Dear Ali and Allsion's mom,

I couldn't help but notice your post and wanted to say to hang in there and don't give up. I, too, experienced this where my left leg would either give out or move in a way that was unexpected. (My rsd began in the left). I never did get an answer as to what was causing that specifically. But it is real. It did get better over time. It puzzled my therapists and docs but they didn't doubt it. It saddens me to see that there are still medical people or physiotherapists that can doubt this.

I am aware of the reluctance by some to give wheelchair assistance too but the thing is that quality of life matters too. For me it was liberating to be able to use a motorized scooter for those times when an outing meant long distances of walking. (it meant i could actually GO out) Especially on the days when the bad leg was particularly weak. Shuffling around on one's bottom may work but it does take a lot of energy to do and doesn't work in a mall lol....half the battle with this rsd monster is how one is treated. IT's so counter-productive when a pt voices doubt. Encouragement is the way to go.

On a hopeful note, my own situation became better over time. My left leg gives out rarely now. I remember deliberately standing with mnore weight on the bad leg when I was in a situation that was "secure" for example, when standing and brushing teeeth when i knew i could hang on to the counter with one hand and if i did fall it would be onto a soft rug and not too hard lol. I had some thought i might strengthen my leg that way. Even did leg lifts while in bed to strengthen the muscles. (lifting the leg about 10 inches up in sets of 10 then up to 30 as you get better, with the ankle extended, then with the toes pointing up etc) you probably can get some exercises off the net for leg lifts....

I also had a relaxation visualization tape that I listened to every day. It helped with the tension in the body.

More importantly don't give up. Whatever mobility you do have keep working on that.

best of luck and stay strong.

carousel ( Ina)