Originally Posted by Karel1957

For 3 years after what they thought was shingles, then post herpetic neuralgia, then lupis,now rsd on my right and left buttocks. I cannot sit , lie down. Im on fentanyl and morphine for the pain. The redness is so severe. If i dont sit on a ice bag constantly, i would be in the emergency room. It has been my only way that i am able to function. The allodynia is so severe , i wear nightgowns most of the time, pants ,shorts, underwear, are not for me. If i go out i cant wait to get back home, because the minute i sit the skin literally pulsates. I have been to 15 experts who find my case so unusual. Im allergic to lyrica,and all other drugs like neurontin , keppra, ketamine, etc. I get montly ivs of lidocaine with vitamin c infusion. Which at times do give me at least a day or so of relief. I also have a severe so called rash that comes out periodically over the past three years, that resemble herpes, shingles, yet biopsies say lupus, and lupus specialist say it is just an over interpretation of the report from the radiolist since my lesions secrete mucin and lupus lesions secrete no mucin . Im waitng for further blood workup, but so far i have a 3 experts that nailed it down to crps stage 2 both extremeties. Now i have developed my right let swelling up and down with spasms and burning as well. This all happened after sciatica. And they say epidurals due to steroids, steroids make me worse and i develope such severe edema. Has anyone had such a case. I know for me, ice is the only answer, if my skin is damaged from it, it was damaged from the extreme heat that pulsates thruough my buttocks. Has anyone had a theragram scan which scan the heat sensitivity for rds. Its not a definitive test, but just supports the diagnosis.