Cerebral palsy - Post Impairment Syndrome?|
I never knew that this could happen. Post Impairment Syndrome...Having Cerebral Palsy you would have thought someone might have mentioned that this happens far too often.. For years I've been experiencing chronic pain and fatigue that keeps getting worse year by year. I might have known if doctors didn't refuse to see me because I'm an adult with Cerebral Palsy. They would just pass me off to a new doctor who would then send me to someone else. Meanwhile I suffer in complete misery.
Starting to think I had MS or Fibromyalgia worrying what my future would hold. My spastic dipledga effects my legs mainly so it was a huge shock to have my back/neck/hips/knees/ankles/shoulders/fingers/wrists/going down with the ship.
Apparently if I hadn't walked as long as I did probably wouldn't have chronic pain all over. I find it very difficult to accept that when we were kids we were treated so well and then once we became adults we are left to figure all of this out on our own. Being dismissed off hand not really finding a solution for the pain is unacceptable to me and everyone who lives with Cerebral Palsy.
I started suspecting maybe a type of Post Polio Syndrome it had many of the same symptoms. Doctors didn't take them serious when they years later said how much pain and fatigued they were. So I did some research and they call it Post Impairment Syndrome for Cerebral palsy patients.. We overuse muscles that work because the other muscles don't... Actually it makes perfect sense. You wouldn't drive a car out of line you would have to fix it so it wouldn't fall apart. Guess I'm just falling apart earlier then someone else without CP.
Problem is nobody mentions it. So you are left feeling like you didn't do enough and maybe If you tried harder when in reality you need to take it easy and pace yourself. Gentle exercise saving your energy by using a wheelchair or cane.
I'm talking about the Adult Cpers that are like me.. I know a lot of you aren't in pain and are feeling pretty good. Having Spastic diplegia is the most painful version of Cerebral palsy.
Edited by Stormi (01/24/11 03:39 PM)
"Only those who dream the absurd, can ever do the impossible" -Hellen Keller