Has your Cerebral Palsy gotten worse over the years?
Mine has and many of my friends have experienced increased fatigue & pain throughout their bodies. Many of us who never experienced Cerebral Palsy symptoms in other parts of our bodies are now feeling the effects that this lifelong disability has done to us over the years.
How To Cope With Chronic Pain from Cerebral Palsy
I have Spastic Diplegia also known as, Paraplegia. Both of my legs are affected. I learned how to walk with a walker & braces and steadily moved up to canes and more braces over the years with a ton of surgeries in the mix. After the age of 14 and my last major surgery, there had been a steady decline in my walking. My fatigue & pain increased.
Picked out my first wheelchair at age 19 and have been on wheels ever since. My chronic pain kept getting worse despite, therapy & rest. Worried about my future, I searched the internet looking for anything on CP, pain/fatigue.
All I found had been children and how they were treating them for pain and fatigue. I tried to contact doctors who specialized in Cerebral Palsy, but they wouldn't see me; I was too old at 20. They focus on the kids and after that, you are on your own. If my ortho hadn't retired he would have seen me, I had been his patient since age 3.
After several years of noticeable decline in my health, I decided to create a support group on Facebook for adults who had CP and living with chronic pain. Desperate to talk to anyone who felt like I did. I couldn't hold down a job any longer, and I had been pretty much bed-ridden for a long time due to my nerve pain & arthritis. Having a proper home hospital bed could have helped during this period.
It didn't take long until I had a few people with CP and chronic pain and then more came, and I started to realize that most of the people who were suffering were women with a few men thrown in. My group is over 100 people now, it's a closed group so we can talk with no judgments. It's all word of mouth how people find the group.
We all are going downhill despite therapy & working out. Some are still (barely) walking and need a doctor but can't find one that will focus on the issues related to Cerebral Palsy that we are facing.
Lately, I have noticed a startling turn of events. People who have had "slight" CP, very mild CP are now facing a slow decline as well. We are all declining at different rates.
Many of us are living with the following symptoms:
- Widespread Chronic Pain
- Nerve Pain
- Overwhelming Fatigue
- Sudden onset of swallowing issues where there wasn't one
- Twitching of fingers/hands (issues with the good hand or leg becoming just like the affected one.)
- A decline in balance Gait issues
- Gradual Breathing Issues
- flu-like symptoms all the time
- Coordination issues that weren't present before or have gotten considerably worse
- Back issues are the #1 pain issue for everyone that I have talked with
- Scoliosis getting worse
- Rib pain
- Brain Fog/concentration issues due to the extreme pain
The Problem With Chronic Pain Medication & Treatment
If you would look up Fibromyalgia you'd have a list of everything we've been dealing with as adults.
Most of us can't tolerate Baclofen the preferred antispastic med. The side effects are miserable and if we do take it it's usually at night to sleep. A lucky few can take it and it works quite well for them for a while.
Most of us are taking Anti-inflammatory drugs to reduce the pain associated with muscle strain & arthritis. Unfortunately, most of us can't take it for long because of stomach issues.
I've been sent to this doc and that doc and another doc, I eventually lost count. I liked it when I had one doc for my CP and I didn't have to bounce around like a ball from doc to doc and constantly get checked out in the following areas:
I have to find someone who specializes in each of these things and hope they can put together something that will reduce chronic pain and fatigue...
I would love it if they focused on reducing spasticity without baclofen since most of us cannot tolerate it. That would reduce 90% of the pain and the rest would most likely be arthritis which is a little easier to deal with.
Researchers should pay attention to the adult community as well as the children. 90% of children with Cerebral Palsy live to be an adult and live a normal life span.
These changes start early in the 20's and 30's so it helps to have a plan and be ahead of the game.
If you are in pain and would like to join the group, look for "Cerebral Palsy Pain & Fatigue" on Facebook.
Image credit: *Image courtesy Flickr creative commons.