By Gracie Gean Bagosy-Young
RSDSA says that “Complex Regional Pain Syndrome occurs when the nervous systems and immune system msifre as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain.”
The level of pain is measured as one of the most severe, which is no surprise to those of us who suffer from it.
I am constantly asked “What is remission like with CRPS?”
My answer is simple, “Remission is not what people generally think it is.”
I have known remission twice. Remission does NOT mean that we are pain-free. Remission means that we are in a state of LOWER pain levels that we can regulate and maintain. It means that we can get our bodies to heal from injuries without uncontrollable flares. We still have pain.
Our CRPS areas still communicate with us all of the time-just not in gigantic ways. They communicate in tolerable ways. I still have to eat an anti-inflammatory diet to prevent flares. I still have to keep a close eye on the weather, although I can tolerate much more than I could before.
I do still need FAR MORE rest than “normal people.” I soak, soak, soak in hot baths with Epsom salt! I take a ton of supplements. I need more quiet than I ever have before in my life. I need calm. I still get flustered with too much noise-it does not always equate to pain, but it does fluster me and sometimes I get angry that I am flustered. I am still terrified of falling down or getting injured. I do not let that fear stop me from living, but I am not going rock climbing any time soon!
I am a lot more relaxed now than I ever was in the past. Things that used to make me batshit crazy (a technical term) don’t make me bat an eyelash now! Anger is not worth the pain it will cause me. Anger and stress DO still cause me pain! In fact, stress is the quickest path to a flare. The skin on my CRPS limb never feels normal, even when it doesn’t hurt. I don’t have the words to explain how it feels, but it isn’t right.
Remission with CRPS is not the same as remission with cancer. I wish that we had a more appropriate word to use so that people would understand this state better. It seems that when people hear “remission” they think that means “gone.” That is certainly not the case. We still hurt every minute of every day, even when in remission.
“Remission” with CRPS is not a return to “normal” life, it requires daily effort to maintain.
Today is another day!