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?

Low doses of amitriptyline or nortryptiline, like for shingles pain and other neurological pain.

I find it settles everything down, takes the edge of a heightened reactivity.

My irritable bowel has settled, my over sensitive hearing and smell has settled, I can go out without sunglasses.

Don’t accept it as a sentence of lifelong disability. Keep working on lifestyle management and health. I’m still limited but am a different woman to who I was at the point of diagnosis.

I have autoimmune conditions and shocking mental health from a child. I'm interested in it. I'm also interested in Gabapentin as I take 900mg a day and am unsure really what it does, because sometimes I'm not in pain. But pins and needles constantly is bloody annoying, however my feet have no feeling....

I can feel like someone has shoved a red hot sewing needle under my toenails or I can stand barefoot on a pavement that is literally burning me and not feel a thing...

I agree. I’ve yet to meet someone with this or a FND diagnosis who hasn’t experienced significant trauma in their life and/or has poor mental health.
That doesn’t mean it doesn’t exist or is “made up” etc.

I have MS and don't know anyone with Fibro, but some symptoms people are mentioning sound similar to my MS symptoms.

That does make me think it is an autoimmune illness, hopefully becoming clearer with more research 💐

I have seen people make the most real progress with CBT.
Gaining an acceptance that "I have this and it isn't going to go away" can be the key to unlocking learning how to live with it.
Look at what you enjoy doing, what you get the most value from and prioritise that. Using every short cut in the book if you have to.

Be careful with some online self help groups, there are some very odd charlatans to be found there who will try to sell you all manner of unresearched and unregulated treatments.

Some illnesses that weren't experienced in other countries are now becoming more prevalent in non-Western countries. For example, Crohn's Disease was rare in Asian countries but is now becoming more prevalent there.

I think the increase in autoimmune disease has a number of factors I won't bother listing, but all the result of negative human impacts on the world, even if some have positives as well.

Overstimulation.
Compare life now to life 50 years ago. There’s no natural rhythm anymore- noise, bustle, work all very intense. No off switch. Less support, community.

And poor food.

I’ve noticed that diagnoses that are just labels of what the patient said do get treated with suspicion.

So the ‘tired’ conditions get stick.

It’s also a fact that stress makes everything worse in your body and being suddenly in exhausted pain, with no explanation or treatment, and barely able to function, is very stressful.

In the 1950s they thought MS was a made-up disease for slackers too.

I get flares of an autoimmune disease (with very visible symptoms) that are notoriously like fibro. I’ve been very taken aback about how sore it is - the pain sends tears jetting out of your face.

Having said that, I know fibro people who’ve taken a flying leap into dependency and ‘disability’.

We all do, especially the ones who somehow make it out to get pissed on Fridays.

It’s totally crap- mine is in my legs now. It used to be in my arms so badly I had to have an auto car because I couldn’t change gear!
It’s an utter crap situation to have something wrong with you that so many people think you’ve made up, or exaggerating, or you’ve invented it to get sympathy.

Have you actually met anyone with fibro? My elderly mother was diagnosed but I believe she was seronegative sjogrens disease. Now been diagnosed poly myalgia rheumatica causes intense pain also classed as autoimmune. I her daughter am positive for sjogrens/ CTD, ckd Raynards all autoimmune diseases even my grandma had psoriasitic arthritis another autoimmune condition strangely enough we were all nurses. Not sure your comment is very helpful & quite unkind to people who are suffering with it. None of us could be classed as lazy, my poor mom worked until she was 71. Certainly not in our heads.

I'm prescribed duloxetine, gabapentin, naproxen, omeprasole, cocodamol, vitB12 injections and high strength vitD. All it really does is take some of the edge off the pain with no mitigation off any of the other symptoms which are myriad and diverse. But I have no mental health issues and it's not "in my head".

There is a huge amount of ignorance on this thread.

@Sugarnspicenallthingsnaice there have been some interesting articles recently about the increasing ‘toxicity’ of Western lives, and impact on health, including autoimmune conditions. Definitely seems to be a factor with increasing inflammatory conditions etc.

I'd want to know that everything else has been ruled out. Fibro is given too easily as a diagnosis by GPs who haven't exhausted other avenues. At the very least I'd expect bloods, inc full thyroid, vitamins, ANA etc and scans inc a ct plus a referral to Rheum.

There are so many other things that it could be - ra mcas, pots, vasculitis, Eds and numerous other autoimmune diseases etc that I'd want tests for all of them before accepting a fibro diagnosis.

I was diagnosed with fibro. It took an arterial haemorrhage and weeks in icu to determine that it was actually a very rare autoimmune condition. Drs need to think zebras, not horses.

I was diagnosed with fibromyalgia fairly recently.

I feel like the drs have accepted that I’m in pain but can’t actually find a cause so have labelled it as fibromyalgia.

I haven’t really spoken to anyone about it as I haven’t found it a helpful diagnosis. The people who I have seen talk about it, I am talking Facebook groups, seem to make it their whole personality and there seems to be a competitive ‘can’t do’ attitude.

Wow. Just coming back to acknowledge all of the posters who seem to ‘know’ something despite having no relevant qualifications whatsoever.
I’m very glad I don’t have ‘friends’ like these people.

& @MrTiddlesTheCatYou are both incorrect! Fibromyalgia has now been proven to be a neurological disorder and they are trying to have it renamed as FND

Yes !

I feel it’s a diagnosis that drs give middle age women & have to do nothing about it as there is not cure or treatment.until medicine starts listening to women about their pain nothing will change.

The people I know with it were diagnosed early 20s or even late teens.

From what I see in my own life, people with fybromyalgia tend to have a history of abuse, trauma and mental health problems. It tends to affect very sensitive /ND women whose bodies just give up.

This is utter bollocks!

1. Fibromyalgia was proven to be a neurological disorder in 2016
2. Fibromyalgia is not diagnosed by GPs ffs!

I feel like screaming with the fucking misinformation being spouted on here these past few days. MNHQ where the f are you?!

Your last sentence is the reason I don't generally tell anyone about my diagnosis. It is definitely not a defining part of my personality. Even some medical professionals don't try to disguise their disdain for the condition.

I find the FB groups quite depressing too. I unfollowed them all and only catch up now and then.

These pics are about ME but relevant to Fibro too, I think.

@OldCottageGreenhouse in many areas rheumatologists now won’t accept referrals for suspected fibromyalgia, GPs are expected to diagnose and treat.

Where is your proof of this drivel? What are your qualifications?! It is NOT a mental health condition for the love of god. It has been PROVEN to be a neurological disorder.

I remember thinking at the time this was announced that it was indeed a neurological disorder, that this is going to go under the radar and we’re going to be battling this ignorance for decades yet and here we are.