Start PT Monday. It's been about 3 years since I last had PT but it was post-broken leg and not for RSD. This time the order is from my PD for RSD.
I'm wondering if anyone can share what their PT for RSD is like. I'm concerned because of all the damage in my knee and recently the knee pain is worse than the RSD. I see the Ortho the following week, but I'm anxious about the pain increasing with the therapy. The last round of PT I remember was difficult because it ascerbated the RSD. Words of wisdom welcome. Lynnie ONE MOMENT CAN CHANGE EVERYTHING!
P.S. Slept the last 6 nights and other than the leg pain, I feel good. Whoopee!

I am glad you have been in a better pain spot. I was talking to my new pain doc today about PT. I have done it in the past and this was not a good thing for me but I know it is very key to getting to a better state with the RSD. The pain doc today said if I do to make sure I tell the PT person and somewhat direct them in what I feel. I know some are not as open to this but hopefully yours deals with RSD and may be. I know one has to push through some pain but there is also limits. I know that if I go back some things I think could help and heard from others is pool therapy, proper balance and relying on full body not compensating for rsd area,desensitize. I wish I had better answers and driections. I have heard some here get PT people who get frustrated easily and I felt that way with one I went to and got shouted at. Now when I look back I think of the progress I had made even though I was in a bad spot. Listen one can't go from A to Z over night. So no matter what I think it is amazing you are doing this and think of progress and hopefully you will see the benefits if this is the right time for you to be in PT.

I am in PT now. I went yesterday. Mine is for everything though. The TOS, Fibro, and other issues.

I did spend 3 years in PT though. First for my back, then for the TOS, RSD, and Fibro. I had 7 different Physical Therpist. My first 2 knew enough to diagnose the TOS and knew how to deal with it. They moved on and my next 3 weren't any good at all. Two were working together and said that I might get worse before I got better with them. My Dr. said no to them. He said that I might get worse and then not get better. Then I found Paul and Debbie. They were able to diagnose the RSD in my back too. My 4 good ones never made me get on any exercise machines.

They do stretching of the tendons and muscles, they do manipulation of the arms, legs or my head themselves, triggerpoint release, and stretching of the muscles and joints, and massages. He's got me doing some exercises at home but they are just minor things for my back and neck. He says that if I leave there worse off then he's not doing the job.

You do want to make sure that they know about RSD and how to deal with it.

Another thing is, if you have more then one therapist in the area, if you don't like the one go to another. We have another place here that is part of the hospital and I won't go to them again. Like Drs., you keep looking until you find the right one.

Hope you start feeling better soon.
Ada

Hi Lynnie,

I'm so glad to hear that you are feeling good and really hope that the PT goes well for you and that you see some improvements!!!

I have been in PT since about a week after my injury (ankle sprain) that lead to RSD.

For the first 5 months, the PTs didn't know anything about RSD and didn't know that I had it even though I had all of the obvious symptoms. It was only when I was diagnosed that I went to see some PTs that had treated RSD before and knew what sort of things to do.

I have also been onto two intense Physical Therapy Programs at Great Ormond Street Childrens Hospital in London. The first one lasted 3 weeks and they got me walking short distances again (I was wheelchair bound before that) however the pain, Dystonia and other symptoms didn't go away so the PT's told me that I had to go back for another 2 weeks a month later.

The second PT Program didn't help at all as the PT's there didn't really know what to do about the Dystonia in my RSD leg. The leading PT wasn't there so it was left to other PTs who didn't have enough experience to deal with RSD and the additional complication of the Dystonia.

The PTs want me to go back to London again soon for more intense PT but i'm not sure if I want to go. They want to cast my leg and it is something that I really dont want to do as I had my leg casted before and it made me worse and i've read so many horror stories about it.

I go to PT at my local childrens hospital once a week now and have to do exercises at home on a daily basis. The PT's mainly focus on weight bearing exercises and try to get my leg into a normal position (it is currently severely rotated to the side). I have also had a splint made for my leg so they try and get my foot into a normal position using that.

I think what you focus on in PT is different for everyone depending on how severe your RSD is, where you have it etc. Different PTs seem to have different ideas as to what might help and what wont (in my experience anyway). I'm not going to lie to you and say that the PT is easy, it isn't at all but I know that I have to keep moving as much as possible and hopefully it will help me in the long run.

I really hope that the PT will help you and please keep us posted!! Make sure that the PT's know about RSD also and don't let them push you too much - you need to be pushed but at the same time, don't want to make things any worse!!

Thinking about you!

I am glad you are feeling well now. I believe we all respond differently to any type of therapy. For me PT was hell. I had to quit after 3 weeks. I have been told that aqua therapy is a very good option. I am gong to sign up at a club near us. We have a pool which will be open soon but my doctor said they can teach me the exercises that I can do at home. Best of luck and hope it helps! Linda

Hi Lynnie,

I've had close to 150 units of PT for my shoulder injury in the last 2 and a half years. What's most important from my perspective is that the PT believes in your pain. I spent an awful lot of time with therpists yanking my arm in an attempt to achieve good ROM, while they ignored my tears of pain. It really sucked. I didn't know any better, so I stayed and let them hurt me. Obviously, I will NEVER do that again.

You also want to avoid therapists that suggest icing your limb at the end of the session. Ice is not good for RSD; furthermore, it's a dead giveaway that your therapist has no clue.

My current PT has some experienced with RSD and has likely done some research on the subject- (he's the only good thing I got out of my first RI PM doc). He doesn't touch my affected limb, but has given me stretches to do which increase my ROM, and to a lessor degree, my strength. I do not work with any weights or stretchy thingies. If I do anything too stenuous my pain levels go through the roof, but not until the next day.

good luck, Sandy

Actually is was the Physical Therapist 4 years ago who first suggested I had RSD so they were more educated on the condition than the orthopedics I consulted with. Had eval Monday and it was quite thorough; today was first session. Both knee and RSD have increase in pain, but my mobility was declining so maybe this will help get me back. I'm trying to get aqua therapy approved as recommended because it would take pressure off the knee. We'll see. If not my pool is open for the summer if the weather would just cooperate and stay warm to heat up the water. I'll just take an extra pain pill tonight to sleep through the night hopefully. I can tell it's going to be a big challenge. What do they say...no pain, no gain. I'm just tired physically and tired of pain. So thanks for responding, it helps to not feel so isolated. Lynnie "ONE MOMENT CAN CHANGE EVERYTHING!"