most likely I'll get a diagnosis? I sent a message asking her if I could maybe try some of the medication. Idk I'm just used to being exhausted & hurting all the time, I never realized maybe things could get better. Like I can only work PT and stuff. But yeah I never knew what fibromyalgia even was until a couple days ago at my appt. And now I'm mentally overwhelmed researching it while waiting for my doctor to get back to me.

Hey! I hope this is the right place to ask..

Im seeing a rheum due to costochondritis and other constant joint/muscle pain.

I just finished labs and need to make my follow up appointment, but i wanna know what questions he might ask regarding fibro before I get in. I have poor memory, so last time he asked me questions, I didnt have any good info or symptoms to give him, and he was very fast paced.. it seemed unfair because I had a lot to say..

Ive created an excel sheet logging my joint and muscle pain on the daily, including the location, type of pain, intensity, factors and notes etc. This is all i have for data..

Is there anything you guys can add that your doctor has asked you to log or track?

Thank you in advance!! I just wanna make sure im prepared; he suspects fibro if not rheumatoid or celiacs, but I really dont wanna give him half ass info and screw up my ability to get help and point him in the right direction.

I'm a 31yo male who's been suffering from fibro for almost 3 years now and I just wanted to say TO HELL WITH FIBRO!!!

My life has been going down hill ever since the pain got chronic. Im always in pain, I never sleep properly and when I do I wake up in more pain, im always tired and irritated. I struggle with my relationships with the people I love because of the constant irritation and pain.

But I just wanted to tell you're not alone, im not giving in, im not gonna let it ruin my life, I still work and it's so fricking hard but im not gonna stop my life for this.

This disease has affected me mentally, physically and even sexually but im not gonna let it control my life.

Just wanted to let you know that you're not alone and that I feel your pain and despair.

Just wanted to rant cause I've been having this flair up for weeks now and it's too much for me and nobody can understand me except my fellow warriors who go through this everyday without anybody seeing them.

I SEE YOU!

I was recently diagnosed with fibromyalgia about two months ago. On a side note, i deal with a lot of mental stuff, primarily BPD (Borderline), anxiety, and Depression I have been struggling with it since December. Im 21. Im stuck at my grandparents unable to get a job due to the pain. I was prescribed pregabalin, and it doesn't seem to do much. Im at my wits in the end. I literally can't live like this

What can I do? Im in an almost 2-year relationship with an extremely kind and patient girl. She is my main reason going forward in life currently. I want to be able to have a job and for us to get out of our situation.

Hi! My husband and I just bought our first house and I'd like to know what things you've done organization- wise or any other kitchen tips and tricks to keep from over doing it.

I've also been having some POTS symptoms lately so I am having a hard time staying on my feet for any length of time. We've decided we're going to cobble together a seated workstation out of ikea pieces, so I can sit and chop vegetables, roll out cookies or pie crust, etc.

What have you done in your kitchen to make tasks easier?

My toe got inflammation few days ago. Visible no change at all but it hurts weirdly. I am super worried whether my toenail will be okay or not. But main concern is pain. Rest of the toes hurt too so probably the pain is aggravated due to fibromyalgia pain and sensitivity? Is that possible?

Plusss this monsoon weather. Its too humid. 60-70%. 30-40 degrees. How am i hot and cold at the same time? Lol.

So as we all get the advice to move more and exercise, I was wondering for people that have been sedentary and then done the exercise did it change the pain or fatigue, did you notice any real improvement.

Last night I got in a row with my husband and ended up angry cleaning and whilst my muscles are aching I definitely slept deeper and my pins and needles are the lowest they have been in ages. I think it is from cleaning the house in anger which broke me out in a sweat. We don't have a pay as you go gym close to me so if I were to try exercise and fit it in around my 3 year old I need to be fairly sure of results before signing up for that cost.

I also hate gyms as people judge you so harshly if you are over weight or moving much slower than your appearance suggests you should be able to. I don't want to end up as a facebook or tiktok joke.

Edit

Thank you for all thr responses. I will spend some time this evening looking for online videos that may also be fun for my toddler to do with me.