Ehlers-Danlos Support UK
1,609 members510 posts

Will they know?

I'm terrified that the rheumatologist won't even know what EDS is, let alone be able to diagnose me! And I've been waiting a month for the appointment and it's still not for another month. I'm in pain all of the time and my anxiety is worse, I feel on the verge of tears constantly and I just what a diagnosis and a plan in place to make my life a bit easier :(

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Some rheumatologists know about EDS but I don't really think anyone sems to understand it and the issues or the pain it gives. I haven't found any help from any rheumatologist or refrerrals to physios, I'm sorry to say. The most help I have had is via pain management services. The long story is, there is little to be done apart from managing the pain daily and trying to get adequate pain meds which is near on impossible. It is so tough having this condition. I wish you well, you never know, you may be lucky with your appointment! If you do get any useful advice, pass it on.

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I'm sorry but you may not get either a diagnosis or a plan. I only have an official diagnosis of 'Benign joint hypermobility syndrome', which is inadequate, but I have left it there because there seemed no obvious benefit in getting a proper diagnosis at the time.

As long as you get a proper pain control regime, which they can authorise, then it is a step forward. They should also do a referral to a physio and possibly to a pain clinic and an osteo or other specialist. They may even do a referral to a rheumatologist who specialises in hEDS.

I would bring somebody with you in case you need support to take the conversation in the direction you want. They will probably do an MRI which is always useful to check on the state of your joints.

I feel that this ailment is one of those you have to 'own' yourself - read up lots about it and become your own expert. List all your symptoms, including the occasional ones, and bring it with you to your session.

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