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 know people who have it. It can be debilitating but agree it’s really unknown what the cause is and cases differ but you can say that about a lot of illnesses (my DD has MS and it’s different for different people).

Thank you.

I don't know whether I made myself clear, but luckily I don't have fibromyalgia but I do have a damaged nervous system - peripheral neuropathy.. But thats becoming less peripheral.
Which is a neurological problem too? Mine is degenerative.
Neurological means it affects the nervous system yes?
I think some people think neurological means that it's all in the mind.

Sadly not. I'll never be able to drive a car again, adaptations or not... Can't feel my hands either. Apart from the shooting pains of course!

Guidance from the royal college of rheumatology is that fibromyalgia should mainly be diagnosed and managed in primary care (by GPs) now. Rheumatology just don't have the capacity to see fibromyalgia cases anymore unless there are some symptoms of inflammatory joint disease and further specialist testing is needed. But if you were diagnosed a while ago this wouldn't have been the case.

It really doesn't.

A diagnosis of fibromyalgia can be made in primary care and there are no additional management strategies available in Rheumatology that are not accessible in primary care.
As there is no secondary care commissioned service for patients with fibromyalgia in Cornwall -
Referrals for fibromyalgia will be rejected.

I have fibromyalgia and have done extensive research and have not seen anything proving this. you're going to have to do better than that 🫤

It must vary by region. GPS diagnose it in my area. I saw a rheum as other things neede excluding, but the gp would otherwise have diagnosed. That was about 7yrs ago.

Certainly not the case in my trust and that’s one of the biggest outside London!

Firstly, I'm so sorry to hear about what you're going through. I wish you all the best and hope you get all the support you need 💐

To answer your question, I absolutely believe it exists. A dear friend of mine has it, I believed her immediately when she told me she had it. After learning about her diagnosis I admired her more for being such a lovely person despite what she goes through on a regular basis.

Unfortunately chronic pain conditions like fibro can be seen as 'invisible illnesses' and as such this can cause them - very unfairly - not to be taken seriously. This in turn cause immense stress and distress for patients, which ofc isn't good at all for mental health. But you're not alone. If you do have a diagnosis it might be worth checking out a charity dedicated to supporting those with the condition, you might be able to get some good advice from those with lived experience as well as a support network with people who know what it's like.

I think I agree with this, the few people I know of who have all starred with anxiety, depression or drug problems - then pains, then a Fibro diagnosis and PIP claim. I think they genuinely feel pain etc but it seems they only recover once their mental health is more stablep

I don’t need to do better than anything! It’s a fact. Are you unable to use Google?

I cannot believe a grown woman is arguing that disabled people aren’t really disabled because SHE hasn’t been told it by a neurologist herself. Wow.

I beg your fucking pardon?

I wonder whether we just got issued a Friday afternoon body, when the body makers were rushing to finish and clock off! Heightened senses, travel sickness, highly strung, over sensitive, dodgy collagen… add prolonged stress or a trauma and ‘Bam!’. Body goes haywire.

I do have a strong opinion on this. I unintentionally offended a lady on another thread by sharing it and I really am not taking pride in causing offence to others like her.

But this is my honest opinion:

CFS/ME/Fibromyalgia are NOT medical conditions. They are not diagnosable by any tests.

They are synonymous with "we've excluded all causes, and have no answers"

It's a functional syndrome.

Research shows your typical sufferer is a middle aged female without higher education with concomitant depression or anxiety. That's not a sneer. It's a fact. It does not mean ALL sufferers will fit this.

Drs realise that many people for whatever reason do not like a mental health diagnosis for many different reasons. Stigma still exists with these diagnoses. So, they give the patient a physical syndrome, which validates them , and also makes them go away from the drs office.

I believe the symptoms absolutely. I believe depression better explains them. That's also not a sneer. I've suffered depression in the past, and it's a visceral reaction I feel when I imagine being back in that hell hole. When I think back, I had so many IBS like symptoms (I don't now), I had aches and pains in my arms and legs. The tiredness was all consuming, I'd spend my days off just sleeping in the late mornings, sometimes for 3 hours and still feel shattered. But when I treated the depression, these symptoms more or less resolved. Depression is very real and it causes all manner of physical symptoms. You're hyper aware of pain etc. i never sought help for those symptoms as I knew deep down it was depression related and I'd given up caring much at the time anyway. But, if I had sought help and denied I was in mental distress, no doubt I'd have been diagnosed with fibromyalgia.

Furthermore, CFS/ME/fibromyalgia/long COVID/depression/health anxiety/IBS often co -occur...

On another note, I have seen (middle aged women) palmed off with 'fibromyalgia' when they've later turned out to have rheumatoid arthritis or lupus or worse. I think these subjective functional syndromes do no favours to the sufferer.

One last point. It does causes cognitive bias in healthcare professionals. If you have fibromyalgia on your past history, any future complaints of pain are likely to be taken less seriously and attributed to 'fibromyalgia'. You could be less likely to be investigated.

@OldCottageGreenhouse I was diagnosed with Fibromyalgia 4 years ago…. By my GP. I had not at that point seen a rheumatologist. It it’s within the guidelines in my area that GPs can diagnose. Our local rheumatology service will no longer accept referrals for fibromyalgia.

I think in the future doctors will find out what causes fibromyalgia, and it will be treated properly rather than patients being fobbed off. I believe it is a genuine illness.

And the evidence your opinion is based on is...?

But, I should also say that I think anxiety and depression are also physical illnesses too. When I have really bad depression I tend to have aches and pains all over my body

what I wrote wasn’t bollocks. It happened. Doctors do diagnose it ALL THE TIME and also it’s probably diagnosed in lieu of them knowing what the fuck is actually wrong.

your aggressive and reactive posts aren’t helping anyone

I was diagnosed with Fibromyalgia by a rheumatologist last Summer. I was, also, diagnosed with hEDS and probably POTs. I have OA and other disabilities. I don’t tell anyone I have Fibromyalgia because most people automatically think it’s a malingers disease.

I remember being a child and not being able to take a deep breath because of rib pain. My mum fobbed me off as a hypochondriac. I got IBS quite young, was diagnosed with Menieres disorder and balance problems when I was 25. I can’t stand a duvet on my legs, certain clothes hurt me, I can’t make plans in the morning because I don’t get going until lunchtime. I weigh 7st 12, so weight has nothing to do with it.

There isn’t a bone or a joint in my body that doesn’t hurt and when my joints flare up that area comes up in hives which makes me scratch until I’m bruised. I’m, also, losing my peripheral vision and going colour blind. Whether that’s linked i don’t know. Tomorrow I’m going for tests to see if the nerves are constricted in my arms.

I refuse to go to support groups because there’s a lot of black cat syndrome going on. I absolutely loathe the spoon theory. You can either get it done or you can’t, spoons don’t come into it.

I hope one day people with fibromyalgia won’t be labeled as lazy hypochondriacs, but I won’t hold my breath.

This is my thoughts entirely

(I've written quite a long post explaining further) But yours is more succinct!

@JanglingJack That's right, neurological means that it is a condition affecting your nervous system (brain, spinal cord and peripheral nerves). When I'm explaining how pain works to people I generally say it's neurological not psychological because the idea that it's all in your head or you can think your way out of it is prevalent.
Gabapentin is absolutely appropriate for peripheral neuropathy.
The pain system is really quite complicated and it's not unusual to find things get a bit blurry or change over time. Even being in pain for a prolonged period of time can change how sensitive everything is. If you havent, it's worth having a look into how pain works because having that understanding can make it less distressing and worrying when things to do flare up or change. The explain pain videos on YouTube give a good overview and lorimer mostly does a very watchable TED talk (also on youtube).

YES THEY ARE diagnosable via tests now ffs. Fibromyalgia is diagnosed by brain imaging tests. It’s a neurological disorder! Stop this misinformation please

Not the same but I was dx with chronic fatigue syndrome 12 years ago and have never accepted that diagnosis, pursued benefits for it or told anyone I have it. I don’t believe cfs is a real thing and that fatigue has real causes that doctors are too lazy to even look at.

@BrandonFlowersEyesWithEyeliner

Explain what you mean here?