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?

Well-educated people, younger people, slim people, people in well-functioning relationships, people not traumatized are also diagnosed with fibromyalgia.

They just keep quiet about it knowing the condemnation from their surroundings.

Many people with this diagnosis work. There is very little support from society so these patients often have no chioce than carry on paying often a high price on mental health.

It is often the mother in your child's class or neighbour living next the door that the other mothers find lazy tbh. It's often people simply are seen as lazy because it's better than bring seen as faking an hard to explain illness.

Fibromyalgi is very very real and people really suffer with very little understanding.

You said you were diagnosed at 18 years old - that's a young age to be earning 89k a year as a fully qualified pilot!

"OldCottageGreenhouse · Today 22:43
I Beg your ever loving pardon? I was diagnosed with fibromyalgia by Rheumatology at 18 years old! Fibromyalgia is NOT diagnosed by GPs ffs. It has also been PROVEN to be a neurological disorder. Get your facts right before spouting your ableist poison"

The people I know to have it are also largely or massively overweight, I’d like to hear from slim women that have the condition as so far I haven’t come across any

You're not coming across well. You're comments are getting a little crass

I was a size 8-10 when I was diagnosed. Does that help you?

I can’t find anything from the WHO on this being diagnosed via MRI as a neurological disorder - can you link please

Both young women I know who were diagnosed were very slim too.

I was 5’8 and 8 stone when diagnosed.

how fucking dare you. Reported

I’m currently lying in my bed in agony, I wish I was making up this pain. My knees, inside of my thighs, my lower back, my ribs, my shoulders and even my wrists are hurting. My lower back probably the worst right now I’m close to tears. It’s going to be a long night.

Diagnosed with fibromyalgia 10 years ago by a consultant rheumatologist. I manage to still work part-time but only if I come home and sleep afterwards. I miss so much of my family’s life as I’m always sleeping. Think of when you’ve been so exhausted you can’t see properly, you can’t think, that’s how I feel a lot of the time. I live on caffeine not great but essential.

I self-inject with Vitamin B12 as well as take loads of other vitamins, eat a healthy diet and have never been overweight (before someone tries to fat shame others and tells them if only they’d lose weight they would get better).

if I were to stop work and claim ADP (Scottish version of PIP) I’d get £290 odds a month or. £70 a week, hardly worth fabricating an illness for £70 a week is it?

There’s plenty in the support groups I’m in. And like I said earlier, for those that are overweight with the condition could be that way because of the condition.

Oh, and I was a size 12 when diagnosed. I worked nearly full time and had done since my first paper round at 13.

I've had a job since l was 14 and lm a size 10-12. Took less than a years maternity leave when l had twins. I work full time and have 2 under 2. Sorry to ruin the fibromyalgia myths!

I know 3 people diagnosed with it.

One was later diagnosed with Lupus and another with MS.

The other hasn't got any further diagnosis.

None have mental health issues. All 3 look after themselves well from diet/health perspective.

Whether it's a diagnosis of last resort as everything else has been ruled out or not doesn't really come into it. There is donethubg really wrong with people who get thst diagnosis & they are suffering.

I don't believe it's depression related or all in someone's head for sure. Yes, it may be a case of not finding the underlying medical issue but there's no denying there's something wrong.

It’s honestly grim to see the fatphobic, ableist comments on here. Even if I had been a size 22 when diagnosed, it shouldn’t mean that the diagnosis was taken any less seriously.

I think it definitely explains some sufferer's symptoms. Zinc, too.

Oh, I can answer this one!
It's neurological in that it affects your nervous system (brain, spinal cord and nerves) but our current understanding is that it's to do with the way this system works. There isn't any imagable lesion.

There are some changes to the nervous system that have been suggested by animal studies, including changes to the amount of painkilling chemicals produced in the bodies of beings with fibromyalgia symptoms. We can also see that people with fibromyalgia have increased activity in the parts of their brain involved in pain with some functional mri studies, but that's imaging that isn't widely available and is very expensive and time consuming to carry out so not practical for use in this context. So we use clinical signs to diagnose instead.

To add- the GP being able to diagnose it is very telling.

You can diagnose it based on a patient describing symptoms? ...

Rheumatologists/NHS trusts were likely spending millions ordering rule out tests that were in a certain demographic that fibromyalgia fits.

Therefore they've batted it back onto GPs. How can the GP establish who is describing fibromyalgia and who has actually got rheumatoid arthritis for example? I'll tell you how: it'll be the 40yr old overweight woman with depression who'll not be investigated further.

Which concludes my point that the functional syndrome diagnoses benefits nobody

oh @OldCottageGreenhouse unravelling a bit? I don’t think asking your NHS trust and age will lead anyone to your door. But it might help validate your increasingly bizarre claims

Lucky for some…

the only person I know who has had this was a workshy, neurotic person obsessed with themselves and their constant illnesses which gave them an excuse to get out of what they didn’t want to do but miraculously left them with the energy for the things they did want to do. Leaving his poor wife to do everything.

I have no doubt it’s a real thing for some people, but not him. Altho I’m sure he convinced himself. Before deciding it was another obscure disease.

👏🏻👏🏻👏🏻👏🏻👏🏻 Well bloody done you absolute hero! I know how tough that was for you. I can only imagine giving birth twice in the same day, too! Once nearly had me on the floor! 😆

I believe it's largely mental, or that at least most people 'diagnosed' with it have a level of mental illness that causes/exacerbates physical symptoms.

I suffered quite badly with some mental issues some time ago and it caused all manner of physical symptoms, so I have sympathy with anyone in that position.

What a load of hyperbole.

Nothing of the sort has been said. you're hearing what you want to hear.

You're not coming across well.

I piled on the weight slowly after diagnosis, not really surprising as it severely affects your mobility. People will often struggle for years before a diagnosis so it's no wonder most are already overweight.

Increasingly bizarre claims? You mean the ONE claim which is FACT and I’ve stated since the beginning which you refuse to accept despite me providing evidence?! 🤦🏼‍♀️ Me unraveling you say?! Here’s a mirror 🪞