After months of non healing, about 3 weeks ago I got the news that my wrist bones were mostly healed but it was bitter sweet as my hand and wrist was unusable and disfigured and I was diagnosed with Reflex Sympthatic Dystrophy otherwise known as Complex Regional Pain Syndrome.
A rare and painful condition of the sympathetic nervous system.
After an injury the response of the nervous system is altered and misfires signals to the brain so pain, inflammation and other symptomatic responses are altered.
There is no cure and it often spreads to other parts of the body. My upper arm and shoulder of the same arm (right) has also been affected.
It is the most painful medical condition known, above childbirth and amputation, as it’s not a response to the injury as such but a constant misfiring of pain signals to the brain.
My wrist has muscle atrophy so I’m unable to move or rotate it but my specialist told me a couple of weeks ago to get rid of the splint, grit through the pain and bloody move it. His words. Move it or lose it.
So that’s what I’ve done, I have a great physio and I’m signed into a study that starts in just over a week. I’ve already had small but significant improvements.
I’m tackling it usual Mel style, like a dog with a bone. Stubborn, strong and determined.
It’s been hard and painful but I’m glad to know finally what’s wrong as I’ve known the whole time something wasn’t right. I didn’t suspect this as I’d never heard of it. My GP had never before me ever seen a case.
I’m on nerve blockers and strong opioids, I wasn’t happy with taking the drugs but my specialist said that this is a critical time and he was happy to prescribe whatever necessary to get me moving my wrist/hand. If left unused because of the atrophy it will become a permanent disability. So I’ve got a cabinet full of strong codeine medicine, not really ideal but I don’t have a choice.
I’m staying positive despite some pretty grim stories and possible outcomes. My physio is shocked at my progress. 3 weeks ago I could not move my wrist and before that my fingers were clawed. Before the diagnosis I stretched my fingers out every day literally constantly and I can now straighten them, they’re not pretty but they’re moving and now I can rotate my wrist slightly and I can move it to a small degree. I can now this last week pick up a glass and grip a knife.
It’s been emotionally and spiritually draining and physically very painful but I feel okay. Im going to do this, I really think I’m going to be one of the people that goes into remission long term. I feel it in my bones, no pun intended