#the rheumatologist I saw said I likely would meet all of the criteria for hEDS when I spoke to him via video appt.

[lichennthropy]

pain flare up. can’t bend knees. knee braces get sweaty cause it’s hot out. lost my cane. have to walk to work and back home. Suffering rn

[chronicillnessproblems]

is it possible to have EDS without being double-jointed? i saw a doctor who said i was just really stretchy but only afterwards did i find out about EDS. (i dont know if thats a type of joint hypermobility or not, and if it is, its very mild. but i still get serious joint pain and my joints pop out a lot)

It depends what you mean by double-jointed, which is kind of a misnomer and not very medical of a term as far as diagnostic criteria goes. All types of EDS involve hypermobility (though some more than others) and doctors usually go by the Brighton and Beighton scales to diagnose EDS. If you don’t fit the Beighton score of 4 or more for hypermobility it means that you are less likely to have Hypermobile type EDS, but if you’re hypermobile in other places and/or have Brighton criteria, it would be worth looking into the other types of EDS and other connective tissue disorders. The Villefranche criteria (X, X) might be more helpful for non-HEDS types of EDS, though it’s worth noting that it was developed in 1998 and there was a meeting in 2016 where doctors tried to update the EDS info, so the Villefranche criteria might not be as relevant soon. It’s a place to start, though. Also, there are other connective tissue disorders similar to EDS that might fit better, so looking into other connective tissue disorders that match your symptom might help, but the joints popping out would point towards EDS, which as far as I know is the only condition commonly associated with frequent dislocations/subluxations (joints popping out.)Genetics are hard to diagnose though and sometimes people fit the HEDS diagnosis best without having all the features (at least, that’s the impression I get when I talk to geneticists) so it definitely is possible to have HEDS be the best diagnosis even with a lower Beighton score. If you live in an area with an EDS knowledgeable geneticist I’d definitely recommend trying to see one, otherwise, sometimes you can get lucky with other types of doctors like rheumatologists who are educated enough in connective tissue disorders to help you find the right diagnosis.