Quote:
Originally Posted by SleeplessInDC
Hi everyone --
I was recently diagnosed with early CRPS. After an ankle surgery 1 month ago, I began having burning pain at the incision site, followed by spreading, agonizing pain from toes to mid-shin. This was accompanied by what I now know are other hallmark symptoms of early CRPS -- increased swelling and sweating, color and temperature changes, decreased sensation, etc.
My orthopedist quickly recognized the symptoms, and started me on Gabapentin. I'm now up to 600x3/day. My pain became uncontrollable using Vicodin/Percocet/Oxycontin, so I'm now on a 25mcg Duragesic patch. The combination of the two meds has decreased the non-pain symptoms of CRPS noticeably (my sensation is much better) and seems to have improved, or at least masked, the pain symptoms partially -- I'd estimate a 30% reduction in pain on average, though it varies a lot from day to day. I find the side effects disruptive -- among others, I have significant memory loss and trouble thinking, and large and constant (but not painful) muscle jerks -- but I'm willing to be patient with them while I get used to the medications and focus on symptom management.
I am now weight-bearing on the affected leg, but will not be able to get my cast off and start PT for another week and a half.
My primary question (I'm sure I will have many more as I move forward, but I want to get a handle on what's already been answered 100x on the board) is this: Knowing everything you know now, what would you do if you had been diagnosed very early in the disease progression? I am in my mid-20s and EXTREMELY motivated to do anything necessary to achieve remission or at least a high degree of improvement -- no matter how painful, inconvenient, or expensive.
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I am also relatively new to the disease as well- diagnosed last Nov. but believe I may have had the disease a bit earlier than when it was diagnosed. You are lucky your doctor picked up on it so quickly. I've read that it takes, on average, seeing 7 different docs before the disease is recognized.
I agree with everything else posted above but would like to add one thing- try to avoid stress. I know this is very hard to do given the diagnosis. When I hurt my foot I was under a lot of stress because of a loved one's situation. I did not recognize what my worry for him was doing for my own health. Stress is known to contribute to this disease so whatever you can do to release stressors from your life (easier said than done) will help.