I have RSD in my foot, and my doc wants to send me to PT. I have heard from quite a few of you here on these boards about PT being hit and miss. Luckily, I have a sister who is an occupational therapist; however, she hasn't worked with an RSD patient before, so she's hitting the research hard. (I love that she's willing.) While she's working a plan up, I'd LOVE to hear what exactly you guys do in your PT sessions. Is it only stretching or massage? Or is there a lot more?

I'd love to hear what exactly your PT sessions consist of so my sister and I can know if we're on the right track.

Thanks a million!

Mine really consists of desensitizing. Then he works the infected extremitys nerves. Like he will move my arm in such a way that the ulnar stretches and pulls in a good way. I assume your leg would be subject. He works the muscles I don't use or rarely use because it hurts to do so. In my case I don't use my right hand/arm so he works my rotator cuff and neck muscles ect. We do biofeedback. And tens unit is available but I don't do it. So there is a variety there. Just the fact of not mobilizing the hurt area causes more problems. Take care And best wishes

CRY MOSTLY!!!!!! first they apply heat and stim. which the stim is on really low. then they attempt to stretch me. from their they try to manipulate the feet knees hip and back with as little pain as possible. then the exercises . pelvis tilt, back bridge. leg sway, then core strengthening, and balance trials, then machine work to try to strengthen the legs suffering atrophy. if all is well after; desensitizing . the towel etc. i keep telling them that isnt doing anything but making things worse. then I crawl home .

No Ice, No Hot and Cold Water contrast therapy, No aggressive therapy, all these are known to be bad and can cause spreads or flares and lose any chance of remission.
Ideally you should have pain medication before starting any physio, as Morgan says you need desensitiaztion program, gentle massage, gentle manipulation, once the pain starts to rise it is essential to stop and wait for it to subside. You need a series of gentle exercises that you can do at home, when I was having therapy they were extremely aggressive but within an hour of getting home my hand was completely seized up again.

Figured I would throw in my 2 cents because physical therapy was HUGE for me. But I should be more specific I guess...it was huge in terms of me getting the function back. From a pain standpoint...it didn't make the pain "better" really (except for the desensitization...which was VERY painful until it did what it was supposed to) but it kept the pain from getting worse (use it or lose it) and helped me build up a tolerance for the pain.

As for what we did....here's some things. Keep in mind that when we started I could not stand or walk at ALL and I did at home physical therapy. We started with exercises sitting in the chair. I would move my foot up and down, side to side, do heal and toe raises, and chair push ups. Then there were the floor exercises too which included leg lifts, sit ups, knee walking, and hands and knees balancing (one arm/leg up at a time).

After a couple of weeks we started me standing at a corner in the kitchen countertops. We used the corner instead of at the sink at first because I needed the side to side leverage and the safety of the corner. I started with a whopping 3 seconds while holding on and that was TOUGH. But every week it was a little more and a little more. Then I started doing exercises at the sink like leg lifts, heel/toe raises, marching in place, etc. Then I graduated to standing with no hands. Again...started with only 3 seconds...but gradually worked my way up.

I also got a rollator (4-wheeled walker) about a month or so into physical therapy at the suggestion of my physical therapist. This was a big help. I really couldn't do much at first but once I was better at standing while holding onto the counter I started with laps in the dining room. At first I could only do one lap but gradually worked my way up to 30 minutes. The good thing about the rolling walker was that it allowed me to work on my gait and develop a more normal walking pattern.

My therapist also worked with my doctor to get me a portable TENS unit. This really made physical therapy possible for me. I was able to wear it while I did the therapy and put a heating patch over it after the therapist left. I stopped all of my meds a couple months into physical therapy except for the lidoderm patches (and later went on clonidine patches as well). If a TENS unit doesn't help you then you should work with your doctor to find something else that can help you with your pain enough to make sure you can DO the therapy.

Also important to note is that I didn't just do the therapy when my therapist was there...I did the exercises EVERY day TWICE a day. I would spread everything out at first, not doing more than one or two exercises at a time. I had a checklist that I made and I checked the exercises off as I did them. If I was having a bad day...instead of not doing my exercises I would do some of the earlier ones that were easier. That way I wasn't skipping any days, but could take it a little easier on those bad days.

What I liked about the at home therapy as opposed to outpatient therapy was that every exercise I did was stuff I could do at home on my own. And I felt like my success was really on ME and depended entirely on my own dedication to it.

A year and a half ago I couldn't stand or walk at all and now I am back at work and on my feet 9+ hours a day. I still use the walker but I am SO much stronger and doing so much better. The pain is still there but I can say very honestly that it is much easier to deal with (at least for me) now that I have the function back and can do other things that "distract" me from the pain.

Physical therapy is not the only treatment that I did/do but it was probably the single biggest thing for me that has given me my life back. It's not the same as it was before, but mentally I feel like a million bucks. Good luck with your therapy and if you have any questions about the specific exercises, please PM me.

It's important to have the right physical therapist. If they have real experience with RSD patients then that is the best but realistically it is most important that the therapist really wants to help you and is as dedicated to your success as you are. My therapist had no experience with RSD patients, though she did have a basic understanding of what it was. We were able to work together and achieve excellent results but it was important for us to communicate with each other about my limits, my successes, what I still needed to work on, etc. You both need to understand that physical therapy is different for RSD patients than it is for those who are recovering from other types of injuries. It's going to be slow progress...but if you keep at it and celebrate all the little successes then you can achieve big things. Good luck.

I,too have the reaction you do re therapy. Have RSD in rt. hand and within 2-3 hours after OT, fingers stiff as before. Afraid to stop but see that it isn't working.. do my own home therapy frequently.

I thought pt was a great help for my mind as well as my rsd area. It didn't help get my rsd hand back to normal but helped me get a little more movement. I was given all sorts of exercises like squeezing putty ball, picking up marbles and rolling a big rubber ball back and forth to using machines like the stationary bicylcle machine that you use your hands and feet to ride. They also had other weight machines too that I pulled down on to try to help bring strenght back into my rsd wrist and shoulder and hand. The only problem I had was that they put ice then heat on my hand and wrist after they massaged it and did tens unit at the end of each session. It started to hurt worse each time they put ice on and I finally asked them to stop and they said okay. I didn't know at the time how bad ice was for rsd and apparently neither did my pt.
Whatever you do, don't let them put ice on you.
Good luck and take care.