Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-19-2012, 09:19 AM #1
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Quote:
Originally Posted by jennq78 View Post
I have noticed muscle spasms starting too. I really appreciate everyone's input. There is so much information being thrown my way, but hearing it from people that deal with it daily makes wayyyy more sense.



That is funny because this is exactly the way I have been thinking about it. Almost as a mental game and asking myself "how can I trick my nerves?". I'm very big into medical research, always have been, and I was reading this week on how much of a mental deal CRPS is. It made a lot of sense because it talked about how your so exhausted at the end of the day because you are trying to create the mental block and when you have trouble sleeping it is because your mind starts to relax, getting rid of the block on the pain.

All my doctors are stressing therapy a lot. I have a therapy bag at home that I have put together so when I sit down to watch TV I just grab it a do a few things. I guess I need to be more consistant. I know my family will help with that.

My 13 year old is very interested in my "zombie foot" and the different colors and shapes it changes to. Last night I was talking to my husband about dealing with this forever and my son said "you have this forever?!?!". That was a little heartbreaking to see his reaction. I guess I never explained that part to him
I don't know if you have tried this in therapy or not...but when I was doing outpatient therapy they used stim (TENS) and heat on my ankle and it helped the pain a lot. When the pain got much worse and spread a year later my at home physical therapist was able to get me a portable TENS unit and it has been a miracle for me. I'm not taking much in the way of meds...nothing for the pain besides the lidoderm patches and I also am using clonidine patches to control some of the other crazy symptoms). Anyway...the TENS by itself has helped much more than the meds ever did. Doesn't work for everyone but I thought if you could try it in therapy and if it works then you could get a portable unit that you could wear throughout the day. Once I got this it was much much easier to do the physical therapy.
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Old 03-19-2012, 10:59 AM #2
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I'm pain free in warm ocean water and nearly so in warm pool water. If you haven't tried warm water PT, I highly recommend trying it.
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jennq78 (03-19-2012)
Old 03-19-2012, 11:36 AM #3
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Jenn, since you are so newly diagnosed please consider a trial of tDCS. tDCS addresses the root cause of CRPS, is non-invasive and may be used with other treatments. Additionally, it has very few side effects and is not costly.
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jennq78 (03-19-2012)
Old 03-19-2012, 12:41 PM #4
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Quote:
Originally Posted by catra121 View Post
I don't know if you have tried this in therapy or not...but when I was doing outpatient therapy they used stim (TENS) and heat on my ankle and it helped the pain a lot. When the pain got much worse and spread a year later my at home physical therapist was able to get me a portable TENS unit and it has been a miracle for me. I'm not taking much in the way of meds...nothing for the pain besides the lidoderm patches and I also am using clonidine patches to control some of the other crazy symptoms). Anyway...the TENS by itself has helped much more than the meds ever did. Doesn't work for everyone but I thought if you could try it in therapy and if it works then you could get a portable unit that you could wear throughout the day. Once I got this it was much much easier to do the physical therapy.
I do use the TENS at every PT appointment. It seems to help, but I've only been in PT 2 weeks. I never thought about getting one to take home. I may review that with her and my dr to see what they can do for me.
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