Ehlers Danlos syndrome?

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Anonymous #1
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Report Thread starter 1 month ago
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Hi everyone,

I have been hypermobile all my life but never did anything about it because it didn't really bother me. Until last year my doctor wanted to know if I had Joint Hypermobility Syndrome or Ehlers Danlos Syndrome because she thought it might be relevant to my treatment for another chronic condition, so she referred me to a rheumatologist to find out which one I have.

The rheumatologist basically said yes I definitely have one of the two but he would need to do some other test to decide which, but it wouldn't change my treatment so there's no point. He officially diagnosed the JHS because it's a bit of a "non-diagnosis" (it tells doctors I'm hypermobile but JHS doesn't cause any of the complications that EDS does, so it doesn't really affect anything), but stressed to me that he really didn't know and it could be either.

Recently I've been trying to find out which again, partly just because I'm curious and partly because I'm getting other things that might be related such as excessive joint pain. But no rheumatologist will see me now as I technically have an official diagnosis.

I just now learned that it isn't normal for all your joints to start hurting whenever you get hot, so I was wondering if anyone knows if that could be related to either JHS or EDS, and if it means I'm more likely to have one than the other?
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Pathway
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Report 1 month ago
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They're behind, JHS is no longer an accepted diagnosis - the clinical criteria for Hypermobile EDS (previously known as EDS type 3) was updated and the categories of Hypermobility Spectrum Disorders were redefined, this was in 2017. It's worth going back to see them again and ask for an updated diagnosis on the most current diagnosis criteria.

The joint pain could be related or it might be due to something else, either way it's best to get it seen to. Good luck.
Last edited by Pathway; 1 month ago
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Anonymous #1
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Report Thread starter 1 month ago
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(Original post by Pathway)
They're behind, JHS is no longer an accepted diagnosis - the clinical criteria for Hypermobile EDS (previously known as EDS type 3) was updated and the categories of Hypermobility Spectrum Disorders were redefined, this was in 2017. It's worth going back to see them again and ask for an updated diagnosis on the most current diagnosis criteria.

The joint pain could be related or it might be due to something else, either way it's best to get it seen to. Good luck.
Thank you very much, I’ll try and get another appointment to see them again. Thank you
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