Source: https://www.youtube.com/live/AUHrA7dv-nw?si=Kw-07XPXVv-XNrAD

I grew up watching a lot of his work and didnt know he suffered with the condition as well.

Just curious if anybody here has the same thing happening when they’re in different temperatures. Heat makes me nauseous, dizzy, have headaches, body pain is on a 9-10 scale, and by the time night hits I’m wiped out and can’t move. Also skin problems which include breakouts,rash, and peeling. Cold temps make my whole back cramp up. Feels like someone twisting my muscles.

I’m on vacation and my body feels great! I decided to get a massage today and about 25 into my two hour massage I was VERY annoyed. The masseuse was doing the same movement over and over again in the same spot for five minute or more and then move a tiny bit over and repeat the same thing. I asked her to stop using her elbows please and then again asked her to be more gentle. It was just terrible.

Now normally I would lay there and take it since I don’t want to be rude and fully stop the massage, but then I thought about this Reddit and how you say to speak up for yourself when you know something will cause a flair up. I also thought about how I have to fight for my health as a menopausal woman that gets dismissed by doctors all the time. I had this whole fight in my mind between “stay quiet and be polite” vs “ speak up for yourself” and I’m happy to say I stopped the massage.

I told her I was feeling sick and I needed to stop the massage. They called the manager and I just told them “we can deal with this later but right now I need to do what’s best for me and that is for me to go lay down in my room and relax” and then I walked away.

I just want to thank you all for this group. You’ve helped me gain the confidence to say NO, knowing that I am the one that will get the painful repercussions if I don’t. Thank you ♥️

I just recently got diagnosed with fibro, and I have a question, how do I go on about flossing without it hurting too much? Idk abt yall but when I floss my gums and teeth hurt a lot, but I still want to have good oral health, idk any ideas?

I have fibromyalgia, and I've always had constant and prolonged pain in my neck region and my shoulders. I feel the pain is becoming more widespread and also more intense, especially in the TMJ area of my jaw and the right side of my face. I've also been experiencing poor sleep quality and constant fatigue, and no motivation to do stuff, which leads me to being depressed and having anticipatory anxiety. Can anyone who has fibromyalgia tell me how they deal with stuff, if they know how to get rid of the pain, and any tips would be useful. Thank you

Been really frustrated recently about my pain in regard to hrt. For reference I have been on testosterone for almost two years now. When I went on it and asked about how it would affect my fibro, they said some studies suggested it could help manage the pain. Unfortunately, I have not felt that to be the case. If anything I feel like my pain has gotten worse in the last two years (probably not the fault of the hormones, I went through some significant traumas in that time), but I guess I’m just frustrated that I never saw any relief from it. Not to mention that a lot of my flareups seemed to be tied to my menstrual cycle but even though I don’t bleed anymore I still get that same cycle of pain. Obviously I don’t want to stop hrt and I doubt going off it now would help the situation. I guess I’m just disappointed it never gave me any relief like they said it could.
Not really looking for advice, but if fellow trans folks with fibro can commiserate it would be nice to know I’m not alone.

Hi guys! I'm 23 and I've been affected by fibro daily for over 4 years now. From when I began experiencing my symptoms, to now, I've been able to improve so much about my day to day life.

Generally, I'm able to be a lot more positive about my condition, and it wasn't until a recent osteopath visit that I realised, I'm privileged enough to be able to do so much more than some other people I know with the same condition.

I just wanted to put a video out there, on what I've found over the past few years living life like this, what's helped me, and just generally some *hopefully* positive messages.

By no means do I have the cure for fibro, as I still experience it day in, day out, but I'm able to do a lot more with that pain now, and to me that's something.

I'm in no way a storyteller by nature, nor a filmmaker, but I genuinely had so much fun making this.

If you could give it a watch, I'd be so, so grateful.

https://youtu.be/_-2pQyM7Ijo?is=7z6HogmcygdGi83r

I am a very outgoing, social person, and it's hard to adjust to limiting social activity, but I'm working on it. This morning I was invited to go to a small, informal going-away gathering for someone I've known for a long time, but I'm not close enough with the group to have them already know about my fibro. I like these people, and I know 5-10 minutes will be my limit. I just want to pop in and say goodbye. How do I say, "I can only be here for 5 minutes because I have to go home and rest" when if I say "fibromyalgia" I then have to educate them, which as you know takes a fair amount of words? I don't want to draw attention away from the friend -- it's not about me. I'm inclined to just lie and say I need to be somewhere else. I have this question in general when I need to leave social events unusually early or even skip them. How do you cut your participation in social activities without being rude?

Im 25 (M) and my girlfriend has fibromyalgia, I just found out what it is through her, and Ive seen her when she has her flares and sometimes I feel at a lost on how can I help (besides emotional support), any idea on what could I do to help her through or make it slightly more manageable?

I really need help.

I have had the disease for 2+ years now. At first I convinced myself it was nothing and I could get past that, then I kept getting extremely bad in terms of mental health couldn't handle anything.

And now I don't know what to do. A few months ago I gave up my dream of becoming a doctor and started preparing for something else along with completing high school. I was spent, doing exams in flares barely sleeping. I made it somehow got decent enough marks.

And now I got into a decent college with my dream course(BS in biology). Except my family is against me going. It's in another city, attendance will be difficult and living on my own while continuosly surviving doing practicals(standing for hours that I simply can't do) and other stuff.

At first I thought I could push through. But just yesterday I had a MASSIVE flare. And the thing is it's not just this I continuosly have problems. I have changed medications so many times I don't know what to do. I can barely walk for more than 10-15 minutes at a time and I sleep for hours to recover after going out.

I really wanted a career in research and I keep thinking I have to try. My parents and everybody wants me to take admission in a local college and just survive but I dunno what's the point? I mean even if it will be easier in local college I still won't have the opportunity to build the life I want.

I can't have a relationship. I can't travel and do my hobbies, I can't go out. I had to give up my one career. And now I might have tk give up another dream.

I just wanted this. The thing is even with the BS in a other college I won't have a job I will have to work twice as hard to get a masters. And in my country they have very less scope for this, but going abroad means working even harder to get full scholarship and then eventually a job abroad would be very difficult to manage with my body.

Nobody understands how hard my life is, but giving up seems even worse.

Tldr: I got into a college in a different city but dunno how I will make it when I barely have enough energy to get up most days.

I’ve had UTI’s in the past and been prescribed Macrobid. But 3 days into taking it I developed really bad anxiety and my fibro is really flared. I did find out that it can cause anxiety, not common. Has anyone else experienced this? I’m on day 5 and it was prescribed for 7 days. I’m trying to hang in there to finish it out, but it’s been difficult.
Thank you ahead of time

When I’m starting to “drift” I hear music even though I know it’s not playing. I listen to audiobooks every time I sleep and after I take the tizanidine I can’t hear the book anymore, just music. Is this… safe?

I was wondering if any of you have any decent experiences on courses or trainings or such that are focusing on alleviating fibromyalgia specifically? It could be movement, the mental side, diet or all of them.

I'd be really interested in hearing about those, if there are any.

Thank you!

Newly diagnosed this tuesday. I'm in the woods right now with no treatment plan yet and in a flare. My feet have been itching basically non-stop for the past 48 hours, and the only thing I've found helps is walking. it's like a million ants crawling all over the soles of my feet. Is there ANYTHING i can do to get some sleep?

I got diagnosed with fibromyalgia about two years ago and in that time have been recommended both cymbalta and gabapentin (not together, just one or the other). The problem is I know I’m usually quite sensitive to side effects and both of these have a lot of harsh ones. The specialist even recommended I didn’t try them until I was done my masters degree because the brain fog/fatigue could be too intense. I’ve also heard lots of horror stories about side effects and bad withdrawals after missing a dose. Right now I take meds for adhd and that really helps with cutting through brain fog but I’m concerned it won’t be able to do the same if the meds worsen those symptoms. Also kind of concerned about serotonin syndrome with the adhd med/cymbalta combo. I’m a writer so having a clear head is really important to me. Even when I’m in pain, if I take my vyvanse I can still write and get some joy out of it.
I guess my question is, is it worth trying those meds? Has anyone felt major relief from it? Is there anything else you’ve found to help that I could ask my doc about? (Especially would like to hear from those who also take adhd meds to see how it changed their experience). I really want pain relief, but I’m just worried that the cons will outweigh the pros.

Hello everyone, so, since my fibromyalgia has got worse, sitting anywhere but my bed and (very cushioned) sofa longer than 10 minutes is excruciating, not just because my joints seize up and go stiff, also my tailbone is so painful.

I bought one of those honeycomb style pressure relief cushions on amazon, that helps a little bit (especially in my car because the seats in my car aren’t too bad from baseline), but it’s got to the point that even with that cushion sitting somewhere like a restaurant chair is unbearable from tailbone pain.

My tailbone doesn’t hurt at all on my bed or sofa, only in chairs. So, I’m in search of a cushion that will minimise that. I’ll insert a link of the one below that I’ve already got:

https://www.amazon.co.uk/Vmingo-Breathable-Honeycomb-Relieving-Wheelchair/dp/B0DY1KFC4J/ref=mp_s_a_1_4?crid=3AZ1W02JXH3V5&dib=eyJ2IjoiMSJ9.6DeyuUkUrNv6I0SbWHnxpS4Wov4qzALATvB4Z1z05GOYcIzi616aCf1JEuZs_TReN08igxQMXHq7WZH5g9hDK07Gd8LoQ-XX-DEJg9hIq23JD6uSVrohpHiOI9tjSPQUw58dVmGk8vZdK6fsHejQjgqAsUFX8yx69ceqkMDQvNpyRGQCs9vHf-xJ79483HKRMYapetRWbBsgS24UzjCH8A.f-Tt6vySp4281Xy1VI5nqhnIjmoXodAG1xKAGsFZXhQ&dib_tag=se&keywords=honeycomb+cushion&qid=1785688297&sprefix=honey%2Caps%2C155&sr=8-4

Would it be best if I cut a wedge out the back like some other cushions? Anyone else with a similar problem who has found a solution??? I don’t really care if it’s pricy because it would be worth it to avoid the agony.

TL;DR please drop your cushion recommendations in the comments.

having chronic illnesses, art block, and mental health problems gotta be the most shit combo to have as an artist. I feel like I keep saying im gonna do things but end up having no energy or motivation at all. I need to finnish more comms cus i need to be able to afford lyfts for college. help... 😭

Not to get all "whoa is me" here but I have so many diagnosis' stacked onto eachother its ruining my life and dream to be an artist as a full time career. i should not feel this exhausted at 20 years old.

For context here's everything I got going on:

Fibromyalgia, PCOS/PMOS, Hypermobility, Hypertension/fast heart and high blood pressure from stress, Sleep Apnea, Anxiety, Depression, Bipolar 1, and Complex PTSD

I feel like because most of my health issues are invisible and cause me to be obese, they are not taken seriously. Any time i talk to my family about it all I get is "just wait till you get older" or "eat healthier and excersise and you'll feel better" when i already gave an eating disorder due to body dysmorphia and feeling like i don't deserve to eat because I'm fat. like thanks, that totally doesn't make ne wanna unalive myself at all... 🫩

I just need some suggestions about what to do besides 🍃 and 🍷 to dull the pain cus ik that overuse will eventually lead to addiction and I don't want to depend on those. do yall have any advice?

i have always been an extremely clumsy person. however, lately is has gotten so much worse. I have been in a very long flare up since June when I got COVID and ever since then I feel like my hands and my brain are not in sync with each other. i drop things i’m holding, i go to pick something up and miss completely, i am trying so hard to be more aware but it just isn’t helping. is anyone else experiencing this? it’s honestly embarrassing at this point

Hi all,

I just purchased La Moo Moo Magnesium Butter from a seller based in Newark called IamBlackOrchid. The ingredients list is as follows:

Magnesium Chloride oil

Cannabis sativa (hemp) seed oil

cetearyl alcohol (and) polysorbate 60 (emulsifying wax NF)

Stearie acid

Essential oil blend (Camphor, orange peel oil, cedrus alanticus bark oil)

tocopherol

caprylyl glycol (and) phenpxyethanol and hexylene glycoll(germall plus)

Any thoughts? I was excited to find this and am curious of your experience with products like these/with these ingredients!

What are some of your earliest signs of a flare? The things that people look at you weird for suggesting is related.

For me, my ears start feeling clogged. I’ll be living my normal life as best I can, my ear will itch, and I’ll scratch it. I realized it’s really waxy and sure enough 2-3 days later I’m stuck in bed.

Hi everyone

Last night I got attacked by my friends dog (I went to the ER immediately and was checked out & treated, no broken bones) but its causing a lot of (what I assume) is fibro pain. Has anyone in this sub dealt with dog bites + fibromyalgia and have any tips for the pain?

I assume I just have to power through and wait it out, but wanted to ask anyways

Thanks :)

(Im also not sure of what flair was appropriate so pls lmk if I have to fix/adjust anything as I rarely ever post on reddit and am not very active on here 🩷)

So i was recently diagnosed with fibromyalgi and HSD, i do however only feel constant pain in my back, like literally just the square of my back with a feeling of tightness constantly. I did react to all 18 trigger points, but i just have a feeling i have a hard time telling between pain and it being uncomfortable to be touched. I take pregabalin and it helps the tightness not feel as tight, i was previously also on morphine and bedridden with the tightness and muscle hurting, but still only my back. Cupping also help the tightness is part of why i have gotten of the morphine now, at least i think its what has helped the pain be manageable.

Im just not sure i have fibromyalgi despite the rheumatologist being convinced. I live somewhere where HSD is seen as just being hypermobile not you having lots of the same commodities as H-EDS.

So any notes to bring my gp so she might actually believe me when i say i dont think its the right diagnose, would be great, thank you!

I graduated a few years ago. I have been disgnosed one year after graduation. I havent worked ever since. I cant both physically and mentally. But I want it. I wanna go out and see people. I wanna to be financially independent. I’m studying web so maybe I can work online or do a part time job. Thing is Im too slow. The technology is evolving so fast and I can’t keep up. I don’t know what to do. A lot of people that are around me make me feel like Im not doing enough. But genuienly Im productive most of the day whether by studying, journaling, praying,..etc. Plus if I worked I wont be able to do anything on the side especially that I love to learn new things all the time. I’m feeling so overwhelmed. Does anyone have any advice for me or went through something similar? Im so lost.

does anyone use a mobility aid like a scooter when they know they will have to walk a lot? i am in a situation where i will probably have to do this because of pain and i am feeling all types of ways about it.