I have had seven years of wondering what was happening to my previously fit and healthy body with next to no help from umpteen apathetic doctors, physios, chiropractors, osteopaths etc etc. So I had to do my own research and help myself little by little. Then I stumbled upon hypermobility and having previously been told that various bits of me were hypermobile by different practitioners, it all began to make sense. What clinched it was this forum and the little things people write that rang so many bells! It was such a relief, I'm sure many of you understand, so thanks. HEDS has now been confirmed by Prof G so it's official (but just a bit shocked how severe).
My biggest problem is with sitting and walking/running (and I previously ran 2 marathons!). I have already asked the south central group, but I would love to hear from anyone else who has (or even better has overcome) non-pain problems with sitting and walking, eg numb feet, pins and needles, muscle tightness, foot drop, over stepping, understepping, stumbling, slow leg, general lack of total control of legs after 'bad' sitting. This has had everyone totally puzzled.
Thanks for all the support,