New to this site, looking for help - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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New to this site, looking for help

SonnyB profile image
4 Replies

I have been diagnosed with hypermobility and have OA in almost every joint, this has been ongoing for almost 10 years. I was discharged from my Rheumatologist last year as he said there was nothing else they could do for me. In the last 18 months I have drastically gone downhill and feel so alone and isolated that I no longer know who to contact to ask for help. Please could you help, I feel as though I'm back to square one.

4 Replies
cyberbarn profile image
cyberbarn

Rheumatologists seem to diagnose but not treat. Have you got a physio you can see? They may be of more help.

Incidentally, it is very common for people with EDS to have early onset osteoarthritis, a well as other autoimmune conditions. The problem can be when we are clinically diagnosed they stop with EDS and that's our lot, but research has shown that with more tests they often find more autoimmune and rheumatological conditions on top of the EDS.

It seems once you are diagnosed with EDS they stop looking for anything else!

SonnyB profile image
SonnyB in reply to cyberbarn

Thank you so much for your reply, I think I will contact my GP again and see what they suggest. I always got tested for Rheumatoid Arthritis when I saw the Rheumatologist but it always came back clear. Having read some of the posts on here I feel exactly the same frustration as I feel if they can't give you more and more painkillers they don't want to know

cyberbarn profile image
cyberbarn in reply to SonnyB

Keep trying. I knew there was something more than EDS and osteoarthritis causing my pain, and kept pushing. Eventually they realised it was psoriatic arthritis!

SonnyB profile image
SonnyB

I have always felt there's been something else on top of the diagnosis they gave me, you know your own body. The Osteoarthritis is in every joint, both sides too. I will keep trying, even though I can't get in for a face to face appt with my GP at present?? I'm so pleased I posted, I no longer feel so alone

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