Recently Diagnosed with JHS.
Within the past 6 months, I was diagnosed with generalized joint hypermobility syndrome by my PCP. After some research of my own, I found that in other places that term isn't really used anymore and is rather called HSD? I'm still a little confused about it. Anyways, my PCP suspects I may have hEDS but she cannot make the diagnosis herself. I have been seeing OT and PT for joint problems, and was recently discharged from OT with some strengthening exercises and a recommendation to get some silversplints for most of my finger joints.
The problem is, I've been experiencing a lot of fatigue and general body pains pretty much every day, which has made it very hard to continue regularly with my PT exercises. I wanted some advice from some people who have maybe gone through it themselves on how they keep up with it, since movement is super important. I'm just so frustrated having let it get this bad and now I keep subluxating my kneecap and shoulders and further damaging the connective tissue.
I also wanted to ask, since my PCP suspects hEDS, if it's worth it to pursue a diagnosis. It's a fairly rare disorder, and I'm worried about the hoops I may have to jump through with minimal reward since I've been told that HSD/JHS is treated the same way as hEDS. Is it really worth it to get a hEDS diagnosis? For reference, I live in the United States.