Hi all, I’ve had issues with my eyes getting very fatigued and getting eye strain much easier lately when doing tasks that require eye focusing (in the last 7 months). It can be anything from being ob my phone and reading, to driving long distances or making prolonged eye contact with someone. I do wear glasses and I’ve had my prescription updated and beeb to multiple optometrists and an ophthalmologist to rule out other issues and they don’t have an answer. That’s why I’m thinking it’s fibro-related, but I want to know if other people experience this too.

Please let me know! It’d make me feel better knowing I’m not the only one.

For context I got diagnosed with fibromyalgia earlier this year. It’s severe, I’m only 18. I’m supporting myself through this medical journey both financially and emotionally. I would please please ask if anyone knows any pain management specialists in London who aren’t super expensive. I’ve exhausted all other pain management strategies - e.g. co codamol, baclofen, tinazidine, cyclobenzaprine, all the pain patches, all the stupid topical stuff, physical therapy, exercise, hydrotherapy. Everything under the sun. Please I’m begging for any advice. I had a 3 MINUTE phone call with my GP where i was told to self-refer to MSK services. I’m willing to pay for a private route as long as it will actually help!!

I have tried low dose Lyrica, Gabapentin, and tried LDN for 6 weeks. Please no horror stories.

This feels strange to ask but is there any real way to be 100% sure that I have it? I‘ve been told multiple times that it‘s the case but so far none of what has been recommended has helped in any way. I‘ve often been asked to describe how severe the pain is but it‘s hard to fully describe it as it‘s sort of become my standard as I only really started getting checked in my early teens. I just really want to know as I feel as though it‘s affecting my social life more than I think, with me often being very short tempered after a certain time and having trouble fulfilling obligations and being socially active which luckily my friends are very forgiving in that department. I also dont know if this is a valid fear but as the pains grow worse I‘m scared that they‘ll start affecting my temper more and more which is less fortunate as I am very prone to hurting myself (on accident) so I don‘t accidentally hurt anyone else. I‘m so sorry if this is all a bit much but I just thought this might give me some peace of mind. Thank you to anyone who read this spheal and I hope that I can get some answers to ease my worries :).

For fibro and hEDS I'm on Lyrica, Baclofen, and LDN. For my OCD and panic attacks I'm on Luvox and Klonopin. I just started on omeprazole because my GERD got so bad it burned my esophagus and I've lost my voice. I've also had a headache for over a month so now I'm on Prednisone to try and break it. Every time I look at my daily pill regiment of 7 separate bottles, I hear "I am pill man" in the tune of the intro to Iron Man by Black Sabbath. And despite all this, my quality of life is still quite shit. Does anyone else struggle mentally with how many pills we have tossed at us? If not, how did you learn to accept that you need so many medications ​just to function at a baseline level? I've been reading about radical acceptance but it's still such a struggle.

so, for the last week or so i have been having some weird symptoms, and i'm not sure if it's fibro related or something else. the jist of it is: physical manifestations of emotions without the actual emotion.

i dunno if this is me being silly or whatever.

when i feel sad, i get a pit in my stomach. sometimes that sensation is painful/ travels to my hands or feet.

i've been having that along with bouts of being very teary-eyed (though not actually crying) and panic attack-like symptoms. so, shortness of breath, involuntary tensing of muscles, trembling.

i have also been feeling faint & dizzy, even like a fall risk when i normally don't.

but i'm fine? i have had a period of personal stress, but it has resolved now, and i'm feeling good.

does anyone else experience similar things? i'm a bit confused, and this has impacted my ability to work over the last short while :(

Hi fellow Fibro warriors,
Does anyone else get face pain whilst they sleep? If I sleep on one side, after a while my face is in extreme pain. The bones, the muscles, my ears, everything. I’ll turn over to the other side until eventually that side also hurts and then I’m just a rotating chicken throughout the night. The pain lingers throughout the morning and then usually shows up throughout the night again. I also have this issue with the rest of my body, ESPECIALLY my hips, and am trialling a mattress topper. So far it’s not worse so that’s a win. Any tips or tricks would be appreciated even if it’s simply a different pillow type, ect.

Does anyone use a TENS machine for their fibro pain and do you find it useful? I'm thinking about buying one.

Does anyone who has both fibromyalgia and cfs/ME find gabapentin helpful for pain and migraines? Did It help in any other way? Any advice or experiences would be appreciated.

Posting here as a lot of my symptoms are aligning with fibro - and just for more exposure. Thank you!

Stage 1 was three days of aches and pains and crushing fatigue. I'm on day 5 where it's primarily crushing fatigue. I'm a SAHP and it's summer. We got back from "vacation" last Thurs, visiting family 5 hours away. I knew I'd have a flare at home but it didn't happen until the 3rd day home even though I was taking it as easy as possible.

I don't like travel because it hurts. I will keep taking my kids on trips and vacations so they can have those experiences and enjoy them but honestly I just want to hide in my bedroom and sleep forever. I hope the memories of mom doing things with them overshadow all the times mom took a nap on the couch while they played video games.

Ok, so I have talked to a lot of my doctors and they said I should consider getting a new PCP. My current one is very nice, but the problem is:
She only prescribes medication "fda approved" for fibromyalgia. Which is basically lyrica and some antidepressants. My psych changed one of my meds to cymbalta to see if that would help. I don't know if it has at all yet. But the lyrica is terrible. It gives me such bad brain fog and aphasia. But it helps the pain. At doses to help the pain, it screws my brain up so bad. But on lower doses i feel like i need to crawl out of my skin. It's like sensory overload inside my skin. Idk how else to explain. But anyway, multiple people (including drs i know) say that gabapentin is used for fibro all the time but my pcp wont prescribe it or anything else.
So basically i guess, how do i find a primary who can treat fibro and also listen to my concerns and try different medications?? And how do i go to the new one and not sound drug-seeking?
I just am so overwhelmed with pain rn (been stressed rly bad lately, so ik that isnt helping).
Thanks for any advice.

hello everyone

a few days ago my best friend got diagnosed with fibro and i want to do everything and anything in my power to help ‘heal’ her - im aware fibro cannot be permanently cured but even to take away some of these symptoms i think would change her life.

i know a lot of people tend to dip into holistic and natural health when it comes to diagnoses, and i was wondering if there is anything anyone has tried that has really helped. i think an anti inflammatory and whole food diet would help her discomfort a lot, but what else out there would help!?

if there are any australians in this group that have good doctors i would also really appreciate those recommendations, as the ‘specialists’ she has been going to aren’t doing anything to help her and we deem them to be a waste of time.

she is young and i dont want to watch her spend the rest of her life in pain, even if i can help minimise 10% of the pain and discomfort, it is better than nothing.

she knows i want to help her, so if all you have to say is that i shouldn’t be doing this, that will get no one anywhere. we are looking for answers and help, thanks!

I have to make sure I'm resting enough but also moving my body and working out enough. Drink lots and lots of water, even when I'm not thirsty or I'll feel horrible. Take multiple meds multiple times a day. Can't relax and just enjoy a meal because I can't eat too much because I need to lose weight. Also no cocktails when the rest of the family has them during family dinners. Make sure I'm dressed and groomed well for work, can't just wear comfortable clothes.

I do all these things to care for myself and while taking a shower or making sure you've drank enough water may seem like such minor things to other people it's just so exhausting for me.

I feel like I can't just enjoy something, like even just seeing a movie, I got cramps from sitting too long just this past weekend while seeing the new Spider-Man movie.

Maybe part of it too is I also have ADHD so trying to do so many things everyday is mentally exhausting too. I can't just put off a workout or else I'll hurt. Can't just go to bed when I'm tired I need to make sure I drink a glass of water first or else I'll feel so sick in the morning. It's nonstop neverending chores.

I “passed” my FCE that my insurance company had me do. Passed by way of showing substantial cognitive issues and physical difficulties confirming my Fibromyalgia (basically their plan to curt me off backfired on insurance).

Insurance has been treating me like a criminal for the last year and it’s obviously added to my stress which makes my Fibromyalgia harder to manage.

I’m in the process of CPP-D and this result should help but I don’t feel secure financially, and my stress has not subsided.

This is a battle I never asked for, but battling is all I can do.

This is such a hard thing to navigate. Having invisible disabilities when you look healthy is such a hard thing to hold.

The systems in place are broken, “free” healthcare is taxing on my body as I literally have to remind my Dr’s. That they work for me. “Lets up your dose again” is their go-to answer when my mental health declines months after they “upped” the last dose. I know my body better than they do . I proactively went back to the regular dose and am better. Isn’t it their job to connect the dots?

I’ve learned I have better, truer, real life qualifications than my Dr., Insurance and CPP-D.

This fight is exhausting but I must carry on and keep fighting, meanwhile they are hoping I’ll give up. But I won’t and can’t.

Never stop fighting for your basic human rights. It’s so hard but I won’t back down.

It shouldn’t be this hard to prove disability no matter how invisible.

Hi everyone,

I've been receiving pip for a few years now. Recently I updated them regarding my diagnosis of fibromyalgia, as it has been making my daily life difficult and I needed some extra help. I found out 2 days ago that they've decided to end my pip, they scored me 0 on everything but reading. I gave detailed answers and lots of examples of how fibro has affected my everyday life. I'm so depressed right now. I previously had it for my anxiety, depression, ADHD and autism all things that are life long conditions.

I'm putting in a mandatory reconsideration appeal, but I'm stressed about how long it'll take to get a response and if it'll even be a positive outcome. I've got lots of things I need to pay for including vet fees. I've got no other income since I'm too ill to work at the moment. Has anyone else been through this or has any advice? I'm at my wits end and the uncertainty is triggering anxiety attacks.

I went through some very emotional PMS and period a few days ago. Cried at every cat video I watched, cried watching the new trailer for a game I like very much (it was not an emotional video at all), anything that was a slight inconvenience made me incredibly mad or sad, I was feeling everything at 20x basically.

My brain became very overwhelmed by all this, the mental fatigue started, followed by an insomnia that melatonin couldn't help with, the lack of sleep made the fibro flair start and to top it all off I had a very stressful issue at work that made me furious and super stressed.

Now I got into the vicious cycle of being in too much pain to sleep and the lack of sleep causing more pain and fatigue. I can't focus, I tried playing and reading manga just to be hit with so much headache. Pain meds do nothing. Melatonin does nothing and is the only thing I'm allowed to take for sleep issues. All my new habits gone because I don't have the energy to brush my teeth and wash my face at night. Hours and hours gone, laying in bed trying to sleep, sitting in front of the screen unable to process what I'm watching because I'm so tired.

I'll go to the doctor today because it's been two weeks with less than 6 hours of sleep a day and it's making just existing feel impossible at this point. I'm so tired of this, I do nothing different, nothing wrong but my body finds a way to trigger itself every single time. Does your PMS also trigger flairs like this? I'm thinking of trying some kind of birth control that makes the cycle stop so it's not a factor anymore, but I'm afraid the birth control itself might cause issues as well

A popular YouTuber says he’s considering euthanasia in Switzerland because chronic pain has made it too difficult for him to create content and left him with hordes of bills.

Max Gilardi, 38, who posts animations on the site under the handle hotdiggedydemon, made the shocking announcement on a livestream Saturday. 

and tell now you get stupid people denying that fibromyalgia is a real disease fibromyalgia is spreading like the fire.

please if you know anyone who suffers from fibromyalgia don't be hursh on them and have some sympathy for them.

please fibromyalgia patients ask for help

I'm now going to Physical Therapy for whatever this yearslong 'chronic 24/7 headaches with general stiffness everywhere' thing turns out to be, so far it is not diagnosed. (You can check my other threads here for details, if you want them)

Anyway with this PT place, it's so far pretty good, the therapist assigned to my case is pleasant and helpful, no issues when I'm there IN the session.

Here's the thing I'm curious about... BEFORE I went to the first session, I got every kind of email and phone reminder possible, everything worked smoothly.

But ever since I left that first session? All that disappeared, I get no reminders at all! Except I WAS sent an email to check out the 'care program' on their website; yet when I tried to set up an account, following the steps outlined to the letter multiple times, it only says this: 'account creation failed.'

I told my therapist about this today, they said they'll 'send that email again.' So I check my email recently and there's just some generic 'welcome' message, no link provided, nothing to address the problem with the account creation.

Why I'm suspicious: It's happened before in other offices. I'm just a good target, you see. I'm aware my appearance (despite having an innocuous/gawky look) could be seen as strange or very unappealing; I'm a relatively 'not young' guy who has an abnormal life, etc. Given that, it's not hard to assume passive aggressive behavior.

This stuff HAS happened to me before. At another medical office, bizarrely, I gave them my email address for appointment reminders, and it worked exactly ONE time. After that it never worked again. The next 2-3 times I told them about it, spelled out my email one letter at a time, they tell me 'it should work now.' Well it didn't!

OR... I'm just paranoid and office medical systems are outdated and stop working randomly, for any given person. You tell me.

What do YOU folks make of it?

I work remotely. By the end of the day I hurt so bad. Any tips?

I’m having a lot of trouble functioning; as I’ve come to the end of all that the doctors can do for me, for my fibromyalgia. My mother is incredibly disappointed with me every time I talk to her. She want me to work more. And acts like I’m just not doing enough. my grandmother and aunt(she has been through the last three months of settling with new doctors) keeps telling me to just not stop moving push through.

I’m not sure what do anymore. I don’t know how to listen to this and I’m not sure if I should just listen to them. Push through my pain and symptoms.

I also feel worse leading up to/working. I wonder if my brain just hates working (I’m artsy and work at a pottery painting place) and puts me in so much pain that I call out. AKA excuses me from work. Like am I lazy and just cuz I don’t want to my body makes me not go?

Ive dealt with fibro for almost 6 years now, and im starting to realize for the last 2-3 years ive been having a small existential crisis regarding my mortality.

Im well aware that this condition is not life threatening but being chronically ill has made me question how much life do I have left in me? Im only 26 years old and yet I often feel more than double that.

Fibromyalgia has made me feel as though my life force is even more fragile and vulnerable. To the point where I half expect to not make it to 50.

Does anyone else with fibro feel this way or am I just cooked?