Exercise for PN
 

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 ... :rolleyes:

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, :welcome_sign:

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. :D

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).

----------

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. ;)

AFAIK, it's the high(er) impact of the concrete (similar to standing an a hard concrete floor vs. a rubber pad)

At the local park where we walk ours, there's a large boulder at the intersection of 4 major (and some minor) paths. Every dog who goes by "uses" and reads it; it's been dubbed, "Peein' Rock" by local owners (& dogs?)

Dogs are marking territory, and reading sign. It's more like a public bulletin board than poetry, given the information they can glean about their ilk from an olfactory reading - they can identify the individual dogs, their sex, general health, stage of estrous cycle/pregnancy, fear, pack order, and a lot more. Since dogs smell in layers (vs. blends) they can keep all this straight about each individual dog.

They're just keeping up with the local "news". :rolleyes:

Doc

Well, maybe it's dog poetry, Doc S?

Like, maybe the Irish setter down the street would write this poem:

Where to go? I thought it fine
beside the scented pine,
upon redolent roots among the stones,
and pitchy cones...
But no, anent
along the path I went,
admired the dogwood and its bark,
and crossed the park
to watch a squirrel on the fence.
And then, since
time is not eternal for a dog
behind a fallen log
where the maple drops it wingéd seed
I peed.

:D :rolleyes:

I don't know for sure if doing foot exercises and massage are helping, but it seems there's less numbness lately. Could be just normal variation in the syndrome, it could be placebo effect (I feel better when I think I can do something about my condition)...or maybe the old feets really are responding.

Got a copy of my bloodwork today, everything indicates horse-like healthiness.

Did I just get set up? :Hum:

IMO, if you feel better, or better about it, it's helping.

Back when I first joined NT (or thereabouts) and hadn't a clue (as if I've got one now) my DW was massaging one foot every morning for 10-20 min (leaving the other alone as a control) to see if it would be therapeutic. It seemed to make a slight difference, but nothing epiphanic, and after we stopped, things seemed to even out again. I think I've experienced more improvement from some of the supplements, though it's hard to gage because progress is so slow. Then again... who'd turn down a foot massage? [insert smilie here]

Doc

Doc

elizabeth
 

I am so glad i read your post as right now being newly diagnosed mine is in myt feet and lower legs so reading about it bothering you when you sit , that is my worst time . I' think if i can stand and walk all the time I"m far bette off. I'm trying to learn as much as possible . I was hoping that they would find a cause but after lots of test mine seems to be idiopathic right now . Thanks

I used to walk 5 miles a day before my diagnosis of neuropathy. When I asked my first neurologist what activities/exercises will avoid future damage in my nerves and preserve all the healthy ones. He told me emphatically that there is no activities nor exercise that can damage the nerves. Is t his true?

When I can, I walk very briefly - like 800 steps (I count my steps now because I am wearing a pedometer). I do the stationary bicycle for 30 mins. I put soft paddings on the pedals to (at least) reduce the pain. Its walking and standing that I cannot tolerate - maybe its because putting the weight on the feet makes it untolerable.

Thank you.

Update
 

Lately, as Forrest Gump might say, "for no particular reason," I've got significant edema in my feet again. This seems to come and go for weeks at a time, and I haven't been able to put my finger on the reason why (though I can sure put my finger on the edema, and the impression stays right there... :( ) I do have noticable pain/sensitivity along with it.

Foot massages (or more aptly, pressing the fluids out) helps a good bit with this pain/sensitivity, (not to mention making my slippers fit more loosely) albeit temporarily. I'm hoping that keeping it up will prevent/retard any permanent damage, and can't wait until it goes away again...

Doc

Doc,
 

Unfortunatly, about three years ago, after bladder surgery, I developed edema. I have been on 40mg Furosemide and 25mg Spironalactone for a couple of years just to keep the swelling down.

After the surgery, the doctor put me on the antibiotic Levaquin 500 mg's for 14 days. My PN worsened, as well as the Edema started within a week or two after surgery. Also, Statis Dermatatis of the feet,ankles, legs to the knees started shortly afterwards as well. All after the surgery/Levaquin. To say the least; this has really added to the burning pain in the feet/ankles and leg pain.

At first, I had to keep changing shoes and slippers sizes. Since being on the meds for edema, I have maintained the same size although, I still get some swelling in my left leg at times.

Ger