Fibromyalgia

[Betsy50]

Hi folks hope you are all well. I seen rheumatologist yesterday so to get ultrasound on hands to see if it showing inflammation but she said if it doesnt its heading towards fibromyalgia. My question is has this happened to anyone else ? I'm truly at my wits end

[happytulip]

Have you asked this on the NRAS website on HU. Lots of people with RA have fibromyalgia too. I'm just wondering if they can answer your question on there as RA can be a specialist area?

[Betsy50 in reply to happytulip]

Hi happytulip thanks for replying. No I haven't you think I should ?

[happytulip in reply to Betsy50]

Definitely. NRAS is on HU and is a very supportive site. There is alot of knowledge on there about Rheumatic Disease and the NRAS helpline are very supportive.

[cyberbarn]

yep. The first rheumatologist didn't listen to me, just assumed that I had fibro. But I know what the criteria is, I know I don't meet it, and I know he didn't even examine me or ask the questions he should have.

So after a formal complaint against him (additionally secretary refused to pass on to him that I disputed the diagnosis) he asked for me to have a second opinion. This finally happened at the start of the pandemic so not great.

My new rheumy did listen a bit better, didn't suggest fibro (LOL! I wonder why!) and sent me to ultra sound on my hands only. Their idea is if there is inflammation in the hands, there probably is elsewhere. But the US operator was a bit of a dick, denied all the findings of everyone else (rheumy, physio) and said there was no sign of trigger fingers so everything was fine.

The funny (not funny) thing is four years ago I had worked out I most likely had psoriatic arthritis. Finally a couple of months ago the rheumy reluctantly agreed. But she still hasn't done all the tests she could have. And if they were done right at the beginning we might have got further faster. It was a huge flare in my hips and the knowledge that several members of my family have psoriasis that finally tipped the balance.

It is too easy to diagnose fibro, in particular in women. and one of the problems is that it then stops clinicians from following up other possibilities. For example, with fibro on my record the hand specialist physio refused to admit there was anything wrong with my hands, told me 'you have good range of movement, there's nothing wrong' (I have Ehlers-Danlos syndrome, of course I have good range of movement!). So I made her look at the x-rays and asked if the big lump on my finger was an osteophyte or inflammation. She dismissed me again, but did look. Then had to admit that yes, I do have a large osteophyte on that finger. But I didn't get an apology or advice on my trigger fingers.

The problem is, fibro is a collection of symptoms that could be caused by loads of different things. So if you fulfil the criteria, including the psychological criteria, then fine, but if you don't, keep pushing to get a better diagnosis.

[greekqueen]

Hi I was seen by a rheumatologist in 2009, my hands were looked at, said they were swollen, said to me she doesn't like to give out diagnosises, said to rule out sleep apnea first as I was obese and on list.I did have mild sleep apnea, was given amitriptilyne after rheumatology appointment and have been on them ever since. No diagnosis but fibromalgia does get the blame by 'professionals' whenever any kind of pain comes up, covers their bases that way 🙄

[Tjwa]

Hiya

Please do not let them dump you with the Fibro tag without further investigation

I've been misdiagnosed so many times over 23 years.

I still have no proper diagnosis to all my complaints. They have now palmed me off to the pain clinic with Fibromyalgia.

After years of no diagnosed then psoriasis arthritis then early onset osteoarthritis then fibro (who put that on my chart is still a mystery)

A second opinion at a different hospital got me a diagnosis of psoriasis arthritis then the Pandemic hit and oops sorry you have fibro.... please go to the pain clinic.....