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?

I have not made any ableist comments. I’ve simply asked you - repeatedly - for the evidence of the things you’re suggesting I.e it’s only diagnosed via MRI, the WHO now define it as a neurological disorder. As I say, I had a GP diagnose me with it many years ago and I’ve always been interested in the evolvement of it as a diagnosis

If you say so! I’m coming across perfectly fine thank you, I’m defending myself against two little bullies who seem to think they know better than neurologists! 🤣

@WhateverfloatsyourgoatI never once said it was ‘only diagnosed by MRI’ I said I was diagnosed by MRI. Every trust is different but mine does it by MRI as we have a big new MRI centre

Thank you. That's a much more helpful reply than @OldCottageGreenhouse's bizarre response.

It’s recently been proven to be a neurological disorder

@Doodlessmoodles what a horrible fat shaming comment
I’m a size 8 and have fibromyalgia it affects smaller people too size doesn’t come into it

B12 deficiency is the first and easiest to be tested. It's not!

@hayleyI haven’t lied about anything love! You just don’t know your facts.
I started flight training at 14 in Canada. Got my commercial licence by 18 (you could in those days) and was due to take my ATPL once I turned 19. The month before my 19th birthday I was diagnosed. I was then part of a trial in 2021 in my local trust where 300 already diagnosed fibro patients were given MRIs for various reasons but but also to confirm the diagnosis was correct.

You owe me an apology

My apologies @OldCottageGreenhouse . When you said this

Fibromyalgia is diagnosed by brain imaging tests. It’s a neurological disorder! Stop this misinformation please

I assumed you meant it. Not that you didn’t. Sorry

In addition to my post above, all 3 were diagnosed well before 40, all 3 no larger than size 12 so the notion that it's depressed, overweight 40 year olds couldn't be further from the truth.

However, I can see who people searching for a diagnosis and repeatedly getting nowhere it's no wonder they might end up depressed and it's very difficult to fight any weight issues when you are cronically exhausted and in pain.

This thread reminds me of all the crap I used to get before my endometriosis was diagnosed. Some people just have no ability to step outside their own experiences and realise that things that are different for others aren't just made up.

Ah right so you never actually had a job that paid 89k a year as the fibro diagnosis meant you couldn't ever work in that field. That makes sense, I hope you were able to find something rewarding to do as you got older

Woah. What year was this that a 17/18 year old pilot was earning £89k? In Canada. 🥴

@WhateverfloatsyourgoatYes because YET AGAIN! Fibromyalgia is diagnosed by SOME NHS trusts with imaging scans.

Sick to death of repeating myself

Only it’s not repeating is it. It’s an ever changing story.

it’s fine I get it. You’re passionate about a subject. But lying just makes you less heard not more

Calm down love, it’s almost midnight

I have known a few people diagnosed with fibromyalgia and one thing they have in common has been trauma. Having read "The body holds the score", I wonder if the illness is a physical reflection of this. I am in no way suggesting that their symptoms are not real and often incapacitating. But just an observation.

I haven’t lied about anything! 🤣 Nothing at all. Your reading comprehension just needs quite a bit of work……

If you think I’m a troll, report me to MNHQ but troll hunting is against talk guidelines as far as I’m aware

You very clearly do not know what "bullying" means, so I'm now very much in doubt you know what other things mean.

You've done yourself no favours on this thread. Luckily, there will be thousands upon thousands of people who are reading this who are not signed up to Mumsnet or not commenting. They will see both mine and other posters comments and yours. I feel embarrassed for you. I'd go to bed and take a break from this if I were you.

I won't be replying to you any further. It's hard to engage sense with someone that's being unreasonable.

Do NOT tell me what to do. You try being cross examined by some random kid over your finances 25 years ago!

I was diagnosed with it in the late 90s and I absolutely knew it wasn't.. it turned out to be thyroid disease, diagnosed almost too late (almost in a coma ) a few years later...

most of us will have had endless blood tests to be diagnosed with fibromyalgia/ME (and even after diagnosis to ensure we don’t have any deficiencies adding to our condition)… I don’t understand why you think a GP means there isn’t other investigations they do other listen to someone’s symptoms??

My friend was a US size 4-6 when she was diagnosed. Over the years she put on weight as exercise became harder, she became more debilitated and sometimes food was her only pleasure. She was never largely or massively overweight but she did put weight on and was probably US size 12-14 toward the end of her life. And beautiful. It's not some "fat person thing" which is pretty a pretty crass take on it anyway.