Need advice for hypermobility pain and lack of testing options

I have hypermobility which is suspected to be caused by something else, possibly hEDS, but I've just been told by a doctor that the area in I'm doesn't receive funding for hypermobilty secondary care, so they can't test for EDS and the only option if you have the symptoms is more physio. I'm in so much pain and physio doesn't help, what do I do now?

Your answer

KaelVen

1mo ago

Same here! I have been told my doctor doesn't diagnose hEDS even though I meet the criteria for it...

cuddly_echidna

1mo ago

Hi. Sorry you're in so much pain. I can relate. What helped me was getting treatment from a sports physician. I'm in Australia, so, different system. But, the sports physician treated me for the problems even before I had a diagnosis. He could still do scans that picked up problems in my knees like Patella Femoral Syndrome. And he could treat with PRP and Prolotherapy injections. I got injections in my knees, SIJ (lower back) and lumbar spine. PRP is platelet rich plasma. Prolotherapy is more affordable.

crustycrustacean

7mo ago

I'm in a similar situation. Here there is only one geneticist in the state that tests for heds. I've been told I'm on the waiting list but it's years out. Are there any hypermobility researchers in your area?

hello.its.me

7mo ago

I'm in the UK so it sa bit different. NHS cornwall just don't get funding for it and I'm a student so there no way I can go private

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