I've recently been diagnosed with PN; my version is so far limited to my feet. I have some numbness and a little burning now and then, but I count myself truly lucky when I read what others suffer with!

I'm 55, have always hiked and backpacked, and would like to keep doing these things for the next 10 or 15 years (of course!)

I'm trying several things:

1. I've stepped up (no pun intended) exercises involving my feet and lower legs -- heel and toe lifts, sideways lunges, knee bends, a kind of heel-and-toe sideways walk.

2. I massage my feet vigorously in the evening, hoping to increase blood flow and keep the tissues (and nerves) as healthy as possible. I'll start soaking them in warm epsom-salt water as soon as I get a basin...

3. When I have to sit I fidget. Tap my feet, wriggle them, stomp on the floor a bit. So far my workmates have not said anything ...

Sitting seems to be the worst for me. I drive for 6 hours (two 3-hour stretches) about every other week, and sometimes at the end of that my feet burn worse than usual. So, again, I'm trying to stay on cruise control and fidget around, tho' one must stay ready to hit the brake as needed.

What do other people do? What seems to help the most?

Hi Don,

You might try 100 mg. R-Lipoic Acid and 500 mg. Pantothenic Acid (vitamin B5) every morning for the burning pain; it virtually eliminated mine.

I have some other chronic pain issues that further complicate exercise, but I walk when I can, and have begun doing either a Tai Chi or gentle stretching routine (depending on... things) as many times a week as I can stand.

Everything (exercise) you're doing sounds great as long as you don't experience any deleterious repercussions.

Doc

I move my feet all day long and when in bed too.

Drives hubby crazy in fact. I think the movement helps keep things working.

Too much and there can be pain however. I had a very bad experience with one resistance machine at the gym...the one with the foot base plate you move against to strengthen the calves.(it is sort of like the antique sewing machines that were made before electricity, they were foot pedal driven). I had foot pain for 2 weeks after that one 15 minute session!

I found that elliptical machines were easier on my feet than the treadmill.

So just be careful and take it slowly, and wear shoes that do not compress the tops of your feet. That is where most of the nerves to the toes are, and tying too tightly can make your feet go numb, when exercising.

That's good information -- I didn't know that. It sounds like my work shoes are headed for the trash, as they lace pretty tightly! I'm due for some new ones anyway.

Thanks for the welcome, Dr. Smith. I'll probably take your advice and start R-lipoic acid; I'm already taking acetyl-L-carnitine. But I've not seen a neurologist yet, and my GP didn't make any recommendations...should I wait? Then again, I think both the ALCAR and RLA are pretty much can't-hurt-you supplements when taken in reasonable dosages?

Has anyone been given an exercise regime by a physical therapist?

My mother has had PN for 9 years, though it was diagnosed only after she experienced foot drop. Her motor control below the knee is poor, her ankles buckle, and she uses a walker. Only recently did a PT give her exercises -- toe raises.

I hiked on the White Rabbit trail in Ashland last weekend (there was fresh snow). My feet feel good after hiking, which is a relief. Maybe it's the workout on uneven surfaces, foot flexing, and lots of blood flow? Anyway, I'm glad my favorite exercise feels beneficial rather than damaging!

This is a great forum. I've found out more here than on any other PN website I've visited. Thanks for all this!

I have to lace my shoes in a different way...to take the pressure off my insteps. I have very high insteps making it difficult to wear lace up shoes...and my left has a surgical scar there besides, which is problematic. The years long numbness from that surgery has worn off finally and now I can get pain there.
I buy athletic shoes with thick tongues to pad the area too.

This link is very good for foot problems and shows an alternative lacing pattern for compressive issues:

http://www.northcoastfootcare.com/pa...echniques.html

Look around that site...it is very very helpful.

PNs with motor involvement suggest hereditary or CIDP.

Lipoic acid is often added to mitochondrial support nutrients. Dr. Ames'
product Juvenon has it, for example.

Use the R-lipoic stabilized form, for best results. It may lower blood sugar for some patients, so if you use insulin or oral drugs for diabetes, be careful and test often. 100mg is often all one needs.

I don't know of any reason to wait. My neurologist had no objections. I've read (but cannot find the article; perhaps mrsD knows which one) that the sooner RLA is started, the more efficacious it is. The B5 helps considerably too, even though I am not diabetic. I haven't needed/taken anything further (like gabapentin) since beginning RLA & B5.
http://www.diabeteslibrary.org/View....ntothenic_acid

Doc

Thanks again to both Mrs. D and Dr. (not-a-real-doctor) Smith.

That part about the CIDP worries me a bit. I read that it's often apparent in early adulthood, and Mom was 78 when she noticed the symptoms. She's 87 now, and while the disease has progressed it hasn't affected her autonomous nervous system or anything much above her knees.

She's otherwise vigorous for her age...but then, she's a smart woman with a lot of determination, and I'm not sure how much discomfort she's simply decided not to mention.

Maybe I'm rationalizing (because I'm worried, of course).

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I poked around a bit on the Internets just now. Here are some PN-specific exercise stuff I found:

From another site:

OK. Fine, but pretty general.

It looks like common-sense stuff: keep mobility in the lower legs by doing foot exercises, avoid high-impact stuff, work the large muscles by doing strength and aerobic training.

I like it when recommendations make good sense...

Yes, exercise is important. But if you do go to a gym with machines, use very light weight at first.

I'll NEVER use that foot resistance one again... I did it very gently and man.... did my feet HURT.

Also for older patients, our tendons get stiff, and are easy to strain. It is seductive to use heavy weight resistance, and I did that when I was going regularly, and I hurt my left hip tendons eventually. Keep the resistance low, and do many reps...that is just as good. I think I was using the high weights for stress management...it was a huge mistake for me.

Yes! I have hand dumbbells from 5 to 20 lbs, and for the various exercises I choose the weight so I can do 10 to 30 reps. It seems best for me if I don't strain to do the maximum weight possible.

It's seemed to me that walking for an hour or two on sidewalks makes my legs and lower back tired and achy, while walking on trails feels much better -- even if I hike for hours. I think maybe it's because walking on pavement is repetitive, with each step nearly the same and the foot-strike unforgiving, while the rough trails I like have a variety of slopes and footing so that the legs and feet have to flex a little differently with each step.

Then again, maybe it's psychological -- I just feel energized by getting out in the forest.

But if people find that walking on sidewalks hurts, it might be worthwhile to try ambling along a dirt or sawdust path instead.

Pets are great -- my mother has a cairn terrier and her little dog is what gets her out with her walker every day. She goes 4 or 5 blocks and back. My old dog -- he's a labrador mix -- has gotten so slow and sniffy that we spend 15 minutes walking to the park and back. He sniffs every bush and power pole, sometimes with deep interest and concentration. Maybe for him it's like reading great poetry...but it sure makes for a slow walk.

All the best to everyone this weekend!

You know our black cat who just turned 1 yr old....this month, sniffs everything like a dog! None of our other cats have done this. And our new kitten watches her with ????? in his eyes!

Outside she sniffs the ground and bushes, etc.

I know dogs do this... to see what's going on, I suppose.