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 12-26-2011, 07:01 PM #6
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catra121 catra121 is offline
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
Posts: 1,785
15 yr Member
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I'm so sorry to hear what your mom and you are going through right now.

You've been given some good information about neurologists and PM docs. The key is to find a main doctor to work with who really understands RSD and who your mom feels she can trust. But you definitely want to make sure that this is treated aggressively from the start.

As far as medications...there are tons of them out there and everyone has different reactions to each. Neurontin did nothing for me...Lyrica had a much more noticeable impact on my pain vs any other medication I have been put on. It's also important to understand that often it's finding the right combination of meds that has the greatest effect. Obviously if she continues to have bad side effects from a med then she should probably try to find a different one. Then if that helps a little with minimal or no side effects you can work with the doctor to adjust dosage or add another med in there. Just don't let them put her on a whole bunch of meds at once because you will never know which (if any) are helping and if there are any side effects which is causing them. Good doctors should already know this...but it happens all the time where the doctors will put you on 3-4 meds all at once and it can cause quite a mess (talking from experience on this one).

And just a few things that your mom should be aware of while she is waiting to see a doctor or get treatment. First...NO ICE! Usually we think that when there is swelling then we should use ice...but this is not the case with RSD. Even in non RSD areas...no ice. And second...she has to keep moving. Immobilization will only make the RSD worse. Even if she can only do a very little bit, she has to try to do it. On bad days when my ankle hurts so bad that I can't walk I still at least try to move it back and forth or do some physical therapy exercises while seated. Also, know that physical therapy is a critical piece of the puzzle in treatment of RSD, so any treatment plan the treating doctor has for you mom should include physical therapy.

I am so sorry to hear that your mother is suffering and I hope she finds a good doctor soon who can get her some relief. Best of luck to both of you. This is a great place to ask questions and just for support from people who understand what life with RSD is like. Even when treating with a great doctor, we all need that emotional support that you can only get from people who really know what it is to live with RSD each and every day.
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