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?

Exactly 👍

Yup. I went to the GP multiple times with pots symptoms and was told I was just anxious. I was made to feel really small, hysterical and rather stupid on multiple occasions. Then a new Canadian GP started in the practice and straight away said this sounds just like pots. She did a standing test and referred me to a cardiologist where I was diagnosed. I had symptoms for years, since I was 21,I was diagnosed in my 30s. I questioned my sanity on more than one occasion, I knew I wasn't anxious but when multiple GPs were telling me that I was it like some kind of medical gaslighting and it messes with you.

If it wasn't for my dhs urging that I keep going back to the GP because he could see that something wasn't right I would have just left it and felt like shit. Now with meds and a better understanding of what's happening in my body I am so much better and am aiming to run 39km for my 39th birthday next month.

Women are fobbed and not believed by medical professionals and fools in real life and on forums all the time. Better health care for women is badly needed.

My symptoms started when I was about 44. My periods stopped suddenly when I was 50, without any other menopausal signs leading up to it. My fibromyalgia more or less disappeared over the next 6 months. I have occasional flare-ups, usually post-viral, but nothing like the symptoms I had in my 40s. I found that opinions of fibromyalgia as a meaningful or useful diagnosis varied even among GPs in the same practice. The most useful advice was to keep moving, to get plenty of fresh air and daylight/sunshine. I probably pushed myself too hard at times, but it's easy to see how it can severely impact your quality of life. It was profoundly depressing when it seemed like it would be a lifelong condition.

@0ohLarLarAbsolute nonsense! Do your research it’s a neurological disorder

What the fuck has that got to do with you? How dare you think you can police what time I’m up?!?!

Read Suzanne O Sullivan, It’s all in your head, op

I’m getting tired just witnessing the level of hysteria.

You’re embarrassing yourself and you’re heading towards a total ban from Mumsnet so I’d be careful if I were you. This is bullying and you know it.

I think the one swearing at everyone and shouting in capital letters is probably more likely to get banned.

is a symptom of fibro a lack of social awareness?

How on earth does one shout on a forum?
Also swearing is not against talk guidelines!
•Can’t stand it when a woman defends herself. •Must put her down and try to portray her as ‘unhinged’

CBT is all they can offer because there is usually no other treatment that can be offered (especially for ME). It is helpful because it focuses getting you to accept that you have a (currently) incurable illness and helps you think about strategies for coping with your illness. I have had CBT for ME and I have had CBT for severe anxiety/agraphobia (which came after my CFS diagnosis for anyone who then tries to say my condition was caused by mental health) and while they may be the same techniques, they are used in very different ways. And of course, it’s going to be one of the most effective with barely any other treatment options.

No, you shouldn't.

I have severe fatigue. That doesn't mean I'm asleep by 9pm. You can be absolutely shattered and still not sleep well. In fact, often very severe fatigue makes you so exhausted that it ruins your sleep. It's like the sleep you get when you're drunk - you pass out hard, but you don't sleep well, and you wake up feeling bruised and worn out.

I am a woman, and I am good at defending myself. I defend the right of women to defend themselves.

but you are coming across as unreasonable and hysterical. You don’t need to react in that way.

im choosing to disengage and go to sleep now. Perhaps think about doing the same.

Clearly someone who does not have a diagnosis. Waking up daily with constant pain is not psychosomatic. Being unable to do things like cleaning or hoovering without crippling yourself isn’t either. Knowing that going out for the day will leave you drained and exhausted for the following few days isn’t fun either. Yes there is a poor mental health element- that’s because it absolutely shit not knowing what part of your body is going to feel broken when you wake up- each and every day. Struggling to remember names and words when you have brain fog is crap too. As others have said there are links with autoimmune issues and more recent studies are saying childhood trauma. It is a thing! To the naysayers- Maybe do some research before you spout drivel.

Whether they do or don't, it's still a myth that exhaustion means you sleep early and well.

@WhateverfloatsyourgoatWhy should I? It gets totally ignored and little bullies will spin it to try make me look unhinged! Because I’ve defended myself and other sufferers! Pathetic

And what makes fatigue go from "fatigue" to "severe fatigue"

I'm always sceptical when "severe" has to prefix a syndrome.

Ahh so defending myself against ableism = hysterical ✍️ got it! 🙄

Hope this helps - a google was all you needed to do.

@OldCottageGreenhouse most trusts can’t afford to use rheumatologists to diagnose fibro anymore so GPs do as per NHS guidelines. Which trust is only diagnosing via and rheumatologist and using MRI scans for all too?

Apparently my image is under review but if you google chronic fatigue and insomnia, you’ll get there lol.