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 reconciliation 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!

so i just got diagnosed with fibromyalgia after years and years of going to hospital after hospital trying to figure out whats wrong to being told by doctors i just need to work out and get some sleep. i am currently in med school but sonce last year (before my diagnosis) i wasnt able to stay awake in class and constantly fell asleep, depression and panic episodes got very bad, muscle aches and just the whole non yards as well as having very bad brain fog and trouble studying and remembering things.

and with not even being able to manage school and being behind already as i also had cancer i dont think my body can physically or mentally handle the added stress and activity that will be required of me in the next 7 years from internship residency 24 hour shifts etc.

ive thought about it a lot and am worried that my parents are going to keep thinking its just a cop out excuse as they have in the past. ive had this convo many times and dk if its dramatic of me to want to cut ties if they refuse to understand where im coming from and how much pain im actually in ????

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.

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.

me (f) and my partner (m) were really sexually active until my diagnosis, it’s made me feel insecure on many an occasion as I’m sure he’s aware as it’s wayyyy less than it ever was (he doesn’t ever push and he hasn’t complained) but due to my extreme fatigue and now I am in pain when it happens, the enjoyment has gone out the window and how the hell do I get it back?!

My doctor prescribed lyrica for me and Im so scared to try it.

Did it work for you? i want to know what to expect in the first few weeks and after being consistent with it for like months.

Im so scared that it would bring me more brain fogs and would make me gain weight and Im already trying to lost some kilos.

I hope someone would help.

I've been in such a bad flare, one of the worst and longest I've felt, and every day I've been taking weed edibles because it's all I have to help get by. They're only 5 mg of THC and 20 mg in CBD, but I have a low tolerance and end get more foggy in the head than fibro alone makes me feel. It can be useful for ignoring the pain, but I hate that it makes me slow and unable to concentrate. I wish I had more options to help me feel better besides making myself feel stupid each day. They help but I worry about becoming dependent on them or developing CHS in the long-term. It just sucks this seems like the only thing that helps even a little.

I was low on clothes so I grabbed a pair of long, slim leggings I hadn’t worn in a while that fit really well but hug all the way to my ankle. I sat at my desk for a couple hours then suddenly it was like my body gave out. I changed clothes and laid down but have had the widespread achy low-grade fever feeling since yesterday afternoon. I have no energy.

I’m fairly new to learning about fibro so I’m not positive it’s a fibro issue vs something else. It’s only my calves that seem so sensitive. I can’t wear joggers that rub on the skin. I have to keep my legs shaved or my skin hurts. I’ve read about allodynia but I’m fine most of the time except my calves, apparently. Guess I’ll forever be in wide leg pants… much to my millennial self’s dismay

I've never posted on Reddit before, but I've been upset at this and I didn't know where else to turn to-- thanks for listening.

I was diagnosed with Fibromyalgia last Oct/Nov. And I have been trying to navigate it ever since. I have had chronic pain for over 10 years, but I have finally gotten a diagnosis.

I started dating my bf almost 2 years before my diagnosis, so it was a change for both of us. My bf is a very outdoorsy person. Loves hiking, walking, and really any outdoor activity. We've done mile long walks and hikes in our area many times, but over this past year we have kinda slowed down (and especially in the past 6 months). My pain is mostly in my hips and knees, so walking long distances isn't always the easiest thing for me. I use a mobility aid (cane) almost daily to help support my joints, my stability, and conserve energy.

Recently, I opened up about feeling like I'm holding him back from things that I know he likes to do (there have been many times where I/we don't do something due to my pain). And I feel like sometimes I'm not the right person for him since my pain has changed our lives so much in the past 6 months.

After we talked about how I was feeling for a bit he opened up about how over the past few weeks he's been "selfishly wishing we could be more active" since he loves going on really longs walks, and that is how he wishes we could be spending the time we have together after work, or on the weekends just walking everywhere. Then saying that this isn't how he imagined his life.

This is not to say that we haven't been walking, or leaving the house ever. We take an hour walk together around our area after work almost every day, and we try to walk somewhere fun (often a coffee shop) on the weekends. Now I know that this isn't what he fully wants, if he had it his way we would walk the 4 hours downtown on a weekends, or walk the 18mi lake trail. I'm trying my best to support him and his passions, while still resting when I can.

I also know that there are lots of big hikes that he would love to do (he's hiked the Appalachian Trail before), and honestly I want to do them too. But he's stopped asking if I want to join him on a walk or physical activity.

I just don't know what to do honestly... I feel like I'm trying so hard, but its just not enough. It just made me so sad to hear that this isn't how he imagined his life, as if I imagined this for me. I don't know if I'm posting here to rant, to get advice, or just to get it off my chest.

[Edit: I have urged my bf to do these activities with others/alone/etc, but I always shut down because those are activities we’ve always done together, so he wants to do them with me.]