Hi Everyone,
I started walking about 2 weeks ago. That is a big thing for me since I was such and avid exerciser before I got sick. Suring the last few years I have tried to start again but always ended up in too much pain.

I mentioned in one of the other posts that I started taking 5 mg of Percocet about a half hour before my walk. It stays with me for a little while later. But when if wears off I can feel the pain.

I'm wondering if what I'm feeling is what most people call the burn after exercising. I was always familiar with that.

Or is the pain trying to tell me that I shouldn't be doing this. The problem is I am losing muscle and muscle strength. I feel like if I don't start doing something it is going to continue to go down hill for me.

Will I eventually get over this? Is it just because I am not use to exercising anymore? Has anyone else had this problem?

Please let me know what you think. I don't want to do more damage but I also don't want to end up with no muscle strength.

Hi Hopeful!
My husband and I are caught up in exactly this dilemma and I am afraid I don't have an answer.
My neuropathy is hereditary, CMT, and progressive, much worse in the last six months, and my muscle loss is visible. I have never been able to do anything athletic, but I did hike extensively as long as there was limited elevation gain. We have been trying to get back to walking, just a couple miles around a lake nearby. On Monday we tried and I had to be partially carried to bed! I was unable to walk unassisted by the evening. Tuesday was rough but I was better by today and we tried again. Like you I take a Percocet before exercising because I know it will hurt.
The muscle loss is inexorable but can I slow it down, or strengthen the unaffected muscles by walking or am I just injuring myself more? I love being outside and my husband feels the psychological benefit is real even if I am not gaining anything physically. But am I hurting myself? I have not been able to figure that one out.
Do you find that there are other benefits to walking? Does it help your mood as it does mine? I don't see how I will be able to stand up and cook dinner the way my legs feel now, but I still think it was worth it. If I knew it was accelerating my disability long term I wouldn't want to risk it.

My feet burn and turn red after I exercise but it is worth it.

Check out this post where we talked about this before:

http://neurotalk.psychcentral.com/sh...light=exercise

You could be exacerbating CMT by overdoing - your walking. But it would help keep your healthy muscles (those not affected by CMT) going. It's a fine line. No pain, no gain is not for a CMTer. You cannot slow the progression of CMT down in the diseased muscles.

Yes it does improve my mood. I am not walking outside right now. It's a little to cold for me. Even on the treadmill it still makes me feel happier. It also makes me feel like I am accomplishing something.

I also do not want it to accelerate my disability. I did ask the doctor about it and he said it should be OK.

We'll see

Those are the kind of answers doctors always give! They assume exercise is always good, but honestly, as Kitt pointed out, it isn't that easy!

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.

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".

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

A CMTer has to be very observant when it comes to any weight lifting. Just the way we are. Not that you can't do it you just have to be careful. No pain, no gain is not for CMTers.