Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
My physiotherapist says she knows about hypermobility, but also says things like "its unusual in females, hypermobile joints much more common in males", which seems to be wrong from what I read. I know I am more hypermobile than my hypermobile male relatives (or anyone I know) but my physio says my knees don't straighten enough.
I can believe this because I'm always scared of dislocating them and I did have two joints that didn't make the beighton scale (but the rheumatologist didn't say which two).
So she has me stretching my knees back, and I don't like how unstable they are feeling now. On the other hand they have stopped giving out beneath me.
I feel I don't want them stretching back any more and the general pain hasn't improved, but not falling is a definite plus and I don't have the sudden jolt of pain as they give way, because they aren't giving way.
My physio wants the back of my knees touching the floor when I sit with legs outstretched. But my lower leg bones bend outwards to the back and outer side (and then bend back in again lower down) so I think my feet would need to be about 8 inches off the floor in order for the backs of my knees to touch down, that would not be good, they lift a bit, but not far enough for the backs of my knees to touch the floor.
Should I keep stretching them or not? I don't know what to believe or whether it will make me better or worse.
I can believe this because I'm always scared of dislocating them and I did have two joints that didn't make the beighton scale (but the rheumatologist didn't say which two).
So she has me stretching my knees back, and I don't like how unstable they are feeling now. On the other hand they have stopped giving out beneath me.
I feel I don't want them stretching back any more and the general pain hasn't improved, but not falling is a definite plus and I don't have the sudden jolt of pain as they give way, because they aren't giving way.
My physio wants the back of my knees touching the floor when I sit with legs outstretched. But my lower leg bones bend outwards to the back and outer side (and then bend back in again lower down) so I think my feet would need to be about 8 inches off the floor in order for the backs of my knees to touch down, that would not be good, they lift a bit, but not far enough for the backs of my knees to touch the floor.
Should I keep stretching them or not? I don't know what to believe or whether it will make me better or worse.
I would be careful about stretching. It's oaky to stretch as far as is 'normal' for people, but not to the point of hyperextending. I'm trying to picture your legs from your description. I don't quite get it. One of the signs of EDS is that there is hyperextension of the knee, that the knee bends too far back and so the legs form a bow.
http://www.carletonsportsmed.com/Knee_hyperextension/knee_hyperextension.jpg
http://blog.corewalking.com/wp-content/uploads/2011/07/9-Hyper-extended-Knee.jpg
The diagram shows both normal and hyperextended knees. I would stretch to normal, but not beyond.
PT can make things better or make them worse. I think your instincts are right here.