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 08-31-2011, 12:48 PM #7
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catra121 catra121 is offline
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catra121 catra121 is offline
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Join Date: Jan 2010
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I know how frustrating it can be with the pain docs sometimes. If you haven't been through physical therapy and all they have really done is blocks then I think that there are other options that the docs should be considering. I would push for the PT and tell them that you need the script for insurance. It will also tell the therapist what sort of therapy that you need.

The first time I did therapy they had me start in the pool, which is easier because you are not full weight bearing for the exercises. Gradually we moved out of the pool and I was able to get a lot of functionality back. The only problem with the pool was that the cool temperature (sometimes just from getting out of the pool) hurt quite a bit sometimes. But it did improve my functionality.

After my last flare up and the problems that I have encounter since then over the past few months, I have been working with a home care physical therapist. We started with all seated exercises since I wasn't able to stand at all when we started the therapy. Then we moved up to standing at the counter with holding, and have just started doing stuff with no hands and I am walking with a walker (not far and very slowly but compared to where I was at 2 months ago it is an amazing amount of freedom).

I also discovered the benefits of a TENS machine during physical therapy. It has been more effective than any medication in helping with my pain. My current therapist was able to get me a personal one that I can wear all day. This has been amazing and I don't think that I would be walking without it.

Just seems like there are other options out there to treat the RSD that maybe haven't been tried yet. Physical therapy is a long process and it can be really frustrating at first because it doesn't seem like a lot of progress...but it can really help over time if you do all the things they tell you.

As far as the cortisone shots...I don't know what to tell you. I had really bad reactions and spread after the lumbar sympathetic block I had in January so I would be hesitant personally to do anything that meant shots of any kind. But I know that mine is a rare case (I think) and it really comes down to what you feel is the best decision in your case. Just make sure you are able to weigh the benefits and risks before hand.

If either of your PMs has a problem discussing all of these things with you, your concerns and ideas about treatment, then they are not the doctor for you. It can be hard to find a doc that is a good fit, but before doing any procedure that you are nervous about you should feel confident that you and your doctor have made the best choice for YOU. Some docs are quick to jump into procedures and I know that my experience with the doc that did the procedure in January that went badly was that he pushed the blocks on me, didn't really discuss things with me, and then when it didn't work out I was just pushed off on someone else. In hind sight I wish that I had felt more comfortable with the doctor before just agreeing on a procedure, if I had made that a priority instead of being blinded by the pain, I think things would have turned out differently. Instead I felt like I got poor care and have just been trying to deal with the fall out...and on my own instead of having the support of a physician to help me. I've found a good primary care doc since then who has helped me with the physical therapy, but the few PM docs I have seen just have not given me good vibes. There are no guarantees...things can always go wrong...but I think it's important to go with a doctor who will be there for you if things don't go the way you want.
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