So I think that my CRPS (complex regional pain syndrome) has probably spread to my right leg, and possibly my left leg from my recent back surgeries. I'm 3 mo out from my last surgery now, and was making slow but steady progress, as expected, up until about
a month ago, when things started going down hill. At first I thought it was just a flair up of inflammation/a minor setback, but I never recovered, and things have only gotten worse as the weeks have gone by. Besides an increased baseline pain level and a shift in pain quality, I now have moderate to severe allodynia in my right leg and mild to moderate allodynia in my left, both of which are continuing to worsen. I've had little to no improvement in the preoperarive weakness in my feet/any minor improvement that I had made has now been lost, and my right foot is actually worse off than before surgery. And as of this past week, I'm now also getting intermittent color changes in both legs/feet, with the right leg being worse than the left. Plus there is a questionable temperature change in the right leg.
I don't see my PM for another week, but I did speak to him very briefly a few weeks ago, and he was quite concerned. When I asked him if he thought my new symptoms (which were less then than they are now) were related to my CRPS, he said most definitely yes -- and the neurosurgeon & my PT's also agree.
The prospect of my CRPS having spread definitely scares me, especially since I don't know what more we can do other than what we are already doing, which obviously doesn't seem to be helping or stopping things from spreading/worsening... It also makes me nervous because I just found out that I most likely have one, and possibly as many as 3 more surgeries that need to be done over the next few months. Those surgeries are unrelated, but any surgery puts me at risk for spread, and I worry that if my nervous system is already so hyper sensitized from everything that is going on, the CRPS might be even more likely to spread further. Plus, one of those surgeries (which I'm hoping we will be able to avoid for a while, at least) will be on a body part that is already affected by CRPS, and I'm afraid it would send me into a horrible flair, and possibly advance my CRPS in that area even further...
I'm not really sure what I'm looking for in posting this other than support. I think I'm currently the only actively posting member who has CRPS, but I don't really have any family or friends that I can talk to about
this (those who I have tried to talk to don't understand) and it is becoming more and more distressing to try to keep all this bottled up inside, not to mention dealing with the worsening pain and other symptoms...
Post Edited (skeye) : 12/5/2017 12:21:28 AM (GMT-7)