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?

When you get to your later 40s they will start dismissing all your symptoms as 'perimenopause'. That's another one they did to me, until I was properly diagnosed with what I knew all along.

I could type it again but I’m not sure you’ll understand on the second go if you didn’t get it on the first.

@OldCottageGreenhouse this is from the current NHS page on it. It doesn’t reference a definitive neurological test. And also references a GP can diagnose

@BrandonFlowersEyesWithEyelinerSorry to burst your bubble but Fibromyalgia IS a neurological disorder and is considered so by the WORLD HEALTH ORGANISATION! But you keep doubling down to save face. Good lad.

@WhateverfloatsyourgoatMy trust diagnoses via MRI.

I've had it over 5 years now. It came out of nowhere for me, one night just sitting sewing on the sofa when I suddenly felt like someone had poured cold water down my back. By the next day my skin was on fire and my limbs felt so heavy. They also ached and burned with lactic acid from things as small as pushing down a door handle or reaching up to take something down from a high cupboard in the kitchen.

It all happened so fast that I was worried I could be developing MS, so went straight to the GP. MS was quickly ruled out, and full blood panels - several of them, at different points - show nothing. I have no inflammation, no deficiencies, no muscle markers that would point to a problem. Seemingly, there is nothing 'wrong' with me at all, yet I experience problems with speech (slurring, stuttering, absolute random nonsense coming out of my mouth instead of what I intended to say), my bones ache, I am stiff and sore, I cannot bear any pressure on any part of my body because it causes intense pain and pins and needles. I wake up a thousand times a night because it is so painful to lie under my own weight. I now have to use an NHS-provided bath board in the shower so that I can wash myself without having to stand up and lift my arms over my head. My limbs constantly go numb. I experience crushing fatigue; even my face feels exhausted if I smile too much. I can pull a muscle for days just by taking a phone call and having to hold the phone up to my ear for a period of time.

I was part of a coping skills programme after diagnosis which involved correspondence with a physiotherapist and occupational therapist. One of those explained that one of the reasons it is believed that people develop fibromyalgia is because intense stress, PTSD, anxiety or other mental health problems, and constantly being in fight or flight mode, causes the nervous system to become permanently stuck in the 'on' position, and starts interpreting perfectly normal input as pain. This certainly fits for me.

I have absolutely no chance of working. I do receive some benefits since I did the WCA and they said I wasn't fit. But that's a whole other kettle of fish ...

I agree that fibromyalgia is a diagnosis based on elimination, and one size isn't really going to fit all - it's not as cut and dry as a lot of other conditions that often have quite a specific set of symptoms. But for me, yes, it is very real.

Ah got it. An aggressive keyboard warrior rather than someone that can engage. As you were

@JanglingJack I didn’t get over it, I’m still tired. Probably depression. I had a couple vitamin deficiencies back then also (vit d and b9). Exercise helps a lot with energy levels; however the people that accept their cfs diagnosis would say they are too tired (lazy) to exercise then they stay exhausted for years

Which trust is that @OldCottageGreenhouse

No, someone who answered your questions and then you came back with your smart arsed reply.

I have it and when I told a ‘friend’ now a not friend, she said, isn’t that a made up illness people say they have to get benefits?

That might be your experience but you don't have the same GP as other mumsnetters.

I’m genuinely interested as to this documented MRI diagnosis as all the NHS sites say there isn’t one.

If there is then that’s brilliant and it should massively cut down the false diagnoses

That's a 'google' result that you haven't clicked on.

Not great evidence I'm afraid.

I wish you no ills. But I stick to my research based opinion.

Not to make things too complicated but the whole idea of mental vs physical health is a weird throwback to medieval times when the church was giving out permission for people to do dissection and the agreement was that the doctors could have authority over the physical body but the church kept the soul/mind.

This concept of a body/mind divide was very successfully exported all over the world because western medicine is pretty effective and somehow it became one if its underlying principles . But it's not really how things work and pretty much everyone has experience of that.

We know that "mental health" conditions cause physical changes for example increased cortisol, changes to the way the immune system works etc. As a really basic example: most people have experience of getting a nervous tummy before exams or a job interview. And we know that physical conditions can effect mood and cognition... because your brain is part of your body. If you eat rubbish, sleep poorly, and don't exercise you'll soon find that your mental health suffers.

Fibromyalgia is a condition that has physical, psychological and social components and its really bloody complicated. Yes, it often has links with things like trauma and mood (although this goes both ways, being in pain does make you low in mood!). But that doesn't make it "less than" a condition that people consider to be completely physical (if there is such a thing!)

I have PoTS and I've seen it described as something attention seekers and people with munchausens say they have. I keep quiet about it. I take my meds, I eat healthily, my bmi is 20, I exercise where I can, I never drink, keep my flare ups to myself and get on with things as best I can.

Some people will never believe that invisible illnesses esp ones that effect women more than men like fibro or pots are real, or they will think that you brought it on yourself, or that you are exaggerating etc etc. I'm not wasting my time trying to convince them. I don't need their validation. I mind my own business and mind myself as best I can and fuck what anyone else thinks.

And?! You said it’s always middle aged women so I’m pointing out that I was 18!

Christ alive

Agreed @Snapplepie but people seem to froth at the very suggestion of a mental component

Nope, of course I don't know better. Which is why I asked the question - if it's neurological, how are GPs frequently diagnosing it without brain imaging tests? A question which wasn't answered in your response.

My friend had this and my god she fought it as hard as she could but I saw her suffering get worse and worse. When I was with her I'd massage her legs when they "went" because some how I had the "right" touch. But we lived an ocean apart. She worked most of her life and was extremely good at her work but it got harder for her. She suffered from clinical depression and CPTSD. She was one of the finest women I've ever known and when people belittle fibro it makes me so fucking angry. It is as real as any other pain you can mention. The pain is so real and so chronic and so bloody debilitating. She's not around. Died in 2023 and I miss her every single day.

Are you very young now @OldCottageGreenhouse? I can’t really find much about Fibro being diagnosed by MRI so wondering if this is a new thing.

Oh wow, I've never come across anyone else say it was caused by glandular fever. I'm 54, had glandular fever aged 12 and never recovered 100%, was diagnosed with fibro within a few years. I've been through all the usual 'it's all in your head' etc comments over the years, I worked full time, was a single parent and never had mental health issues so thankfully was strong enough to disregard all the ignorance, even that expressed by some doctors (like the one who told me I just needed to walk more!). I'm so sorry you've suffered from those shitty disease but it is actually kind of reassuring to hear that glandular fever may have caused it.

@SnapplepieNope, it’s actually really simple. It is now considered a neurological disorder and is linked to FND.

www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome

You know the main diagnosis criteria for ME is post exertional malaise? Do you know what this actually means? Because I really don’t think that you do 😂