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Old 06-10-2012, 06:40 AM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
15 yr Member
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This seems to happen all too often. I've seen a number of doctors who claim to know about RSD or that it is one of their "specialties" but they really dont know a gosh darn thing. Once you meet a few I think it becomes easier to see the red flags. You can ask a handful of questions and based on those answers you can usually get the feel for whether they really know what they are talking about.

I completely understand not wanting to live your life on so many medications...I feel the same way. Everyone has to go with the treatment option they feel is best for them and for some people medications are what they are most comfortable with. I am not one of those people. I currently only use clonidine patches to help control the symptoms of dizziness and blurry vision so that I can drive and lidoderm patches for the pain. That's it for meds. I also use the TENS, ultrasound, hot baths, heating patches, physical therapy, and tDCS for the pain.

I would suggest looking into tDCS treatments because it really is one of the only treatment options out there that attempts to treat the root cause of the condition rather than covering up symptoms. It doesn't work for everyone but I have seen some amazing success with it. I got a lot of the function back with physical therapy but tDCS has given me a life where my pain level is not a 9-10 all the time. Dr. Fugedy is the best for this treatment, though I have done all of the work on my own without any consultations with him. And the cost was only $300 for all the equipment for me.

Other things that you could try that I didn't see mentioned in your post: blocks, ketamine, physical therapy, aqua therapy, mirror therapy, and calmare therapy. I don't know a lot about all of these things but they may be worth looking into for you...there are definitely lots of options out there to try. Ketamine has seen some amazing success at putting people into remission but it's expensive and does carry some serious risks. Physical therapy was HUGE for me...but you really do need something that can help control your pain enough so that you can DO the therapy and really commit to it. Aqua therapy is good for a lot of people and can be a great starting point if regular physical therapy is still out of your reach. I don't know much about calmare or mirror therapy...but some have had great success with each. Blocks...they are a pretty standard early treatment but I had a very bad experience when the last one I had caused the RSD to spread to my entire upper body. This is very rare but it happened to me so it serves as a reminder that ANY sort of trauma or invasive procedure CAN cause spread. Doesn't mean that it WILL but decisions about treatment options should consider all the risks and weigh against the possible benefits. No treatment decision should be made lightly or in desperation.

Take care and good luck. I'm so sorry you had to deal with a doctor who clearly wasn't up to the challenge of actually helping a patient with RSD.
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