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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi Kimberly :wave:

Welcome to healthboards. I am so sorry to hear of your RSD diagnoses. You have come to the right place though. There are lots of people here anytime you have a question or just need to vent.

Your story is very similar to many of ours on this board. Unfortunately, doctors don't always pick up on RSD and just keep operating which makes matters worse. The same thing happened to me with my ankle.

The scary thing about RSD is it basically has a mind of it's own. It's difficult for a doctor to provide a prognosis because unfortunately they don't know. Current RSD treatment mainly focuses on managing the symptoms, not on how to cure it. There is no magic bullet or cure right now for RSD.

First off you need to be seeing a doctor who specializes in treating pain, like an anesthesiologist if you aren't already. Treatment varies from doctor to doctor. Many times sympathetic blocks are tried. In your case it would be a lumbar sympathetic block since your lower limb is affected. Anti-convulsant medication is usually prescribed to help with the burning. Examples are Neurontin and Topomax. Anti- depressants, anti-inflamatories, and opiods are often prescribed also. Topical treatments like menthol arthritis patches (over the counter), Lidoderm patches, or Ketamine cream are very helpful for some people. Physical therapy is an important part of treatment for RSD. If your doctor does not have you in therapy, request it. It is imperative that you keep your affected limb as active as possible. Because of the stage you are in and other health problems, your doctor may recommend more interventional therapies like a spinal cord stimulator or intrathecal pump. This all depends on what you have tried before and what has or has not worked for you.

One important thing to remember is NEVER USE ICE. This can cause the RSD to flare or even spread. I have found heat to be beneficial to me. I use an electric blanket almost all day.

There is an excellent book that you should read. It's titled "Living with RSD" by Linda Lang and Peter Moskovitz, MD. It is available on Amazon for under $12. It goes through the basics of the disorder, treatment, how to cope, and much more.

Finally, learn as much as you can about RSD. Read through some of the previous posts here, Read the first 3 sticky posts at the top of this page, and do lots of research online. Knowledge is power. Being informed will help you make the right decisions for your treatment.

I hope some of this helps. There is so much I didn't talk about but by doing a little research online you will find out anything you want to know about RSD.

Gina :)

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