Different diagnosis: I have had FMS for... - Fibromyalgia Acti...

Fibromyalgia Action UK

56,280 members64,731 posts

Different diagnosis

Diamondpainting profile image
14 Replies

I have had FMS for over 20 years without any treatment except physio and scepticism. I was diagnosed with RA 9 years ago after sepsis and have been treated for it ever since. My rheumatologist has just told me that I am in remission for the RA (even though 5 weeks ago I had a high disease activity score) and has taken me off all my RA medication. I know this should be a cause for celebration, however, although he acknowledges the fibromyalgia, it's back to the drawing board with being sent links to fibro self help sites and pain clinics, to which I went for years before the RA diagnosis. I am in so much pain and so tired. Is it reasonable for me to be worried about the treatment/seriousness with which my pain levels will be taken now I no longer have RA or should I be grateful that I am now clear of the RA even though these symptoms will no longer be taken seriously. I am so confused about how I feel. Can anyone else understand where I am coming from or am I just being ungrateful?

14 Replies

Dear diamond painting, I read your post and wanted just to comment & say that you're not alone in those confusing feelings.x

Diamondpainting profile image
Diamondpainting in reply to FindMeInTheForest

Hi FindMeInTheForest. Thank you for your reply, it helps to know I am not alone! x

Cat00 profile image
Cat00

Yes sadly pain in it self doesn't worry doctors very much especially chronic pain. I've been told many times "if it was x you'd be dead by now". I console myself that the fibro pain in itself is not damaging my body, not like inflamation. Then I know I can do various things like exercise that my friend with several types of arthritis can't do. Exercise is very important to me bc it helps my mental health.

I think I would feel similar to you though in your situation, I'd worry that things might hurt more coming off the arthritis meds. Plus you get less of feeling that no one cares or believes you which makes you less pathetic!

Alltheflowers profile image
Alltheflowers in reply to Cat00

I totally agree - I hate it when people say "if it was x you'd be dead by now" We all know there are many much worse illnesses out there, but we are all given our own load to carry in this world, and saying things like that doesn't help the pain! On the other hand a little understanding can - hence why being on here helps.

Diamondpainting profile image
Diamondpainting in reply to Alltheflowers

Hi Alltheflowers (makes me think of summer). I think one of the problems I have is that when I was diagnosed with Fibro 20 years ago, my symptoms were totally dismissed by friends and family, when I was diagnosed with RA I was treated with a lot more compassion. Once they know I am in remission I will just be considered a malingerer and comments about 'oh you can get a job now' will be bandied about as according to them remission in RA will make everything miraculously go away! 🙁

Cat00 profile image
Cat00 in reply to Diamondpainting

Will you have to tell them you are in remission? I suppose it would seem very duplicitous, but it's their fault really.

Diamondpainting profile image
Diamondpainting in reply to Cat00

I suppose I only need to mention if I am asked directly, otherwise just keep quiet! Thank you Cat100. I have just looked up what the phrase 'in remission' means and it doesn't necessarily mean cured, so I suppose they can make of it what they like!

Cat00 profile image
Cat00 in reply to Diamondpainting

Presumably it's when you don't have raised inflammatory markers in your blood test results, for a period of time I guess? Either way stress is very likely a trigger so you could argue telling people might take out of remission...

Diamondpainting profile image
Diamondpainting in reply to Cat00

😜

Alltheflowers profile image
Alltheflowers in reply to Diamondpainting

Hi Diamondpainting, I think (some) people are more understanding when they know what the condition is. RA is well known, whereas with fibro, a lot of people have still never heard of it which doesn't help - but neither had I until I was diagnosed! I hope you get the support you need as I know how hard it can be - I've also had fibro for many years and spent half my life not being believed. I finally got diagnosis this year and like everyone else on here, I do the best I can, but it can be hard going.

Diamondpainting profile image
Diamondpainting in reply to Alltheflowers

Thank you!

Diamondpainting profile image
Diamondpainting in reply to Cat00

Thank you Cat00. I tried aquafit for a few months last year which helped a lot, I should try going back to that really.

RustyOBear profile image
RustyOBear

The first thing I would do is cut yourself some slack Diamondpainting. Also having fibromyalgia for over 20 years myself, I can totally empathise with the frustration of being disbelieved, patronised, taking years to get a diagnosis of FMS, having to pay privately for bouts of physio and so on. It’s totally feasible to have other conditions and it’s not ungrateful at all to have one clear up and be back to the FMS and feel upset.

Time for a bit of self-compassion, and as I can see, having just joined this community, feel supported and heard. Fibro is a complex condition with overlapping symptoms of other similar ones like CFS and ME and strikingly Long Covid now.

Research is ongoing and hopefully will provide better solutions in the future. There are gems of advice on this site and new things to try out, so have a scroll.

On the topic of gratitude, I am trying whenever I begin focussing on what I can’t do to remind myself of all the things I can, to try and counter that negative spiral that so often leads to anxiety or depression which itself can make pain feel worse.

Diamondpainting profile image
Diamondpainting in reply to RustyOBear

Thank you RustyOBear. Your reply has helped a lot :)

You may also like...