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Old 01-17-2014, 02:40 PM #11
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Originally Posted by Electron View Post
I would be very skeptical of the idea that exercise can make your PN worse. The neurologists at Mayo Clinic in Rochester told my mother and I that increased activity will not make our conditions worse. And this goes against everything I have read. Exercise does a myriad of good things for the body, including influencing which genes get expressed. With exercise (and plant foods) the good genes are enhanced and the bad genes suppressed. Here is an article I found on the subject, but search for yourself and you will find many more:
http://healthland.time.com/2012/03/0...hange-your-dna

It is quite possible that you will have more pain temporarily after exercise, but in the long term I believe it is nothing but good.
Ron
Not for a CMTer. I'm sure it is different for others.
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Old 01-17-2014, 02:46 PM #12
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I think that if one has damaged cells, with damaged mitochondria, which is one current theory about PN now and other diseases, that exercise would be limited by that damage.

You might be able to do some, but not what you would like or what others might tell you to. The mitochondria process glucose and fatty acids, for energy, for the muscles etc. And if they don't work properly, you are limited by that loss.

I think CMT would fall into this category of poor metabolism.

In other words, don't push...pay attention to what is weak and set limits. One sign would be a lack of tolerance ...if you build slowly and hit a wall and can't get past it...that would be a poor sign for further exercise limits.
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Old 01-17-2014, 03:00 PM #13
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Low to moderate intensity as advised by a physical therapist. Not exercising to a point of exhaustion, cutting back and if the pain lasts for more than 48 hours after exercising a CMTer has done too much.
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Old 01-17-2014, 04:37 PM #14
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I have several conditions, hopeful.

My PN is so severe that I cannot walk for exercise.

I find that aerobic exercise in the pool, and using the Nu-Step machine and other variable resistance machines work well for me.

Often the YMCA will have a heated therapy pool, or a local hospital.

For us NO PAIN is essential.

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Old 01-17-2014, 04:46 PM #15
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There are mutations in the MFN2 gene that cause the most frequent form of autosomal dominant axonal form of Charcot-Marie-Tooth Disease. CMT2A.
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Old 01-20-2014, 01:02 PM #16
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How about lifting weights? If balance, walking, pain, etc. makes it too difficult I always resort to weight, I can sit and do all major muscle groups, even without shoes on, yet still get exercise. Weights are not my favorite but on those days I don't want to deal with the pain , weights are better than nothing.
I do try weights only 2 lbs for upper body. It seems like no matter what I try I'm left in so much pain I'm reluctant to try again. I'm going to keep trying.
Thanks for the input!
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Old 01-20-2014, 01:05 PM #17
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There are mutations in the MFN2 gene that cause the most frequent form of autosomal dominant axonal form of Charcot-Marie-Tooth Disease. CMT2A.
Hi Kitt,
I may have ask you this before but did you have testing done by a geneticist? I'm thinking if that is how you were diagnosed that way I might give it a try.
Thanks for the info. I appreciate it!
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Old 01-20-2014, 01:08 PM #18
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Originally Posted by Idiopathic PN View Post
My pain is getting worse but I walk at least 4-5 times a week for at least 35mins. There are days when it is more difficult than others. After every walk, I feel that my feet and legs are extremely flaring up. Even with the thought of more pain after walking, I still try to do it simply because it helps with my mood and makes me feel that I can still be active. Walking outside or on treadmill these days is even more challenging because i wear long thick pants and anything that touches my skin makes it more prickly.

My doctor also told me once about exercise "nothing that you can do will further damage the nerves". Maybe he is right BUT i think that when I overdo it, the pain becomes so unbearable. So, for me, to be able to continue my walking, I have to stick to my "tolerable speed and time".
This is exactly how I feel. I don't want to become a couch potato but the pain just from walking is so unbearable at times. I'm going to slow down my speed again and keep trying.
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Old 01-20-2014, 01:11 PM #19
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Originally Posted by ElaineD View Post
I have several conditions, hopeful.

My PN is so severe that I cannot walk for exercise.

I find that aerobic exercise in the pool, and using the Nu-Step machine and other variable resistance machines work well for me.

Often the YMCA will have a heated therapy pool, or a local hospital.

For us NO PAIN is essential.

Hugs, Elaine
Thanks! I just got a script for PT from my rheumo. I'm going to see if I can find a place that does water therapy. I think that may be good for me.
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Old 01-20-2014, 02:03 PM #20
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Hi Kitt,
I may have ask you this before but did you have testing done by a geneticist? I'm thinking if that is how you were diagnosed that way I might give it a try.
Thanks for the info. I appreciate it!
No, I had EMG/NCV testing done. And other things - part of the exam. No need to see a geneticist. I already knew that I had CMT as it is in the family from way back. The neurologist just confirmed what I already knew and my symptoms way back then were near nothing. But CMT just kept progressing as it does. No one with CMT knows for certain how they will end up. CMT symptoms vary greatly even within the same family. This is so true.

Symptoms of CMT can become evident when you are young, old, or in-between. Or they might not be that evident but you can still pass it on. It is a complicated syndrome with so very many types of it identified now. I have one of the most common types - CMT1A. Even today CMT is misdiagnosed as something else. A good neurologist who knows CMT is the one to see.

Thanks for asking.
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