Cactus foot

I meant to ask what you did in your session and why it was so awful? Was it "only" pain or was there something else that made the PT experience so bad the other day when you went? I'm sure you realise when I say only pain, I am being sarcastic!! I know you said you were really worried about it after last time - is some of it the fear of the whole experience? I don't want to sound trite but I wonder if some basic relaxation techniques or even hypnotherapy could help with giving you tools to try and manage some of the anxiety? If its the pain that results from doing the physio that's harder to suggest anything for if you are already taking meds for pain.

If you can also keep up whatever homework you have been given it will make a difference. Loretta was bang-on again when she said that its the stuff she did at home was key to her outcome. Physios are always frustrated because folk think that PT is something that they have done to them rather than something they have to do themselves. I used to do my exercises in the bath where the water was warm. That said, once I eventually lost my ability to make sufficient involuntary movements to do my PT, the only option I had was passive manipulation by my physio. He was great and was happy to do that for me even though he didn't think from a physiotherapy point of view he was doing anything useful for me!! It kept things mobile and that was a gain for me which I think has had a long term benefit.

Maybe others can help with some physio "survival ideas" if you feel up to sharing what you are doing and which aspects you are finding awful.

We started desensitization.. a word I can't say out loud without a few attempts. It went on for about 20 minutes and wasnt SO bad during it but these last few days since the searing agony is flipping all over usually quiet areas and intermingling with the dead numbness in ways that make me sick.

It was kind of a double whammy because I saw 2 PT's one after the other, the first for balance and to try to stretch the leg and the second for desensitizing some large nerves that have long been damage and are irritable from living in scars. I'll find the strength to push through, my goal is to run again eventually.

My main problem is that I dealt with it by ignoring it forever and now that I'm trying to take stock and deal with it I can't wrap my mind around the challenge. Although I've found large degrees of success in the past by ignoring it, much to my surprise it still effected most paths I've chosen.
I'm worried that even with my full attention and the best efforts of dr's and pt's and an unending pool of strength to push me forward I can't save the ankle and the foot / knee are going with it. Just because I foresee failure, however, will never prevent me from giving it a go. The PT that worked on desensitizing calls crps "crips" and said that's what it is in her opinion along with reynauds. I find it funny every time she says crips even though it's a nightmare.

[QUOTE=cactusfoot;953533]It was kind of a double whammy because I saw 2 PT's one after the other, the first for balance and to try to stretch the leg and the second for desensitizing some large nerves that have long been damage and are irritable from living in scars. I'll find the strength to push through, my goal is to run again eventually.

My main problem is that I dealt with it by ignoring it forever and now that I'm trying to take stock and deal with it I can't wrap my mind around the challenge. Although I've found large degrees of success in the past by ignoring it, much to my surprise it still effected most paths I've chosen.
I'm worried that even with my full attention and the best efforts of dr's and pt's and an unending pool of strength to push me forward I can't save the ankle and the foot / knee are going with it. Just because I foresee failure, however, will never prevent me from giving it a go. The PT that worked on desensitizing calls crps "crips" and said that's what it is in her opinion along with reynauds.


Cactusfoot, It's good to hear your 'resolve' at giving PT a 'go'.!!! Like Neurochic said-it's the daily 'at home' for me that greatly contributed to my range of motion recovery and desensitization. When the PT people had me take plastic bowls with different textures in them, like cotton balls, sugar, rice, beans etc-that eventually lead to being able to use my hand again. Like I said before, my hand was frozen like a board, not able to cut my food, no use whatsoever of my left hand to now typing this to you. This was in 2002 when I was diagnosed.
Back in 96 when RSD hit me following surgery with frozen shoulder, and stabbing pains, I was put in PT with very little range of motion. Yes, it took 100 PT treatments, to regain motion. Because it was sooo painful-the PT, I decided to do massage therapy for an hour immediately prior to the PT. I felt that the massage would loosen me up so I could get further in the PT. My insurance was paying for PT but not massage. The massage was $60 an hour back then, but felt it was helping. After about 50 PT treatments, my rehab. dr. wanted me to see orthopedic surgeon who wanted to operate on the adhesive capulitis and 'break it loose' I said no thank you, thank goodness. I called my insurance company and asked them to pay for my massage therapy. They said no, my insurance didn't cover it. They were only paying for the PT. I told them, the ortho wanted to operate on my shoulder and I would still have to have more PT. I told them I had a choice between operation and more PT OR would they like to PAY for massage therapy and PT. The agent said 'just a minute' came back and said we would be Happy to pay for massage therapy also. just send them the bills.
Neurochic said she used warm bath water for at home therapy. I did the same thing, when my toes curled off the floor, I every single day, used the warm water to exercise the toes till they eventually touched the floor again. I know this may not work for every single person, but how do we know unless we try?
Please, just stay with the desensitization and do 'the work' at pt and at home.
Thanks for keeping us posted on how you are doing. loretta

WELL there it is.. from a pain specialist " officially type 2 crps, very likely type 1 as well,." the relief I expected to find after an official diagnosis is taking it's sweet time in arriving.