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Originally Posted by InHisHands
How is the therapy going now?
Your PT sounds just like mine! I hate the fluido, too... partly because of the ground up corn husks blowing around my arm, and partly because HEAT makes my pain WORSE.
My physical therapists started out slow with the desensitizing, but at this point it is mostly rough (to me) stuff- towel, sand paper, rough fabrics, etc. I HATE desensitization time... but I know I have to do it!  If I am having a rough day I am allowed more time to calm down/ rest for a few minutes, or else the pain will just get so bad I won't do anything/ can't do anything on my own. Plus I had an experience before that seems like dystonia, and my therapist doesn't want to overload my body to that point.
I have a favorite therapist too.  My therapist is very supportive/ encouraging and he listens to me. He also knows my case very well, and knows more about RSD than anyone else at the PT place. I think you need support/ encouragement/ small amount of sympathy just to help you get through it! That really helps me to keep my chin up! 
I only go to PT because my physical therapist is doing a lot of stuff that an OT would do... his wife is an OT, so he knows plenty, too.
Are you allowed to take pain medication before the PT or does your Dr want you to do it without? I take meds. before I go to PT, and it'll just take the edge off of the pain- I am still in a lot of pain, and especially when they start desensitization, but it's something.
My physical therapist is trying to get me walking correctly all of the time. I limp, because my left foot is worse than the right, and my left gets SO swollen. Lately we are working real hard on getting my legs/ feet/ toes moving. I am getting my toes to just twitch, and it's more than I had 2 weeks ago, so I'll take it.
Has your pain improved with the PT or do you think you feel worse after PT? It varies for me, though I know that the back excercises work WELL.
Does this sound hopeful?!: The other day in my lower arms/ hands I had a teeny bit of pain- no pain for 7 hours straight, and the sensitivity was gone for that long, too. Then the pain surged back full force, and my hands got HOT, RED and swelled. But that was more than I've had in a long time! I ahve also been noticing less color/ temp. changes in my hands, and they are moving a lot better! I have been working with making sculpey clay projects, I tried playing a little on the piano and I have done some other things with my hands/ arms (take pics, write, etc)... trying to get my mind off of RSD!
Hope you are well, Nikmcjo!  |
I am soooooooooo glad to hear therapy is going good for you. The therapy is still really hard, but I am improving slowly. My therapist are now not the sympathetic ones. It is more the ones that aren't my therapist. When they see me cry and sob, they come over and comfort me and give me cookies
Ha, they don't believe in medications at this place. They like refuse any kind of medications whatsoever along with nerve blocks. The only medication I take (i dunno if im allowed or not....) is tylenol with codeine at night to help me sleep some. I don't take it often, just when I am in more pain. It helps me some.
Omg, my therapist are doing the same thing with walking to me. I also limp, but my right foot is worse than my left foot. It still swells up too. I can't get my right knee to bend fast enough. My reflexes are a little messed up right now. I either walk with a straight knee (most of the time, a lil easier for me) or with a bent knee the whole time (more of a limp). My two pts decide to tape up my 4 little toes on my right foot (can't move them) to help them stay up when walking. I hate it when they do that.
With the pain, it just depends on the day and the intensity of the therapy I did. At first when I started, they would ask me on a scale of 1 to 10, what is your pain at (i hated those questions). At first they were like 9's and 9.5's. The first few days, it got worse. Then after a week or so, they got down to between 7 and 8 which was wonderful. Then slowly, they went down to 6. Lately, they have been jumping back and forth between 4 and 5. A day ago (Saturday, no therapy) it was like before all over again, but today it is back in the 4 and 5 range. It feels so wonderful. The only time that it gets back high again is when I like bump my feet or arms into something. Then they throb for the rest of the day. Besides that, the pain has reduced greatly.