Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

@incywincyspidersThank you!

Insomnia is often a part of being in pain 24/7.

No need for this level rudeness on MN. I have reported this post.

Which then has a knock on effect on the fatigue and continues the never ending cycle.

Why should you post the evidence of the very thing you’re aggressively arguing for? How about, because it would shut me up? Give it a go

@0ohLarLar this is a misconception that's one of my bugbears at work! I'm forever seeing people who've been referred for CBT/ACT/mindfulness and told its a treatment and will help with their pain/fatigue. Then they are understandably disappointed that it hasn't helped. These therapies are recommended because they help people to cope with the distress inherent in a condition that can have a huge impact on your quality of life, including sleep, work, relationships etc. An 8 week course of CBT can help someone with a clear focused goal/issue but there isn't any suggestion it will reduce pain, fatigue or cognitive issues which are the 3 key symptoms of fibromyalgia.

I asked that and she accused me of being ‘a creep’

That's not my point.

There's always this self absorbed pity party with certain functional syndromes "my anxiety is worse than yours" "my pain is worse than yours" "my fatigue is worse than yours" that's how it comes across with all this "severe" pre fixing.

Most people walking around are fucking shattered, full time jobs, kids, clubs, secretly suffering depression, anxiety, stress, aches, pains, menopause, illness. But it's life. It can be unfair. But most people don't get the luxury of shouting out "I've been in bed all day, and I'm fucking shattered. I've got a name for mine. You all need to shut up and listen to my severe symptoms because you don't have a fucking clue. "

Newsflash, most people do have a clue. They just have to carry on.

Ramming how much worse your "severe" fatigue Is than everybody else's whilst abusing people in a forum til gone midnight, isn't really helping the cause is it ? Self absorption at its best.

https://applications.emro.who.int/imemrf/525/Kasr-El-Aini-Med-J-2019-25-3-99-103-eng.pdf

WHO says no such thing 🤷‍♀️

I am glad t hear that, Time40.

My mother had it, 'fibrositis' was what she called it back then. It came and went throughout her life from childhood.

So GPs can diagnose fibromyalgia as per NHS guidelines?
@OldCottageGreenhouse - yet more evidence that your statement that GPs don't diagnose fibromyalgia is entirely false.
Incredibly telling that you still have not posted any links to the WHO evidence you kept relying upon.

Wow, this really exploded.
and, answered my question a million times over I think. 😔

for whatever it’s worth- I’m educated, a very high earner- work shy is absolutely not something you could ever call me. I have grated my absolute backside off my entire life. Mid thirties. Children, loving husband.

I have CPTSD, signicant childhood trauma. I am mentally well, stable. Unmedicated.

i live a busy and active life. I’m a size ten. I’ve had periods of capability where I’ve been able to significantly improve my fitness, but it’s never sustainable. The pain and other symptoms always get me in the end. Sometimes I get a few months and I convince myself it was all in my head or whatever “it” was has left me.

bloods clear. MRI clear. Rhumy cleared me.

I’ve briefly looked into support groups. I do not resonate. But my default has always been a gritty, get on and make it happen for myself type. I’m being forced to accept help and pull back now, but I can’t let this wipe my life out I’ve worked too hard.

But it is becoming unfunctionable. The fatigue is unbearable. The pain, random, widespread, unresponsive to painkillers. I’m sick of embarrassing myself in public when I start to lose control of myself (mind blank, dizzy, feeling faint, dissociated, confused, sensitive to light ) and someone notices. I just want to hide. I feel like I’m losing my life little by little. I have never been “well” not even as a teenager. Pain has been lifelong.

i have so much to live for and I have a life I adore. I am so fortunate but this? Some days I can see why others could fall into depression- it’s relentless. I live for the random good days. Hiding the severity is becoming exhausting in itself.

I don’t know where to go from here.

My CBT lady - as lovely as she was - told me that sitting down while cleaning my teeth would enable me to pace… 👀😂 that’s not pacing…

Personally I did find the CBT course useful but only because it was nice to talk to someone with more experience of CFS/ME than my GP.

I think it's a real illness, just not well understood. Most importantly, your pain is real, you aren't "making it up" and I hope that you can find solutions to help you feel better.

Feel free to pm me, OP. If PMs are back on yet? I can help with advice & tips. I’m not sharing it on here with all the idiots trying to cross examine everything I say!
Pain wise those I’ve found Transtec 4 day Buprenorphine patches to be life changing. I was in a wheelchair whenever I left the house, before the patches but now I rarely need it. You do need to be careful with them as they’re controlled medication but otherwise they’re a revelation. They also help with stiffness. I also have MS and the stiffness is so debilitating so the patches are a huge help with this. Best of luck

CBT helps people cope with all sorts of chronic conditions, not just pain. It makes sense it would help for real conditions.

The 'all in your mind' stuff can happen but is also a hang over from the times where psychology blamed everything on neuroses - or often blamed the parents, most often the mother, for almost everything. Fortunately it's evolved since then, but still has a long way to go as not everyone has caught up yet.

Lying about my diagnosis?! I can assure I’m not lying about my diagnosis love! I bloody wish I was! Go away

I've got no skin in this game, I'm just interested, and seeing as you kept posting about the WHO and what they have to say about it, I searched it up, here are the AI results below. I could find nothing from WHO on the subject of it being a neurological disease OR diagnosed by MRI, can you?

The World Health Organization (WHO) recognizes fibromyalgia as a disease and includes it in the International Classification of Diseases (ICD) under code M79, classifying it as a "disease of the musculoskeletal system and connective tissue".

Here's a more detailed breakdown:
WHO Recognition:
The WHO officially recognized fibromyalgia as a disease in 1992 and included it in the ICD.

ICD Classification:
In ICD-10, fibromyalgia is listed under code M79, within the chapter on diseases of the musculoskeletal system and connective tissue.

In the ICD-11 update, fibromyalgia was renamed to "Chronic Widespread Pain," but the term "fibromyalgia" is retained as an indexed term.

Fibromyalgia is classified within the chapter of physical health conditions, not the mental and behavioral chapter.

Symptoms:
Fibromyalgia is characterized by chronic widespread pain, unrefreshing sleep, physical exhaustion, and cognitive difficulties.

Diagnosis:
It's a diagnosis of exclusion, meaning other potential causes of pain and symptoms need to be ruled out.

Based on the one person I know well that’s got it, I’m very very skeptical

You are talking to someone who does work full time and “carries on” with life. There is a difference between fatigue and tiredness from living everyday life. Your post makes it quite evident that you haven’t experienced fatigue - you have experienced tiredness.

No. You're assuming i haven't experienced fatigue. I can assure you I very much have.

You've just proved my point though "mine is fatigue. Yours is just tiredness"

It is definitely real, but I suspect it’s a few conditions that will eventually be figured out. Which means treatment right now isn’t great.

I think fibro and a lot of other conditions can be improved with lifestyle changes - but not likely to be fixed. So I’ll try anything; e.g. eating fully raw makes me feel 30% better but takes over my life and isn’t sustainable. Getting 8h sleep gives a 2% improvement, warm baths make me feel enough better to sleep most days. So then I know what to add or subtract. My best is still worse than normal, but at least I can be functional. This week has been rough. I’m in a massive flare and doing my best.

Try reading the thread. The posts you have quoted have since been explained and I have corrected them! I never once said I was earning ANYTHING as a pilot ffs. I SPENT £89k on flight training before I was diagnosed!

I will happily provide proof of my diagnosis directly to MNHQ from my medical records.
I also advise you to stop troll hunting or you’ll end up getting banned.

Please don’t ‘love’ me.

edited to reply to a further comment