Fibromyalgia diagnosis process…?

[Zipkey]

I’m 26 and in March my GP suggested I either have rheumatoid arthritis starting or fibromyalgia.

I have had blood taken which picked up iron deficiency anaemia. I had a hand X-ray which didn’t indicate arthritis. High strength iron tablets and no improvement on joint pain.

Tomorrow I will have a telephone conversation and an in-person GP appointment.

What is the process for being diagnosed with fibromyalgia? I think I’m being sent to rheumatology next for tests.

I have very bad hand joint pain, foot joint pain and more recently my knees have started to become very sore and stiff. I also have what feels like skin bruising everywhere (with no real bruises). I am exceptionally tired after a work day and am absolutely debilitated and am in bed by 7pm.

What was your experience?

Your GP sounds like they at least have a clue, many don't when it comes to picking up fibromyalgia as a possibility.

My experience was fairly typical. Visited the GP with general rundown/exhaustion/sore skin/aches and pains over a 2-3 year period to be told it's probably menopause/lifestyle, I need a holiday (yep, that last one actually happened). Multiple blood tests yielded no more than a Vitamin D deficiency and problems continued once that was resolved.

Had a fabulous sunshine holiday in 2019 but felt like shit for much of it so went back for more blood tests. Lots of desperate googling kept leading me back to fibromyalgia so when my bloods came back 'normal' again, I cried asked to see whatever specialist dealt with it.
Sent to a rheumatologist who went through a series of questions and examined pressure points. Agreed with my googling. This was January 2020 so the only 'help' I've been able to access was a zoom seminar which taught me nothing.
Hydrotherapy/physiotherapy was suggested but that's been cancelled.

Advised to just keep myself on an even keel and not be tempted to overdo things on a good day when I feel more energised.

Diagnosis is partly a relief (I'm not going mad or making things up) but also depressing (I'm stuck with feeling like this forever unless they find a cure).

Studies are now indicating that it is an autoimmune disease rather than psychological which is something that sufferers have suspected for a long time.

I was diagnosed with fibro 20 years ago in my twenties. I had a severe virus and never seemed the same afternwards. Constant aching in my joints, extreme fatigue, loss of concentration and sore spots to touch all over my body. Blood tests showed nothing. The NHS was rubbish to be honest and as far as I know before rheumatology will consider a referral for a fibro assessment the GP has to make sure he has ordered a range of blood tests first. In the end for me - a friend of mine who was a nurse and worked in rheumatology spoke to a rheumatologist who mentioned that my symptoms could be fibromyalgia - I had never heard of it.

Eventually I saw a rheumatologist privately. The assessment was done by recording my symptoms and touching various spots all over the body which are sore to touch/any pressure. I think there have to be a certain number of these pain spots for a fibromyalgia diagnosis. I was also referred to a chronic pain clinic. Some areas now have a multidisciplinary team which incorporates all of that at hospitals that deal with fibro patients. There is a fibromyalgia association which is good and some good books about fibro on amazon if you are diagnosed with it.

Fibromyalgia was a diagnosis by exclusion for me. I went to my gp multiple times for all kinds of blood tests and, after monitoring caused by liver problems, everything but fibromyalgia had been excluded.
Unfortunately fibromyalgia has a lot of symptoms for me and my gp dealt with the most pressing ones, one at a time until I had some quality of life