Ehlers-Danlos Support UK

Could this be Ehlers-Danlos Syndrome?

Hi, I've just joined today and this is my story.

Well, I've always been very bendy. Not to the point of doing the splits - I've never, EVER managed to do that. But my problems started in 2002 when I injured my hip. From that moment on, it would click and snap whenever I moved.

I saw an osteopath who told me I had generalised joint laxity. He sent a letter to my GP and it stated that I had hypermobility of the spine and excessive torsion of my pelvis/iliopsoas.

I had 2 corticosteroid injections in my hip and I was diagnosed in 2010 with Snapping Hip Syndrome. The injections helped but the pain and clicking was still there, so I had an iliopsoas tendon release done in 2011, which had limited success. The pain stopped but the clicking is still there, even now.

The consultant who did the operation said they had to cut a lot of the tendon away as the constant snapping and clicking had frayed it, so I was lucky I had the operation when I did, else it would have progressed to a cartilage tear.

What has escalated things recently is that my Endocrinologist who I have been seeing for my hypothyroidism does not refer people to rheumatologists on a consultant-to-consultant basis and she has said I have no connective tissue disorder. I think she is wrong.

The reasons I think she is wrong are because:

* I have unexplained cuts and tears in my skin (minute ones that I don't realise are there until something like salt irritates them)

* Unexplained bruises appearing under my skin. Not major ones.

* Joint laxity - I have photos if anyone wishes to see just how bendy I am. I can also go into the crab position - at my age I didn't think that was possible. I also have pictures of me in other strange positions and I can post these if anyone would like me to.

* I also suffer from Raynaud's but the endocrinologist thinks I don't have this despite me getting white, numb, stiff toes when outside only for them to remain purple for quite a few days.

* I have no inflammatory markers BUT I do have a positive ANA titre.

Thanks for any help. I feel a bit lost at the moment and don't know what else to do.

Jo xxx

1 Reply

Hi, did you ever get a diagnosis? I've only just joined today, and am reading through posts. I don't have a diagnosis yet, my rheumatologist who I saw on Monday for the first time had never heard of EDS so had no idea what to tell me. My symptoms are a lot like yours, perhaps a bit more, and I wonder if you ever did find out if it was EDS or if you were given other answers? I find it surprising that with over 200 members there seems to be very little chat going on here, and most posts have no replies. Quite sad for a place that's supposed to be a support group. :( I sincerely hope you found support elsewhere.

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