Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-09-2016, 09:38 PM #4
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Thank you both.

Spike - The only prescription that I am taking at the moment that I know has given me relief is the amitriptyline. Soon after I started taking that, the burning became tolerable everywhere except my ankle. I did notice some relief when I was on fentanyl and oxycodone combined, but it was not enough to continue using it. Soon after I discontinued using it, I did have an increase in pain. A one or two point decrease in pain was not enough to keep using them in my opinion, which is why we decided to start tapering off.

Catra - I can understand your concern of not letting the doctors persuade me to go with any particular treatment. I have been to 4 pain management doctors, one psychologist, my orthopedic surgeon and of course my PCP. All except one of them have suggested that the SCS was probably the best way for me to find relief. Of them, only 2 of those doctors would have had some involvement in the procedure of implanting the leads, the first PM I saw and the PM I am seeing now. I don't think that this PM was excited about the SCS, I am fairly certain that he was more excited about my willingness to a medication that may help with some of my blood flow issues. I have given thought to the SCS for quite a while now. I did not want to go with it the first time it was offered, but the more I have been reading on it, and the more I am learning about it, the more I have been leaning toward making the decision to go ahead with it.

I don't really consider me having full body, but I have had the CRPS spread from my R. ankle to both legs, my left arm, my shoulders, neck, and upper back. Everything except my R. ankle is fairly mild and under control. I do understand the risk of aggravating the CRPS, causing it to go out of control, spread to other areas, become worse in those that it is already in. I am willing to take that risk for the possibility of reduction in pain, increase in blood flow to my foot/ankle, and maybe be able to put some weight on my foot again. It is not much fun sitting around with my foot elevated above my heart all day, every day just so it doesn't turn purple.

I hope you are both having a somewhat better day than you were yesterday. I know you both have been having a tough time lately.
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