Hypermobility not EDS

[Aspasia]

Hi, I have hypermobility syndrome (symptoms since a teenager, diagnosed in my 20s, still seeing physio, referred back to hospital this year) but not specifically EDS. I can’t see a forum just for general hypermobility… is it ok to piggy back here? A lot of the posts are, as you’d suspect, pretty relevant to my condition, but I don’t want to get in the way if it’s solely for EDS sufferers.

Any thoughts welcome. Thanks, Cheryle

[cyberbarn]

Whether you have been diagnosed as having generalised hypermobility, hypermobility spectrum disorder or hypermobile Ehlers-Danlos syndrome, they are all basically treated the same way, with treatment matching each symptom.

The whole diagnostic criteria is a bit of a mess, people that were once diagnosed with EDS hypermobile type suddenly found themselves without a diagnosis after the 2017 remake of the nosology (the branch of medical science dealing with the classification of diseases.) Researchers and clinical professionals all have their own ideas. This is actually to be expected, because diagnosis are basically a social construct. We make them up as we go along, especially if there is no known single underlying genetic cause known.

So I wouldn't worry about what 'diagnosis' you have, if you find this forum helpful for the sort of symptoms you have, then you are welcome!

[Aspasia in reply to cyberbarn]

That is really helpful - thank you for taking the time to explain. Some of the advice I’ve seen so far (on orthotics, for example) absolutely reflect my experience and I think I’ll find it incredibly useful. Thanks again.