u/EasternPlatform9036

Help with diagnosis (?)

((THIS IS NOT A QUESTION OF DO I HAVE HEDS, I AM SEEING A DOCTOR THAT IS THE WHOLE POINT, I NEED ADVICE FOR THE ACTUAL APPOINTMENT — clarifying since this post was removed from another sub for this))

Hiya everyone,

I have an upcoming physiotherapy review with the main query being EDS (specifically hEDS) but I don't exactly know how to handle it.

Originally I stumbled upon the term and doing more research I found that a lot of symptoms lined up, so I made an appointment with my GP about hypermobility (even though it's quite mild) with a query about possible EDS and she found it sufficient enough to refer further.

I had one visit back in January with a pretty shitty doctor who brought it up even though it was completely unrelated and caught me off guard when he asked about it so I couldn't exactly describe my symptoms and he sort of brushed me off.

I am starting think it may be something else, I don't think my symptoms are very severe and I can't think of anyone I would've inherited it from, but since EDS is the main and original enquiry I thought this would be the best place to ask.

Does anyone have any advice on how to best describe symptoms and bring up my thought process/ that it may be something else?

For reference, I'm quite low on the Beighton scale (5/9 at 15), I usually get joint pain in my elbows, knees, hands, shoulders and back, and when I had pretty bad periods of shoulder pain I did find that k-tape helped, my joints are very crackly and I tend to get my knees or shoulders popping out slightly from time to time. I do get fatigue and digestive issues however I know that could be something else.

Thanks in advance for any advice<3

reddit.com
u/EasternPlatform9036 — 6 days ago