[ali12]

Hi everyone,

I just wanted to keep you all updated and let you know that I am half way through my second intense physical therapy program. The program lasts 2 weeks this time (it was 3 weeks last time).

Things aren't going as well as we expected this time, I still have a LOT of pain and my foot wont go into a normal position, in fact the PT's said that my foot is more rotated than it was the first time I was on the program. I have Dystonia as well as RSD which means that my left leg (the one with RSD) is locked and rotated out to the side in eversion. My ankle has been like this since I sprained my ankle 18 months ago. I saw the leading Physical Therapist today and she also admitted that things aren't going as well as she expected. She said that she wanted to do more one-to-one work with me but she can't as she is getting ready to leave to a conference on Friday about chronic pain conditions. She is going to discuss my case in front of 12,000 doctors and health professionals in San Fransisco (that is pretty scary!!!). The PT's have also said that I will need to go back into hospital in January for a further 2-3 weeks intense Physical Therapy.

I was just wondering whether anyone else with RSD AND Dystonia have been on an intense Physical Therapy program like this and also how did they respond? I was told by my Doctors and PT's that there is no guarentee that the PT will work as RSD, Dystonia and Myoclonus are extremely difficult to treat.

Any help/advice is much appreaciated!!

Thanks,
Alison

[LMJunior]

I'm sorry your PT isn't going as good as the last time. Hopefully when you go in the hospital for three weeks of PT that will help you a lot. I have RSD and Migraines,but I don't have the dystonia. I will say prayers that you will get relief soon. Take Care Good Luck with the Physical Therapy program.

Laraine

[Twinkletoes]

Awwww, so sorry you are having to go through all this. You are too nice a person for such bad stuff.

Wish I had some answers for you. Glad the docs are putting their heads together in your behalf. I hope they come up with a good solution for what ails Ali.

[AnnieLee]

Sounds like a really icky place to be with the PT being painful (when it is not???? Seriously, someone needs to invent a PT regimen that you do painlessly, from your couch, while watching Telly and eating ice-cream...) and not too effective yet. Hopefully it will work, and if need be, the hospital stay with the intensive work would. I've never been through such an intensive thing for RSD, as the only intensive PT I'd had was when I was recovering from my spine surgery and needed to learn to sit, stand, walk, get in and out of the tub, put clothes on, get clothes off...go up and down stairs and other basics. But it wasn't for the RSD proper. In fact, we didn't know at the time that I even had RSD. I do hear, however, that this kind of therapy can be helpful, and I'll be sending you good vibes and extra-special good wishes. Hang in there!
Annie