Just wondering what it feels like, physically to have CP.

Are your muscles painful? Do they always feel tight?

Does it hurt to stretch contracted limb muscles?

Thanks, it would be great to know to be able to better understand some of the kids I work with.

Just wondering what it feels like, physically to have CP.

Are your muscles painful? Do they always feel tight?

Does it hurt to stretch contracted limb muscles?

Thanks, it would be great to know to be able to better understand some of the kids I work with.

I try to give some answers, but I can only speak for myself; my spasticity is relatively mild, and it only affects my right leg and arm (upper limb more than the lower).

1) My spastic muscles are not painful but I've noticed that they fatigue more easily and if I'm for example been walking for a long time or been to the gym, my right leg may hurt a bit.
It's impossible - or at least very difficult - to get my right side as relaxed as my left, but usually I don't notice the spasticity very much. Maybe I've adapted to it or something.

2) Stretching contracted muscles hurts, not intolerably, but anyway.

Stretching contracted muscles when you're a kid is painful, because you're still growing. At least that's how I've always felt. CP doesn't hurt, per se, unless you knowingly do more activity than you normally would....which not many people do. If I've been on my feet a while, they (legs and feet) start to go out on me. Even though my left leg isn't affected, because I bear most of my weight on it, it tends to go out with the right leg.

i have quadriplegic spastic cp.. meaning it is affecting all my four limbs.. it does hard to bend my legs most of the time.. my left arm is weak so i'm depending on my right arm to do all the work but sometimes my left one helps with the small things.. The muscles didn't hurt but i do feel weak occasionally, feeling like doing nothing.. must be my body stamina..

I'm in much the same condition as Strawberry1 as I understand the reply, except that it's my left side that's affected. The only painful stretching that I can think of off the top of my head is when I have to rotate my left arm to be palm up (as in BP and pulse rate testing). It's not unbearable but more like it's reached it's physical limits and is being strained.
I also walk with a much more pronounced limp when I get overly tired or near exhaustion.
J~

I had many surgical procedures done between the ages of 5 through 17. I have Spastic Hemiplegia CP, but no muscles are spastic or tense, I just can't move my right foot or bend my knees past 45 degrees. The muscles are not painful and I have full feeling in all my limbs. Since the surgeries relieved the spastisity and determined my range of motion, I have been stable and strong. I'm 54, so the joints in my toes and hands are becoming a little arthritic. I use 2 canes when I walk, and I am good with a wheelchair...

I am totally in agreement with strawberry1 and flycatcher. My CP is on the left side. I get fatigued very easy and then the limping gets worse. I am stiff in the morning and after a long day.

I have a lot of secondary issues in the hip/knee/low back that have elevated pain levels to the point of taking pain meds.

Stretching my left leg is painful everytime I stretch it. My right side does fine with stretching. I feel stretches differently on each side too.

I am very clumsy and the older I get the more falls I take. Graceful I am NOT!

My arm is stiff and painful at times. I have a nice startle reflex that irritates me too. I don't have speecch problems unless I am under severe stress.

Other than that I feel like any person out there............... ;)

Lastramy

My symptoms sound exactly the same as yours, lastramy except my right side is more affected than my left.

Edited to add, does anyone think that the reason I am left handed is because my right side is affected? We asked the doctor and he said it's a possibility...hmm..just want to know if anyone else is in the same situation....it's probably true that I am left-handed because my right side is affected, but just want to get a consensus. :)

Edited to add, does anyone think that the reason I am left handed is because my right side is affected?
I think so, especially if you're the only left-handed in your family. I'm left-handed too, and my right side is affected.

My right side is more affected and I'm left handed, but so is my AB father and brother. It does make sence that if you right side is weaker, you would be left handed...

Hi
I have mild (but stubborn) spastic diplegia CP that was just dx'd four years ago. Though both legs are somewhat affected, my R was and is far worse than my left. I had a bunch of foot surgeries in the last four yrs for spastic clubfoot (R) so I have a combo of residual stiffness from that and spasms from the spasticity. I am completely (relatively speaking!) high functioning and active otherwise.

I am pretty new to the spasticity sensations, but I can tell you that the constant spasms can hurt pretty badly. I did not respond to the meds or botox so I am winging it just by stretching and headgames. The muscles fatigue more easily and massaging the muscle can be painful because the spasticity causes it to harden or tense up. In the hips, for example, the tightness has pulled me forward and walking can become a chore. Weather definitely worsens symptoms.

As was stated in earlier posts, each person's experience with CP is so different and differing factors include severity, CP type, body parts affected, and each person's tolerance for pain. I've learned from experience and talking to others that CP is equally different and similar from one person to the next. Even though patients may share the CP diagnosis, each case is completely unique and that can be quite confusing.

Cheers,
Prisc1125

Hey all you left handers........................I am going to be the abnormal/oddball one here and tell you that I am left handed and my left side is the trouble. I am the only left handed person in the family. I reaad somewhere a long time ago about a study that was done with premature births. It seems that a premature or a traumatic birth has a very high rate for producing left handedness. I can't remember what the reasoning was behind it but it is interesting.
I probably could have been right handed. I do almost everything right handed except write and eat. Who knows!

How about migraines?? Does anyone get them??? Mine are troublesome on the right side. Anyone else??

Lastramy

Hi Lastramy
I am pretty ambidextrous, actually. I write, bat, and throw with my right but open jars better and eat with my left. I had an uncle who was the same way (ambidextrous) so I am imagining it has more to do with that than the CP thing. Though I could be wrong, because I had the hand posturing as a child so I guess my body and brain adapted to accommodate that.


Prisc1125

Migraines?! Yep, I get them. Use to get really bad cluster headaches as well. The migraines would last for up to three weeks, subside for a week or so and then return. These were always in the same location, on the crown of my head, just off center to the right (my left side is affected by the CP). After three years of trial and error with different meds, my doctor finally tried an anti-inflammatory called Toradol and it did the trick. I rarely get the migraines anymore but as soon as I feel one coming on I take two 10mg. pills and find a dark, quiet room to lay down in -- and I never leave home without at least a dose or two in my pill bottle. The migraines almost always go away within 20 minutes of taking the pills. Anyone else having trouble?

About that right hand/left hand dominance: I was at my best friend's house shooting darts one night and he was looking through his rule book trying to find a new game. He said "we could shoot with our off hands." I just looked at him and said "You don't like your T.V. much, do you?" :D For some reason he decided we should try something else.

From Lastramy:
I am very clumsy and the older I get the more falls I take. Graceful I am NOT!

Me too, I've been walking with a cane since August of '02. I find without it I tend to be "floor bound" at unpredictable moments.

My arm is stiff and painful at times. I have a nice startle reflex that irritates me too. I don't have speecch problems unless I am under severe stress.

Yep, and wake up stiff as well. The same if I sit at a desk too long. I tend to stammer under stress and mumble when I get really tired, it drives my wife nuts... God love her!

Jack

I wake up stiff and somewhat sore too. I found long ago that caffiene helps as well as a hot shower. My osteo-arthritis doesn't like humidity or wet cold. Dry and dry cold are the best for me... Montana has proven a good place for me. I was born In Los Angeles and I have lived throughout the West and Mid-Atlantic. The Eastern people are nice, but it never felt like home to me. I am a Western type of guy...

Musicmaker, I fully understand what you mean about the weather and it's effects. I grew up as an Air Force Brat so we lived all over the Continental US. The winters here in TN are much harder to take than they were in Upstate NY. There's so much dampness in the air that the cold cuts to the bone. Just in the last couple of years the high humidity Summers have really started to have much the same effect as Winter. Yesterday the temp here was 92° but with the humidity the heat index was 107°. Today's pretty much the same so it's hot and sticky but my back is stiff as a board.

Jack

Just wondering what it feels like, physically to have CP.

Are your muscles painful? Do they always feel tight?

Does it hurt to stretch contracted limb muscles?

Thanks, it would be great to know to be able to better understand some of the kids I work with.

Hey everyone! I'm new to this board, but I'm very excited to be here :)

In response to your questions... I don't remember being in so much pain when I was younger (I'm 18), but in recent years it seems like something always hurts. My muscles often feel tight, but there are some times when they feel almost flimsy. It hurts to stretch contracted muscles, but it's not unbarable, and I find it much easier to stretch my legs now that I have had my tendons lengthened (although they are beginning to tighten up again).

It's really interesting for me to read everyone's response to this thread, especially about the left-handedness. I've always wondered if I am left handed only because my right side is affected more... and about those migraines, I hope I never get them!
I'm not really sure which type of CP I have, because it is something we never talk about (that's why I joined this board, I realized that, in order to deal with it, I have to get to talking about it!) and no one has ever told me. All I know is that it's mild, with my right side being affected more than my left, and that my legs are affected more than my arms.

Now I have a question. My right knee bends inward when I walk, does this happen to anyone else?

Welcome JellyRJFan,
because CP (Spastic Hemiplegia) disables some muscles because of damage to the Cerebellum, the part of the Brain that controls the bodies muscles through nerves, we might only have control of a portion of the muscles in the affected areas. Your right knee bends inward because of this. It takes several muscle groups to move each and every joint in our bodies. The muscles that stabilize your right knee aren't working correctly. This can be a real problem, because your knee is not able to bear its load correctly and the right hip, knee, ankle and foot will be affected, with pain and fatigue eventually if not now. I had several leg operations to correct this kind of thing in me. I was finished with most of my surgeries by the time I was your age. Have you had any operations? Do you have any plans for them in the future? Have you worn leg braces of any kind?

It's amazing just how similar we are, JellyRJFan!

I'm 18, and have the exact same symptoms you do...I've had the same surgery, too.

BTW, out of curiosity, can you ride a bike? I've had trouble with that since my right knee bent in, but I'm looking into adaptive bikes now. And, while we're sort of on the subject, do you have a license? I have a permit, but that's it. Anyway, glad to talk to you =0)

Hey girls,
are you going to drive using the pedals or will you use hand controls? I started driving at 16 in Los Angeles, California. I took driver's training with dual controls, both pedals and a hand control. I have been driving now for 38 years, totally using hand-controls :)

Thanks for the info, musicmaker. I've had 3 operations on my right leg, and 7 in total. I've never had anything done to correct my knee problems, but i've had my tendons lengthened, as I mentioned above, I've also had a procedure where they took the muscles from the left side of my foot/ankle and switched them with the muscles on the right side. I'm not sure what the surgery is called, but it was to straighten my foot out because it was bent inward (at about a 70 degree angle) and down. My most recent surgery was to correct a few problems with my toes. I think I need at least one more operation because my hamstrings are so tight that they pull on my back, and my achilles is so tight that I can't move my foot really, but my mom seems to think I am too old to visit my orthopedic surgeon. I might go on my own now that I am 18, just to see what he thinks.

nutcase- I can ride a bike. I learned at about 9 years old, which was frustrating because all of my friends were riding in kindergarten. I used to be very into extreme sports, and rode a BMX bike for a while. I couldn't do any tricks, but I still enjoyed it. The knee was a problem though. I can't tell you how many times I've hit it on the handle bars, the cross bar, and everything else you can imagine. After I had my hamstrings done it was almost impossible for me to continue skating, surfing or riding my bike, but as part of my PT I would ride my sister's mountain bike with my dad. One day the gear slipped while I was going up a hill, and to make a long story short, I fell on my arm, then the bike fell on top of me and I was almost hit by a car that was ride behind me. The muscles in my arm contracted so much that I couldn't move it and they had to take me to the emergency room! Needless to say I was a bit scared by the whole experience and I haven't done much bike riding since. I have had my drivers lisence for almost 3 years now. Before I got my permit there was some question as to if I could dirve or not because I can't move my right ankle. Now I love driving! I don't use my right arm to steer if I don't have to because it tires quickly, and if I drive for a long time I get leg cramps, but nothing too bad :)

Hi musicmaker,

I've had my permit for two LONG years. I just have this feeling deep down, that I have the ability to drive without any assistance. I have driven fine before, but I get extremely nervous when driving with my mother. She admits she may not be the best teacher, my dad would be better (he taught my sister) and I've driven with him, and I'll admit to making nerve-wracking mistakes. (I must've looked at my side-view mirror too long once, because I almost drifted off the road) And I do have trouble doing left-hand turns and straightening out in time. Lol, I'm sure you wanted to hear all that.

Anyway, my mom made an appointment with this program that tests you to see whether you have the skills to drive (mostly for senior citizens, but I don't care). I will see how it goes from there, and after I'm evaluated, I will seriously consider hand controls, etc....all I want is FREEDOM....to have the wind in my hair, to have that feeling of EXHILIRATION! lol, a little over the top, but hey.

I konw I will eventually get my license, it's just a matter of when and how. And luckily college freshmen can't have cars on campus, so I won't feel too out of place. :D

ETA, JellyRJFan, we cross posted, but I just read your post =0)