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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Here's my answer to what I would have done if I had known in the beginning what I know now:
1. I would never have allowed the doctors to immobilize my ankle or treat with ice.
2. I would never have allowed doctors to bully me into treatments that I did not believe would help me (payed the price for this when said treatment caused my RSD to spread).
3. I would have dumped doctors at the very first sign of their lack of knowledge about RSD.
4. I would have started treating with tDCS immediately. This has been a miracle for me after experiencing spread and I wish I had known about it much sooner. It is effective, non invasive (no risk of spread), has had no side effects for me, only cost $300, can do the treatments at home myself, and aims at the root cause of the condition vs just covering up symptoms.
I want to make clear that these are the things that I personally would have done differently knowing what I know now. Everyone has to do what they feel is best with regards to treatments and such. Educate yourself about the many different treatment options and be an active part of any treatment plans. If the doctors you see don't respect that then they don't respect you. Keep your focus on getting better and stay positive (as much as you can...we all have bad days). And don't ever, ever, ever allow yourself to be pushed into doing a treatment that you don't want to do. It's YOUR body and you ALWAYS have a choice.