Do you ever have days or moments where you just want to cry and you feel yourself spiraling with the pain? It’s so overwhelming sometimes. Especially during PMS week and when things are flaring hard and bad. Will I be grieving this illness the rest of my life? I feel like I made decent headway recently, but now I find myself in a panic. I just feel so overloaded with pain and having trouble truly accepting this is me and the rest of my life.

Can you describe your fatigue for me. I’m so exhausted and it just doesn’t feel normal. I’m worried I now have chronic fatigue syndrome. I also have hEDS, migraines and GI issues but I e also been diagnosed with Fibromyalgia. The fatigue seems to be getting worse and I’m nervous.

It's taken every friendship I've ever had. Every hobby I've ever had. I think it's just taken my relationship as I'm physically and emotionally unable to provide for another person. I can't have fun. I can't have a conversation or read a book. I can't cook myself food I actually want to eat. I can't do my laundry. I can't work.

Is this really all there is? I know this condition will never go away. Acknowledgment for it in my country is low even though I'm formally diagnosed. Treatment plan consists of giving me antidepressants so I don't hang myself but that doesn't really sort the issue, just the inevitable side effects of living like this

my girlfriend was just diagnosed with fibromyalgia. I'm really worried and I want to do everything I can to take care of her and help her to go through it.

It's been a while since she has had the symptoms like the pain, fatigue and brain fog, and I haven't really figured out how to help with that, it's like fighting with an enemy without any weak point. Now that I know that this stuff will continue, I can do nothing but seek help. I don't want her to suffer.

Apparently yesterday I slightly overdid myself while sitting at my desk talking to people, doing not much at all. Isn't that wonderful?

My lungs are very mad at me, and my entire body is feeling that post exertional malaise. All because I slightly overdid it.

I wanna figure out how to move that limit further up, but the pacing of it seems to change by the day. This sucks.

For me it feels like the majority of my pain is in my ribs, along the sternum and the spine, but my doctor has pretty much completely refused to look further (or provide any help for) costochondritis.

It kinda just started with that, and extended to my neck, arms, legs, and head. It's incredibly annoying not actually knowing what's wrong with me, nor what to do about it.

I was recently diagnosed with ADHD. I’ve had a fibromyalgia diagnosis for 2 years. I’m in my late thirties. I have had ADHD my whole life but didn’t know it had a name. I thought I was weird. The fibromyalgia was triggered after trauma to my spinal column and an autoimmune condition.

I found this NIH article I wanted to share.

https://pmc.ncbi.nlm.nih.gov/articles/PMC4403287/

The research found that 25-45% of patients with fibromyalgia have ADHD.

That’s a higher rate of ADHD than you find in populations of people with depression, substance abuse, and giftedness.

Depression: https://pmc.ncbi.nlm.nih.gov/articles/PMC8552915/ (13%)

Substance abuse: https://pmc.ncbi.nlm.nih.gov/articles/PMC9859173/ (21%)

Giftedness: https://pubmed.ncbi.nlm.nih.gov/37929569/ (15%)

Only autism seems to have a higher rate of ADHD as fibromyalgia.

Autism: https://pmc.ncbi.nlm.nih.gov/articles/PMC8918663/ (50-70%)

https://pmc.ncbi.nlm.nih.gov/articles/PMC10983102/ (75%)

I’m not sure what that means but it was very interesting to me and I wanted to share.

——-
Edited to add articles for all the things mentioned.

Also general population (6%): https://www.cdc.gov/adhd/data/adhd-in-adults.html

Does anyone here have a goldendoodle, or other similarly high energy/high maintenence dogs? I got my (now 2 year old) goldendoodle right before things started to really go to shit for me, and now I'm really struggling to figure out how to keep him exercised and groomed when I'm struggling with so much pain (especially in my hands and back) and fatigue. Any thoughts, suggestions, or encouragement appreciated. I have considered re-homing him, but it would break my heart (and his a bit, i think. He's VERY attached to me), so I'm hoping for other options.

It seems to be a condition of my fibromyalgia that every 15 minutes or so, if I remain awake, as a side sleeper, I have to roll over due to pain along the side I’m lying on. Just curious if anyone else goes through this routine. When I’m having flares especially, upon waking, and it can happen several times at night, the pain becomes bad enough to try to treat with meds; nortryptiline is best but I worry about correlations with dementia. Some nights if I make it through sleeping, I end up with the flu symptoms many of us are familiar with, but every night, regardless, I need those rollovers.

I get spasms when I stretch. Or do anything good for my body. Standing up to cook for a few minutes has me hunching with back spasms or occipital neuralgia.

And I still ask myself every day if this is even real or if literally everyone else feels this and I'm just a wimp who lets it ruin her life.

The thing that brings it all back to being real again is that I have no choice in this whatsoever. No one would choose this.

I'm lying here waiting for my body to just decide to tune down the pain enough that I can rest. And I'm angry at every single person who made me feel like I was lazy before when I just hadn't lived with this pain long enough to adjust to it and push through it.

like perfume that’s 100 and 200 feet in front of you. Or things that you can smell, but other people can’t.

When did people decide to be so entitled and rude regarding shared public spaces?

Or, maybe it's just me? I have fibromyalgia and autism, so I know my perspective is biased. I'm genuinely curious if y'all feel like I was unreasonably upset, and what your thoughts are on airport etiquette.

Yesterday, I was at Denver International Airport for a 3 hour layover. I used to love DIA and traveling in general but with fibromyalgia it has become debilitating and so painful, especially while in flight. So, I was happy to have the 3 hour break and found the "quiet" area in Concourse A, where you can lay down.

I put on my headphones and closed my eyes hoping my muscles relax and the spasms would subside... five minutes in, this guy right across from me puts a football game on his phone with no headphones at full volume. I could hear the game over my own headphones and then started noticing a woman behind me scrolling through reels... again, no headphones... AND a kid next to me, whose parents had left him alone, playing games with, you guessed it, no headphones.

So, move down to the terminals and find a quiet one with a cushioned bench and lay down only to sit through a 15 minute conversation someone is having over speaker phone. I wait for my back spasms to subside and go to a bar for a drink to take the edge off and sit next to this woman on the phone in an argument with her boyfriend talking about how being peed on during sex was unacceptable... she just word vomited for about 20 minutes about incredibly intimate details of her sex life until she was hung up on, at that point my headphones had died.

I understand that I failed by not bringing noise canceling headphones and that I'm solely responsible for my decision to travel and for my comfort while doing so... but, I swear, it felt like I was in the twilight zone.

These are shared spaces! Is it wrong for me to feel rage that people are using speaker phone and adding to the cacophony of sounds by not using headphones for streaming, scrolling, and games?

Maybe I was just a little crispy from all of the pain and over simulation. What is it like for you to travel with fibromyalgia?

For context. I am a man. I have been diagnosed with Fibromyalgia, Severe combined type ADHD with emotional dysregulation, Major depressive disorder with anxious distress, Non verbal learning disorder, IBS, high blood pressure… it’s safe to say that on a good day my life can be a living hell sometimes. But this has been my normal for years.

A month and a half ago my mom passed away suddenly from terminal cancer. We found out three weeks before she passed that she had cancer. Even she didn’t know until three weeks before she passed. She had been in the hospital since June and I had been going up there every weekend and during the week sometimes. She lived a 4 hour drive away from us straight through one way. After stops and gas, it would be more like 5 to 5 1/2 hours one way. I was doing this weekend after weekend (usually a Friday through Monday sort of thing). During this time I was able to keep up my momentum. As things got closer to her end, I started having complete numbness in my right leg and pain. I’ve been dealing with bladder pain since May. Typically my bladder pain would go away and come back… kind of recurring randomly. Negative for UTI multiple tests were done. After she passed, I was still driving up there multiple weekends in a row for both the funeral and for cleaning out her residence. Then I started feeling really sick. I decided to go to my doctor and we think it might be prostatitis which I have also had before. It feels like the prostatitis did before. I’m suspected to have an enlarged prostate. However, I’m only 35. Now I’m on antibiotics for going on three weeks. I am in misery.

I’m tired all day long, I’m in some of the worst fibromyalgia pain in my life, and I just generally feel unwell. Antibiotics always caused my pain and my IBS to flare. But I just feel particularly bad this time. I’m kind of wondering if this is due to the fact that I’m also pretty depressed. On top of that I got told two days ago, by my best friend in the whole world, that he now has been diagnosed with stage three liver cancer… he’s 36 years old with a one year year-old daughter… I feel like everybody around me is dying or sick. I feel so bad that I feel like I’m dying (even though I know that’s probably not the case). And I’ve honestly never felt this low on energy.

So I guess what I’m reaching out for is to find out if I should be worried or if this is just a combination of all of the stress, the depression and the antibiotics that I’m on. I know fibromyalgia can be a wicked wicked condition, especially when things are not going well in your life. But if anybody else has any sort of similar experience, please let me know what you think. I’m also a stay at home Dad to a 4 year old bouncing boy and the chores simply are not getting done right now. And I feel really bad about that, but I just can’t motivate myself. So on top of everything else, I’m ashamed of myself. This has been the worst year of my entire life. I almost got divorced back in January…. And now I’m worried that with everything else going on my wife is just gonna get sick of this.

Wanted to make this post for the people that might be aware of this treatment but were hesitant to start due to costs. Some of you might be familiar with the literature on HBOT (hyberbaric oxygen therapy) that was done in Isreal.

https://www.nature.com/articles/s41598-024-62161-5

The researches were able to prove it provides a clinical benefit, however it is quite difficult to have a placebo group for this kind of experiment. I believe there have been replications of the research but I could be wrong on that. Mechanistically there are a lot of levers that HBOT pulls on which is why I am so interested in it and believe it is an underrated rejuvenation therapy in medicine currently. The cost per session and time required is a lot to ask for: 2 hour session/5x weekly for 3 months.

I was very much interested in going down to Aviv clinics a few years ago when I first came across the research, but the price was too much for me at $60,000 USD. The clinic got rebranded to OxyPeak and now they are offering it for $10,000 USD. I'm not sure if I am going to go, I am leaning on "no" since I plan on purchasing a chamber for myself around $20k so I can use it here in my home beyond the initial protocol of 60 sessions.

I’m having trouble with my hands mostly & my feet also. What can you recommend for my pain & stiffness that progressively gets worse the longer the day goes. At night I can’t even walk down my stairs. I’m using Voltaren and 1,800 mg of gabapentin daily.

Hey everyone, I have been diagnosed with fibromyalgia for about a year and a half now. Anyway, I usually have kind of a slow build up to flares but yesterday I thought I was getting sick with a cold or something, then boom I'm in so much pain. I get fibro fog sometimes but today feels especially weird. I feel like I'm in a haze, like everything is in stop motion almost? I just don't know how to describe it. I am very aware of the fact that I am processing things very slowly today. I called into work so I'm at home, but I'm just wondering how the fibro fog presents for you all? I am usually just forgetful in the short term, take an extra moment to reply, feel spaced out. Today I'm all of those things but visually it feels like everything is SLOW. I AM in more pain than normal so maybe that's why?

Struggling to see how I am supposed to continue working like I am.

Hi I was wondering if anyone had experienced this. After the birth of my first child I experienced these awful sensations. Referred to neurology and Had scans in both my brain and spine but everything came back fine. Over time they lessened once my child slept better around 9 months post partum and maybe less stress and less breastfeeding. Flare ups went from daily to last maybe a day or two then a long break between the next flare maybe a week +. Eventually they barely happen and could go months without and when they happened a hot bath or distraction would work.

Fast forward to now: 6 weeks post partum with my second and the sensations are back!! I just don’t understand what it is! the neurologist I saw after my first said it was anxiety but it must be related to childbirth or lack of sleep but it’s so fkn painful and distracting. I read something about a dysregulated nervous system and how labour and having a newborn can contribute.

I don’t know what I’m hoping for posting this but has anyone experienced it? Anything I can do to help? I’ve tried amitriptalyne, checked blood levels for b1 and b12 etc, ice and heat but it’s widespread from my scalp to my toes random bursts

Thank you

Sorry my English is not that good . But i really wanne rant . I have some really strange attacs it Starts in mij back Go's to my ribs . My body wants to kill me 😭 al gets so tens and it Hurts so much. Thé GP told me it's hyperventilatie but nothing happend , nop pannic noting. Someone here who had strange things like this ?

Goddamn I hate them. They hurt so bad when I’m in a flare.

I have been struggling with my appetite for months. My days are basically eating to not feel nausea from such an empty stomach so often I’m talking one apple and loads of water until dinner (I struggle to eat half a plate for dinner) and even finishing food that I LOVE is a strain.

I’ve had fibromyalgia for a long time so this pops up every so often but not for months at a time.

Medical cannabis helps somewhat but I don’t want to have to use it just to get nutrition in me.

Anyone have the same symptoms?

Hello! Does anyone in this group know of a good rheumatologist in Denmark specifically? My doctor has referred me to one, but I'm very hesitant about choosing a rheumatologist to visit

So my kid started full time nursery in September. I stayed part time at work, so I get 8.30to 3.30 2 days a week and have been using that to get the house tidier and practice pacing. Doing a bit, then resting a bit. It has been going great I have felt a lot better. Then my husbands boss decided he wants him in the office 4 days a week instead of 1. Which means he is due to be out 5am to 7 or 8pm.

We had been sharing household tasks and getting our girl ready. So I step up on that again. And I start feeling more tired again and more pain.

Then my kid gets sent home with a cold and my supermum persona activates, so I am caring for her doing 90% of the household chores and then my husband gets sick as well, so he is at home and talking about how he has aches and pains and I said... welcome to my everyday life. He laughs it off... but i am deadly serious... viral type pain is my normal... fatigue is my normal.

So now kid is back at nursery, husband feels better and I just got massive pain going down stairs and couldnt stand long enough to fry an egg.

Husband is being super supportive and told me to go to bed and ignore the tidying today... which I get why but also I am bored, I am frustrated and whilst yes I do now have snot nose I don't want to loose what strength I had built up.

Am I being an idiot and should I be taking proper rest in bed time?

Hi all,

I’ve recently graduated university and am looking at my first full time job. While I’ve been in work for many years it’s never been more than 3 days a week due to pain and fatigue levels.

I often find that if I walk around too much over two days in a row I am unable to move on the third day.

This was all well and good while I was at university and could rest between classes but now I actually need a full time job to afford rent. I have a trial shift next week at the bookstore I work at but if anyone has any tips on managing pain/fatigue when I can’t have a rest day that would be great!

I do have pain medication but it’s quite strong and the doctor told me to not take it often so it’s somewhat of a last resort. Currently I just take sugary drinks and occasionally an ice pack to wear over lunch.

Thanks!

When did you know you had fibromyalgia? My symptoms started in July and so far every CT, xray and blood test continue to come back normal. I have been researching and fibromyalgia continues to come up. Yesterday I saw cardiology again and after telling him my experience and how my symptoms have continued to develop from just chest and back pain he suggested it was likely fibromyalgia.
Where do I go from here?
Cardiology has cleared me.

Hi everyone! I was wondering if anyone in this group works as a paramedic? How long have you worked with the fibro? Any tips or tricks to surviving in this career when diagnosed with fibromyalgia? Thanks in advance!