I've been MIA for a couple of months while trying to deal with this CRPS and the overwhelming fatigue each and every day. Will be going to the airport in a little while to travel to cold country to see my Mom for the holidays - I'm really not looking forward to traveling, even though I'll have wheelchair assistance and have a seat in first class.
After the 2nd left lumbar sympathetic block on October 27th I had a nasty reaction. I remember saying over and over that my head was exploding. When I was wheeled out to my ride, I looked at my feet and couldn't for the life of me figure out how to make them move. Everything in my vision was gray - trees, vehicles, sky, etc. and my head felt like it was exploding. The woman who gave me a ride helped me into my house (still couldn't walk at that point) and I collapsed for about 10-12 hours. I didn't even hear the phone ringing, and it's about a foot from my head. There was no relief from that block.
The specialist scheduled me for 3 genicular nerve radiofrequency ablations on Nov. 17th. Someone other than the woman who brought me before had to give me a ride, because she said she was too frightened from my behavior on October 27th. I talked to the anesthesia department about my worries about the prior time, and the anesthesiologist was great. She thought that perhaps I needed fluids, as the versed and fentanyl were same for every procedure I've had done there. She pumped me full of fluids and I was fine. Each time my procedure was 13-14 hours after midnight, the midnight hour in which I had my last drop of water.
There's one area (the vertical shooting/burning inside) that is now okay four weeks after the procedure. The allodynia on lower right side of knee has lessened enough that I can tolerate it with use of prescription pain cream. The feeling like bugs with needle feet are constantly crawling up and down my leg hasn't gone away (it's not that painful, just annoying). However, there are two areas (the upper knee area nerves) that have not become better at all, and lowest pain level is a 3 - constantly - in those two areas. I can't take any prescription meds (intolerant). The specialist said this CRPS is what it is, and he would be willing to repeat the 3 genicular nerve radiofrequency ablations in 6 mos. - 1 year when the nerves grow back. He told me that he spent extra time and was very thorough when he did the procedure on me last month. I do remember the pain when he was doing it, and squeezing the hand of the poor anesthesiologist, and him telling me to not move at one point.
My primary said he's never had a patient with CRPS in the knee in the 30 years he's been practicing. My Mom wanted me to go to Mayo Clinic when I'm up there visiting for another opinion. I talked with numerous departments, and there's not a soul there with experience with type 2 CRPS of knee. Neurology will see/treat type 1 CRPS of knee. I'm so frustrated, and am just resigned that this condition won't go away. My primary checked my thyroid, B12, etc. and all levels are great. The specialist said the fatigue is certainly not rare with CRPS. I have to force myself to go out and go to the grocery store, and am living as a resident of hermitville these days.
@Legin - I don't know how you cope so well with the CRPS.
May all of you have a peaceful and beautiful holiday season, and may 2016 be a huge improvement on this year.
United States
