Hi, I was 'diagnosed' last year with HEDS by my physio after pain in various joints/places, and arthritis was ruled out by X-Ray. Really it was my history that suggests HEDS, and the type of pain/lack of movement/hypermobility. Other than some core exercises (which I find very difficult), and very helpful orthoses, I have not been offered any other support, and no longer see the physio. I take codeine for the pain. I feel that the EDS is getting worse, and in particular my hands are getting pretty useless - thumbs have no strength at all and hurt hugely. Back, feet, knees, hips all painful on a daily basis, and sleep can be interrupted often, which makes me fatigued, which makes the pain worse. I also have some breathing issues - gasping, but not hyperventilating - and sleep apnoea which my GP said might be menopause-related. It's all a bit complicated.
My question is should I be getting more support for the HEDS, or is there nothing to be done? Am I on a slow decline to immobility? Can my GP offer anything, should I see some other specialist?
Many thanks in advance.