#197182 - 01/24/11 03:38 PM
Adults with CP (and pain)
|
Stormi
Member
Registered: 08/17/00
Posts: 500
Loc: USA
|
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
|
|
Top
|
|
|
|
|
#197294 - 01/27/11 12:54 PM
Re: Adults with CP (and pain)
[Re: Stormi]
|
shadowfax
Junior Member
Registered: 01/27/11
Posts: 3
|
Wow..I too am having very similar issues, with the same form of CP, I might add. Have you been able to find something that helps, treatment wise? You aren't alone, I assure you of that - and it's nice to know I'm not alone, either!
|
|
Top
|
|
|
|
|
#197346 - 01/29/11 12:24 PM
Re: Adults with CP (and pain)
[Re: shadowfax]
|
Stormi
Member
Registered: 08/17/00
Posts: 500
Loc: USA
|
You wouldn't believe how many people are exactly like us with the exact same form of CP. I posted this on a CP group on Facebok and tons of women came out saying that they are exactly like us.. Seems like the other types don't experience this..
Yes it is so nice not to be alone after all this time dealing with pain and fatigue. You work so hard to achieve a level of independence to watch it slowly fade away right before your eyes..
Even with therapy
_________________________
"Only those who dream the absurd, can ever do the impossible" -Hellen Keller
|
|
Top
|
|
|
|
#197364 - 01/30/11 06:59 PM
Re: Adults with CP (and pain)
[Re: Stormi]
|
shadowfax
Junior Member
Registered: 01/27/11
Posts: 3
|
stormi - a very hard thing to accept, or be forced to adjust to, as you well know. I lost a year and a half of recovery and therapy - not something I can replace, either. Not only is it physical, but mental, too. I'm so exhausted - even when slowing down and trying to pace myself. Also am experiencing other 'common' CP issues that happen as you get older,more 'life changing' factors. I'm hoping that things calm down a little, and soon! My body has been through so much,I'm hoping to be able to resume physical therapy in a few months. It's a bit too cold now to try, as much as my heart wants to, my head knows the timing just isn't right yet. You take care - I hope you feel better soon! Can you tell me where on Facebook to look for the page you posted on? Thanks very much!
|
|
Top
|
|
|
|
|
#197540 - 02/08/11 07:26 PM
Re: Adults with CP (and pain)
[Re: shadowfax]
|
Stormi
Member
Registered: 08/17/00
Posts: 500
Loc: USA
|
ShadowFax
Cerebral Palsy Family Network
On Facebook
You can also find me Tara Schaub
_________________________
"Only those who dream the absurd, can ever do the impossible" -Hellen Keller
|
|
Top
|
|
|
|
|
#197678 - 02/24/11 10:54 AM
Re: Adults with CP (and pain)
[Re: Stormi]
|
shadowfax
Junior Member
Registered: 01/27/11
Posts: 3
|
Stormi - thank you! I'm sorry it took me a while to answer you. I will check out the facebook page. I sincerely appreciate your time and effort. Hope you feel better soon!
|
|
Top
|
|
|
|
|
#198914 - 05/12/11 09:13 AM
Re: Adults with CP (and pain)
[Re: shadowfax]
|
Fierceness2011
Junior Member
Registered: 05/12/11
Posts: 1
|
Ive lost the last DECADE of my life and a career I LOVED from this syndrome! I feel cheated and like its so unfair! I was a wild teenager and did a LOT of walking and standing while running away. I used to be able to walk MILES everyday. then I clamed down and in my 20's a small pain started in my foot and now my whole body seems in on the act. I then tried pain management and went to school for cosmetology. I made it thru 9 months of 8+ hours a day standing and using my hands. I got my license and went to work. After 6 months of walking miles for the bus carrying or hauling 10-20 pounds of tools for work I couldn't do it anymore. I finally thought to myself "its NOT okay to hurt this bad all the time and to hardly be able to move at the end of the day" I was actually having to "throw" one leg in front of the other at the end of the day getting home. Now my life is very different. I lay on the couch, I do light housework and sometimes go to the store. If I do anything more, I can "push thru" and get it done, but that means 1-3 days of doing NOTHING in order to recover. I just wish I had know that this would happen to me or could happen. Nobody EVER told me, no doctor not even my mom who's an occupational therapist knew or told me about FIS.
Now, even tho I have a doctor whos helping me with pain meds and anti spasticity drugs, I still have no "credible definitive medical diagnosis" for SSI and for my own peace of mind. I want to know whats compromised, what to expect, and what I can do (and not just exercise or physical therapy.) about things. But there are NO DOCTORS who deal with adult CP. Ive even had to EXPLAIN CP to a DOCTOR or 2! My doc thinks the best place to go is the Mayo Clinic in AZ. They might help but with no insurance(which my pre-existing condition excludes me from all but the most expensive of) the first VISIT fee is 650$. Not to mention airfare,hotel,food, and the costs of the tests and procedures. (and MRI at a DISCOUNT place is $500-1000$) So i guess its pie in the sky....Anyway Im SO glad to find a place to talk and share about this. More later,
DIVA
|
|
Top
|
|
|
|
|
#201969 - 04/08/12 09:11 PM
Re: Adults with CP (and pain)
[Re: Stormi]
|
bes
Junior Member
Registered: 04/08/12
Posts: 2
Loc: Ohio
|
Hi I just joined. I can not believe there is someone out there like me. I have been suffering so. I never let my c.p stop me when I was younger. I was like everyone else or tried to be. But when I got older I started to be in a lot of pain. It has been a few years of living with the pain and my mobility getting worse. I am afraid.
I wish I was stronger. I go to see a new doctor may 24th.
|
|
Top
|
|
|
|
|
#203363 - 02/05/13 04:03 PM
Re: Adults with CP (and pain)
[Re: bes]
|
jazzman1960
Junior Member
Registered: 04/04/08
Posts: 3
|
My wife and I both have CP, and are experiencing the same thing. We're in our early 50's, and did well until about 10 years ago,
|
|
Top
|
|
|
|
|
#203418 - 06/20/13 10:31 AM
Re: Adults with CP (and pain)
[Re: jazzman1960]
|
bes
Junior Member
Registered: 04/08/12
Posts: 2
Loc: Ohio
|
I wrote on hear a year ago. I am experiencing more pain as the months roll by. Has anyone found any treatments the help?
|
|
Top
|
|
|
|
|
|
