Dystonia Support Group

hello everyone, I had gone back to work and everything was going ok, I was getting exhausted but dealing. yesterday my hip and right leg were killing me I walked with a cain then my legs gave out, just profuse weakness and unable to stand. muscles jerking and spasming all over body, today very sore all over. This is the second time this happened witht he legs giving out and it always comes with hip pain and right before my period. anyone else ever get this. very stiff today and shoulders and neck and back hurt.

they have increased my klonopin and my lyrica, any advice from anyone

Wish I had some advice. my daughter is currently in the hospital because of severe pain and spasms. Started a week ago with the symptoms you are having- terrible pain in hip and leg, some weakness and fatigue. It got worse throughout the week then by sunday night, we had to call the ambulance. She has been in the hospital for almost a week now. meds have been changed so many times. Lyrica didn't work. Baclofen didn't either. Now she is on Klonipin, Artane, methadone and a host of others. I wish I knew the answer....I'd be there too. Hang in there though Lisa

hi lisa, does andreas legs give out, mine did after that hip and leg pain got worse, today i am walking again but pretty much staying in bed

No, her legs don't give out. Instead, they go rigid from spasms. Because of the spinal cord damage, she has one leg that is slightly weaker than the other, but that's the extent of it so far. she's only 26 right now. I worry about how it will be though in 10 years. She has a cane and this week in the hospital, the P.T. suggested she should use a walker on the bad days, but she is staunchly refusing (can't blame her) right now.