I stand up paddle surf, in the surf (ie, in waves, not flatwater), almost every day, for 2 hrs at a time, if not a little more. The Dr does not want me to do this, and I suspect I know why: at the end of those two hrs, I go straight to bed and/or mope around the house the rest of the day, too exhausted to move.
But, it's how I choose to deal with my disease. Surfing is what makes me happy -- and happy beyond words -- so why would I want to cut down on it, knowing that my disease is going to make me stop at some point anyway?
And, yes, there are times, usually at the end of the day, when my feet are burning to high hell and are prickly numb like no one's business and I swear that I'll take it easy and not surf the next day. But then the next day arrives, my feet seem somewhat better, so off I go, without fail, to catch waves.

(Here is a story I wrote about my case of CIDP and addiction to surfing: http://www.outsideonline.com/1922561...ithout-feeling )

One thing surfing has not done is increase my muscle mass. Due to CIDP, my leg muscles are almost entirely atrophied and my arms are skinny as toothpicks. That said, I have to feel that without surfing I might be even worse off than I am.

So, those are my thoughts, for what they're worth.

This is somewhat the way I feel. I loved to hike and walking in the woods makes me happy so I try to do as much as I can. I know I won't be doing it much longer. At the end of a walk my husband has to lift my feet into the car.
It is basically impossible to increase muscle mass with the disorders that cause atrophy. Mine is hereditary. Exercise may slow the rate of progression down a little

No one here is saying that you shouldn't exercise if it causes no ill effects, just that it may not be the panacea that it has come to be regarded as by doctors and the popular press.

Awesome story!! Glad you are getting out there.

Welcome LMPinkereton.

Exercise always makes mine worse too. If I exercise a little, I experience a mild flare-up but if I push myself at all, my body attacks me and it takes days to recover. I do 15 minute "workouts" now, slow and easy and that's about the best I can do.

Hi all,

Nice to hear some of you getting out and still exercising! I will use you as inspiration in my neuro journey. My experience so far (10 weeks into this), has been difficult. I am a very active, otherwise healthy young (26) female. I am used to doing high impact exercising when I am committed to a exercise regime. As for now, it is very difficult to walk to my mailbox some days. I have tried slow, steady walking and notice that I must walk short distances. I have done one mile since this ordeal and came home physically DONE, mentally, not so much but my body will not allow me to go further. My calves CRAMP badly, my legs feel stiff, it seems my circulation decreases, and my heart rate feels through the roof. And yes, I feel that it absolutely triggers my sensory and muscular symptoms. My feet and hands certainly burn that night and the legs cramping and muscle twitches are intense at night. Last week, I was determined to incorporate exercise back into my life and started "beginner yoga". Ten mins in I had to stop. My hands and arms were burning and hands and feet swollen. I did yoga three more times with similar results and called it quits, at least for now and until I see a neurologist. I just don't feel confident or comfortable exercising at this time. Hoping I can see a physical therapist or my doctor will give me insight so I can get back at it. EXERCISE IS MY THERAPY and stress reducer!!

EXERCISing is one of those things that can make neuropathy worst, because your constantly putting your nerves under stress,oxidative and physical stress.

I was really into weight training but I noticed it aggravated my symptoms, or maybe just a coincidence. But i've been too paranoid to work out again so its been 3 weeks now. I might try some light weights starting next week.

EXERCISE IS MY THERAPY as well! My suggestions:
1) Check your shoes (not in yoga obviously). Wear them around the house and see if they trigger anything. My sneakers because of the roughness of the sole effected me. I also can not wear socks in my sneakers (sometimes if I turn them inside out so the smooth side is next to my feet it works.) I had tried dance class and I realized weeks after I had given it up that my shoes were the culprit. Exact same symptoms you are describing. It's still is a challenge to take the class, but nowhere like it had been with those sneakers.
2) Yoga was horrible for me as I have spinal issues and a cyst in my hip that were being inflamed by the weight bearing poses (warrior, back extension poses, etc.) I went to a muscular skeleton Dr who ordered various tests and I now know yoga is not for me and I also know what to avoid.

My neurologist told me it is ok if exercise triggers symptoms as long as it doesn't extend to the next day. I don't know if it applies to the general population or if it was just in my case but I've read similar things on this forum.

While I have trouble walking I have places on my feet that are pain free for the most part. I use that part to ride my bike. I get in a couple of miles up and down hill at dawn when no one is about. It's the only time I get to be in some kind of natural setting now. For someone who spent his life fishing and hiking it's weird to say the least. But for now....