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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

I have had RSD for almost 1 1/2 years. My right arm is affected, with the worst being in the wrist and most of all, the entire hand. Some fingers are worse than others. I don't know if this is "normal" for RSD or not.

True to what seems to be the usual pattern, I was mis-diagnosed by 3 different primary care-type doctors and an orthopedic specialist. Luckily though, only a few months after injury, I was properly diagnosed.

Pain blocks were done by a PM doctor, and they helped for about 8 months. After that, I descended into pain from hell once again. Medications have included Lyrica (no help), Topomax (no help), Neurontin (iffy), Ultram (no help), Hydrocodone (helps), and Fentanyl (helps).

Each doctor has told me some version of, "RSD sometimes gets better on it's own and goes away." I really hate having my hopes built up like this. When I try to pin the doctor down as to whether he has had a patient under his care that has experienced RSD "going away," it always turns out to be more like the "...friend of a friend who knows a doctor [I]in another city...[/I]"

Does anyone here know of any cases of RSD that have improved to the point of "going away?" With the exception of 2 doctors that have treated me, I have ended up finding out that none of the others have even had a patient with RSD.

The Fentanyl patches do work well enough that sometimes, in the first 2 days of a 3-day patch, I find myself hoping that maybe I am getting better, that the RSD is going away. By the 3rd day, the burning is again strong enough, the tremendous pain is again there to remind me that I still have this disease (is this a disease...or a condition?).

The hydrocodone works well for the breakthrough pain. There is also pain in the shoulder from the injury, but the shoulder can not be repaired due to the risk of making the RSD much worse (so I have been told).

Anyone have or know of any true, real successes? The pain blocks were very effective sometimes, and other shots made barely any difference at all. For now, the fentanyl patches and hydrocodone have been the most effective. The PM doc gave me info on a stimulation unit, but after playing 20 questions with the rep, the rep finally admitted that his company had no real success with positioning their unit for effective upper limb relief in RSD.

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