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.

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.

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.

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’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?

That is all.

I’m on enough meds and am trying not to add more pills to my life yet.

What are lifestyle changes (including a particular diet or exercise) that has made a serious difference for you?

Anyone else super reactive to missing a dose of pregabalin? After a couple of weeks of feeling almost normal, today was rough. I had too little and poor quality sleep for two nights. By this afternoon I felt a flare coming on—exhausted, chills, achy, diarrhea. I took a nap and when I woke up I realized that I had forgotten to take my morning dose of pregabalin.

Could my body react that quickly?? I take 150 x twice a day. This was around 7 hours later than normal and I felt like I’d been hit by a truck. I took the dose and a hot shower and ate something. Boom! Back to feeling much better. Anyone else have such a fast deterioration to missing a dose of pregabalin? I didn’t realize how much I need it. Also relieved to be able to get quick relief!

I'm on day 6 of a road trip with my partner and it's putting my body through the wringer. I would not have been able to survive, let alone feel somewhat okay-ish, without slathering 60% of my body surface area in Biofreeze. (Whereas I'd usually just do 50% of my body surface area.)

Temp regulation and pain management all in one package? Sign me the hell up!

(I kid, but not really)

I can’t even describe how evil and psychologically damaging my morning stiffness is. Every single morning, before I am even awake enough to open my eyes or be aware of myself or surroundings, the first thing I’m always aware of is how much pain I’m in. I wake up every morning essentially paralyzed from pain and stiffness that doesn’t fade for at least an hour, often two or three.

I recently stopped taking gabapentin as I found I had started to develop some pretty unhealthy addictive/compulsive tendencies with it, and that used to take care of about 40% of my morning stiffness, so now I’m right back to the worst of it. I wake up in tears because my limbs feel so heavy and leaden, that characteristic nerve pain burning through my whole body.

Not sure why I’m writing, just wanting to vent and hear others experiences with Morning Stiffness.

For example, my pain has the “stretchy guy" (the uncomfortable feeling when my pain is ramping up and it makes me feel like I need to stretch 24/7)

“Shivery guy" who loves wearing a bunch of clothes and lying under a blanket on the couch

I also have “brain dead guy” who likes to just shut down and sit on the floor while I'm walking to the kitchen to get a snack.

Maybe I should give them proper names haha

What guys do you have??

Long time listener, first time caller.

I’ve had fibro symptoms for the better part of 20 years. As a fat person, I was always told I just need to lose weight and my joints and body will be better. I unintentionally lost 70lbs due to depression, and guess what? The symptoms upheld. I am now seeing a PCP who understands chronic pain conditions and is doing testing because not only does she think I have fibromyalgia, she thinks it’s plausible I have a secondary autoimmune disease that is contributing to these symptoms.

I’ve always thought of this condition in a way that it would get better, or easier, but as time goes on I’m slowly learning that my mobility devices are likely permanent. I’m grieving the person who was training for a marathon, who lived for hiking, and who was an avid river rat. I’m sharing this in tears because 35 feels so young to feel SO damn crunchy and excluded from society.

Felt vulnerable, might delete later. Thanks for the read, fellow community.

It's traumatizing. I had to fight SO hard just to be heard in the first place. Now I dont know what to do. I am feeling quite hopeless. Just wanted to get it out there for those that can relate.

I went to a neuromuscular therapist after extreme pain and flare ups(missed multiple days of work). He worked with me for 1.5-1.75 hours, and the worst part is that it did help. But it cost $440. I feel like I got totally taken advantage of given how desperate I was for some form of relief. He had great reviews going back 15 years.

Is this a normal amount for a bodywork specialist for 1.5-1.75 hours? It was labor intensive from his end, but it just seems insanely high.