Cerebral Palsy Support Group
Cerebral palsy or CP is the most common childhood physical disability. It is a permanent physical condition that affects movement. There is no cure for cerebral palsy, but various forms of therapy can help a person with the disorder to function more effectively. If you or a loved one has cerebral palsy, join the group to share your experience or get advice from others.
We all know that our CP gives us a variety of symptoms, and know that "some days are good days, and some days are bad" and that we just have to live with it. But the problem I am having, is that ever since I turned 40, I am having more frequent bad days that seem to come in "bouts" which leave me in pain and exhaustion.
I have mild spastic triplegia, which mostly effects my right leg. Now some days the waves of pain and spasms, stiffness and exhaustion, seem twice as bad as usual. Some of the things are simply aggravated by aging, like stiffness and inflammation. And other things like getting tired twice as quickly doing physical activities, now I have to limit myself to a few hours of work around the house and yard - or I will wake up feeling like I was in some kind of extreme bootcamp training or something.
Besides the increase in existing symptoms, I have slowly developed new ones. These new symptoms seem to correlate with when I am having exaggerated bouts of other symptoms. I am now having "shooting nerve pain" in my right leg, which sometimes feels like burning. Sometimes when I get up in the morning, or even after sitting at work, both of my legs feel weak as if I am suffering from mild paralysis. When these bouts come, sometimes I feel as if I am going to pass out and fall down for a few seconds. These symptoms have me worried, that I may be developing some other degenerative neurological condition like MS.
So I guess I have two questions:
1) Do you have "bouts", where out of nowhere for 1-3 days you have both significantly increased intensity of CP symptoms, but also show symptoms that are normally not present every day?
2) Do you feel that over time you may have developed new symptoms in general, like burning pain or sudden weakness or a sensation of mild paralysis?
I see my Neurologist in a few days, and am trying to figure out what all this increase in symptoms means. I saw him last year, and he seemed to completely dismiss my concerns of a possible degenerative condition. So my current idea is to see what other CP folks have experienced, and decide how hard to push my concerns with the Neurologist.
I have mild spastic triplegia, which mostly effects my right leg. Now some days the waves of pain and spasms, stiffness and exhaustion, seem twice as bad as usual. Some of the things are simply aggravated by aging, like stiffness and inflammation. And other things like getting tired twice as quickly doing physical activities, now I have to limit myself to a few hours of work around the house and yard - or I will wake up feeling like I was in some kind of extreme bootcamp training or something.
Besides the increase in existing symptoms, I have slowly developed new ones. These new symptoms seem to correlate with when I am having exaggerated bouts of other symptoms. I am now having "shooting nerve pain" in my right leg, which sometimes feels like burning. Sometimes when I get up in the morning, or even after sitting at work, both of my legs feel weak as if I am suffering from mild paralysis. When these bouts come, sometimes I feel as if I am going to pass out and fall down for a few seconds. These symptoms have me worried, that I may be developing some other degenerative neurological condition like MS.
So I guess I have two questions:
1) Do you have "bouts", where out of nowhere for 1-3 days you have both significantly increased intensity of CP symptoms, but also show symptoms that are normally not present every day?
2) Do you feel that over time you may have developed new symptoms in general, like burning pain or sudden weakness or a sensation of mild paralysis?
I see my Neurologist in a few days, and am trying to figure out what all this increase in symptoms means. I saw him last year, and he seemed to completely dismiss my concerns of a possible degenerative condition. So my current idea is to see what other CP folks have experienced, and decide how hard to push my concerns with the Neurologist.
-
I haven't written in my diary on my computer since May because I thought that my computer was dying. I got away from writing but my computer is hanging in there. I think that I will start writing in it again. It's so therapeutic.
-
So voc rehab finally got in touch with me...it took like six months finally. The voc rehab person that they assigned to me is a lawyer and extremely knowledgable on disability law and he seems to know a great deal about how to get people placed in jobs and how to make their resumes pass ATS. I was really surprised at how articulate and energetic he is. I guess my question is how much I...
Whenever I see commercials for Lyrica, the symptoms they describe seem just like the ones I have developed over the last few years. But I don't know if the Neurologist would be open to letting me try it.
sometimes I feel like I've aged 10yr's overnight, Seem's as though I am have A lot more bad day's then good, I think that's just everyone though.
As for lyrica, I didn't know it could be used for cp, But, I guess worth mentioning to the neurologist, antything's worth a shot
We'll see how it goes...
So I have been on the Gabapentin for two weeks now. Started at 200mg/day and now at 400mg/day. And I have to say it definitely helps with the burning/shocking/shooting type neuropathy pain. It is sedating, so it seems to help a little with spasms and tremors too. I am going up to 600mg/day during this week, so I will give another update later. The two main side effects are sleepiness and constipation: I am have a ridiculously high tolerance to sedatives so I don't feel sleepy at all, any constipation is minor and reduced greatly once I get used to a new dosage. I definitely recommend people with neuropathy pain give it a try.
I am 36 years old with similar "mild" CP and in the last 2 years or so I have experienced every single thing you mention there. Burning pains, tingling sensations, massive increase in muscle spasm, nerve pain, and all in bouts as you say, I was fully convinced I had MS I still think I might to be honest, but my Neurologist ruled that out. I sympathise deeply with you for what you are going through, in a weird way I have found it reassuring that someone else is experiencing the same thing. I was always told that CP doesn't deteriorate with age I think based on our experiences and everyone else here we can call that out as BS.
Coincidentally I just saw my Neuro last week. He finally admitted that some CP folks see an increase in symptoms as they age. He said they now think the problem is very similar to the well known "Post Polio Syndrome", the onset of PPS symptoms seems almost identical to aging with CP. The one tidbit that fit into my ongoing problem of "bouts", is that they said to be very careful about keeping one's pride in check to avoid overexertion on "good days" - otherwise that can cause a few subsequent bad days. You are getting the symptoms right on cue, 35yo is technically the beginning of "middle age" when our HGH starts to plummet off the cliff (that's why pro athletes usually have to retire by 35).
On a side note I was just wondering and apologies if I'm being too personal but have you experienced any digestive issues as you've gotten older IBS type problems that sort of thing because I've suffered that over the last 18 months or so a lot of constipation and diahorrea etc is that something else that's common in ageing with our condition. Thanks in advance it's great to talk to somebody who can relate. Have a good one :)
I would say "yes" to having developed mild IBS type symptoms. Some degree of this we can blame on meds, if we happen to take them. And as far as the constipation goes, some of that is normal aging. But in the end I think this has to do with internal spasms etc, because the CP is going to affect us internally too. Too be blunt, pun intended, I often light up some weed on the toilet - works wonders!
The Doctor's familiarity with CP aging, combined with their unwillingness to acknowledge it, is incredibly frustrating. Especially their refusal to understand that some of us age into a condition of "chronic pain". In in my case, the fact that my CP is mild makes them take me less serious...just because my only major outward symptom is walking with a dragging limp in my leg, doesn't mean that 3/4 of my body doesn't feel like hell most of the time. I guess we just have to be a little pushy with them occasionally.
Eh, whatever, life goes on. Now I am taking up activities that don't exert my legs too much. A lot of the ski resorts now have downhill mountain biking courses. Ride up on the chairlift, and let gravity do the rest. Although I don't think I will be taking big jumps, like I did 30 years ago in my avatar pic!
Have a good weekend!
I struggled to compose myself. So, finally, I decided to leave the movie, Just so They wouldn't think I was Drunk and call the cops (that scenario goes through my mind when stuff like that happens)
But, Yah, I have noticed Myself going off balance more.
I have noticed myself getting tired faster at the gym some days and maybe a little confusion.