Advice for first rheumatology appoint... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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Advice for first rheumatology appointment about Hypermobility?

squashyhol
squashyhol

I’m a 21 year old girl & have had chronic joint pain since I was 13 - started in my knees and now I’m at the point at which I cannot write. I have so many problems including fatigue, IBS, eczema, dizziness when standing up, allergies (too many to count!!) and the over-the-counter medicines and prescription medications have offered little relief. I’ve been dismissed by so many doctors over the years me been told it’s all in my head and even sent to therapy but last March my physio told me that I am hyper mobile and to ask my GP about Hypermobility syndrome. I scored 7/9 on the Beighton scale (although I was told my knees do actually sway back and it was a tough decision on whether to mark them positive or not) and after my recent appointment with the GP, they have referred me to rheumatology - my appointment is in a month.

I am new to this website and I’m just writing this post in hope of getting some tips and advice for me upcoming appointment, any ideas of what to expect, or any questions I should ask! Thanks in advance x

4 Replies
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Good luck with your appointment, I just wanted to say don't hope for too much if you are just seeing a normal rheumatologist. I wish you had been referred to a geneticist as rheumatologists vary on their opinions on EDS. My first rheumatologist didn't believe it existed even though my mother died from EDS related complications at 54! If you encounter resistance from the rheumatologist ask your GP to refer you to a geneticist.It might be an idea to ask for a referral to genetics now? To be honest Rheumatology have done little to help me, they prescribed some horrific drugs with terrible side effects which had no effect. Probably because I don't have fibromyalgia! Watch your joints, don't do party tricks for anyone, doctors included! Try and keep as physically fit as you can. Keeping the joints strong now will help down the line, good luck.

Best wishes

Alex

Thank you so much for your reply! I have seen a rheumatologist a couple of years back when they suspected I had rheumatoid arthritis and was very disappointed with my appointment so I’m not expected great things this time! It’s just nice to feel like I’m finally getting somewhere but I’m pretty sure I’ll be let down again! I will try to speak to my GP about a referral to a geneticist as I’ve seen a couple of other posts on here that mention that being the best way to get a diagnosis/any help. Thanks again! ☺️☺️

Hi Alex sorry for jumping in on this post but I wondered what tests to ask for as just had letter from Rheumy saying no genetic tests available.... Diagnosed me with fibromyalgia instead but don't agree, says Bieghton not high enough so any help would be appreciated. Squashyhol all the best with your Appointment and your health

Hi, there are no genetic tests(as far as I am aware,) unless you are suspected of veds, but a decent geneticist can make a clinical diagnosis. With hindsight, as I knew I had EDS( it's in the family) I wish I had saved myself many years of cr@p and got a prvate diagnosis from one of the well known EDS doctors 15 years ago! Good luck!

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