One of the most annoying things about CRPS is people trying to tell you what is best. I have been told over and over, by everyone I know, “move it or lose it”. And while this is true to some degree, overdoing things with CRPS can actually make it worse.
This stems from the general lack of knowledge surrounding CRPS. Nobody in my family has bothered to research it, so they just spout off whatever they have been told to do for simple injuries or their own problems. My mother told me to put ice on it. That is a huge CRPS no-no. My step father says “I couldn’t use my hand after my stroke, but I got it back” yes, you got it back because your brain lost the ability to use it, not because your muscle control centre has fried itself. And I can’t very well play Xbox with my ankle. My brother says “push yourself, push yourself” which is counter intuitive when dealing with dystonia. Walking on my crunched up, sideways foot is not in any way helpful in getting rid of pain.
(standing on my foot)
But “move it or lose it” is my biggest pet peeve. People don’t seem to understand that my muscles are wasting even though I walk my dog, go for walks, have weekly outings to the mall, and have generally continued life as normal for as long as possible. My friend with CRPS was able to mostly overcome the wasting of her legs by getting corrective surgery on both ankles, a step that I do not yet qualify for.
I currently walk on the pad of my pinky toe, and the bones have started grinding together. So walking is extremely painful, even without the swelling, pain, and contortions of my foot. I wear a semi usefully ankle brace to stop my ankle from rolling and breaking, but it does nothing to correct the posture of my foot and ankle. So no, simply using my leg won’t fix it.
People also assume that this will go away. They tell me “it can’t be that bad” and “you’ll get better if you try hard enough”. There is no cure for CRPS. It has a chance to go into remission, but then you have a much higher chance of it coming back from something as simple as stubbing your toe. The chances of remission drop substantially after six months.
It bothers me that no one I know will do any kind of research. They remain ignorant and hurt my feelings with their insensitive comments. Having to explain over and over that it won’t go away and that there are no affordable treatments breaks my heart.