*gentle hugs if desired, not sure about your feelings on them yet*
Oof. Not kind words, but at least not leading you on... the rheumy and genetic counselor I saw actually said the same thing - roughly "we can manage the pain somewhat, but only if it gets pretty bad; you need to exercise, exercise, exercise, otherwise you will get worse and it will suck." Never a word about how painful exercise is, of course! I'm not convinced that 30 minutes on a recumbant bike is worth it if I keep having to use a cane the next day... It does suck, though - they don't want to see me again until I am fit and exercised (apparently walking is not adequate), so it feels like they are disengaged and from the point of view of disability accommodations here in the States they always want a recent doctor's letter.
So, sympathies - and good luck with the exercise and PT! I've had tons of luck with two hypermobility-aware professional PTs - I no longer sprain my ankle every time I roll it (apparently it was dislocated mildly for eleven years, and he fixed it permanently), and my thumb braces have done a lot for my hand function. So there is some range for improvement - and neither of those PTs was prescribed, or even mentioned, by the rheumy and genetic counselor. Don't know if that's an option through NHS, but it's been the one positive development for me in terms of long-term functional improvement.
One thought of caution - I don't know if you have any lady-bit muscular issues, but if so then the ball can cause more tension and resulting problems (according to my lady-bit PT, who was very stern on the point). If not, go for it!
Oof. Not kind words, but at least not leading you on... the rheumy and genetic counselor I saw actually said the same thing - roughly "we can manage the pain somewhat, but only if it gets pretty bad; you need to exercise, exercise, exercise, otherwise you will get worse and it will suck." Never a word about how painful exercise is, of course! I'm not convinced that 30 minutes on a recumbant bike is worth it if I keep having to use a cane the next day... It does suck, though - they don't want to see me again until I am fit and exercised (apparently walking is not adequate), so it feels like they are disengaged and from the point of view of disability accommodations here in the States they always want a recent doctor's letter.
So, sympathies - and good luck with the exercise and PT! I've had tons of luck with two hypermobility-aware professional PTs - I no longer sprain my ankle every time I roll it (apparently it was dislocated mildly for eleven years, and he fixed it permanently), and my thumb braces have done a lot for my hand function. So there is some range for improvement - and neither of those PTs was prescribed, or even mentioned, by the rheumy and genetic counselor. Don't know if that's an option through NHS, but it's been the one positive development for me in terms of long-term functional improvement.
One thought of caution - I don't know if you have any lady-bit muscular issues, but if so then the ball can cause more tension and resulting problems (according to my lady-bit PT, who was very stern on the point). If not, go for it!
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