[pinehurstcharlie]

I'm trying to find the right fit , what helps and what I dont' pay for afterwards for a long time . I've ruled out the treadmill and working on a few other machines to keep or rule out . Last night I went to water jogging and I didn't feel the burn as much when i got home nor into the night . So I"m wondering if anyone else has found different exercises that really help the burn and what they might be . I know it is trial and error plus then it will all change but still would love to know how others are doiing with exercise as I"m so new to this, I use to exercise more befoer the pain and now feel i need to go back to it that I"ve been diagnosed.

[grete]

Originally Posted by pinehurstcharlie

I'm trying to find the right fit , what helps and what I dont' pay for afterwards for a long time . I've ruled out the treadmill and working on a few other machines to keep or rule out . Last night I went to water jogging and I didn't feel the burn as much when i got home nor into the night . So I"m wondering if anyone else has found different exercises that really help the burn and what they might be . I know it is trial and error plus then it will all change but still would love to know how others are doiing with exercise as I"m so new to this, I use to exercise more befoer the pain and now feel i need to go back to it that I"ve been diagnosed.

I have alway been fit and active, but for the last year I've had severe PN in both feet (from cancer). I have found that exercises relieve the PN pain both while I'm doing the exercises and for a few hours afterwards. I think two things happen:

1) Endorphines are released
2) Blood circulation increases and relieves som of the nerve pain (I would like to know why that is)

I have found swimming, kayaking, careful bicycling, chair excercises, sit-ups, push-ups etc. to be wonderful. The PN pain almost disappears as long as I keep exercising. I can't walk much and can't wear shoes so all my exercises are aimed at not putting weight or pressure on my feet. I believe a TENS machine (electric current from a so-called Transcutaneous electrical nerve stimulation) does the same thing. However, it seems as if the TENS machine is only useful as long as it's on and working. As soon as you stop using the machine - the pain comes back.

Regards,
Grete

[Don_S]

Grete writes:

1) Endorphines are released
2) Blood circulation increases and relieves som of the nerve pain (I would like to know why that is)

I think the endorphine hypothesis is probably correct for everyone, and the circulation hypothesis is correct for many people (including me). In a few people I suspect stimulation, including increased blood flow, may trigger parathesia -- those would be the people who experience stabs of pain when walking, for instance.

So far my PN involves only numbness (and some mild burning if I am too inactive) so I'm very lucky.

I'm able to do foot-intensive exercises like jogging and elliptical steppers, and both seem to help. The best, though, is a long hike over steep, uneven surfaces, so my feet flex and push every which way.

I realize not everyone with PN can do these activities, though.

Other than that, toe-raises seem especially useful. I think they strengthen the muscles which stabilize the lower leg, and help with balance. Sometimes I sit and rotate my ankles -- that is, hold my lower leg still and flex my ankle so that my toes move in a circle.

Massaging my feet seems to help too. I rub hard, from heel to toes, and across the top of my foot. I twist the ball of my foot back and forth to flex the metatarsals as well. If I have the time I spend a half an hour doing first one foot and then the other.

My mother's PN has left her unable to control her ankles or feet. She wears special shoes and uses a walker, and she goes 10 blocks a day for exercise. She's 88 years old, and a constant inspiration to me... For her, the exercise may not directly affect her PN. I suspect, though, that it helps her think of herself as a healthy person. She's not a sick, crippled old woman; she's a fundamentally healthy, strong woman who has a problem with her feet. Big difference.

There was an excellent article in The New Yorker, December 12 2011 (see here) on the placebo effect. Since what people believe about a treatment or therapy can make a huge difference in how effective the treatment is, it seems to me that one can use belief to one's benefit in managing something like peripheral neuropathy.

For instance, many studies have shown that exercise is good for humans. It may or may not actually help PN -- but if I believe it helps my PN then I'm getting placebo benefits on top of the scientifically proven general health benefits.

It seems the same for diet...studies show that omega-3 oils from fish reduce inflammation and have health benefits. They may or may not specifically help PN, but if I believe they do then my PN symptoms may in fact ease, and in any case I gain anti-inflammatory benefits by eating fish.

So maybe if something is known to have health benefits, and if it does not adversely affect our PN, then it's actually constructive to think that it may be helping.

Not sure if that makes sense, but what the heck.

[pinehurstcharlie]

Originally Posted by Don_S

Grete writes:


I think the endorphine hypothesis is probably correct for everyone, and the circulation hypothesis is correct for many people (including me). In a few people I suspect stimulation, including increased blood flow, may trigger parathesia -- those would be the people who experience stabs of pain when walking, for instance.

So far my PN involves only numbness (and some mild burning if I am too inactive) so I'm very lucky.

I'm able to do foot-intensive exercises like jogging and elliptical steppers, and both seem to help. The best, though, is a long hike over steep, uneven surfaces, so my feet flex and push every which way.

I realize not everyone with PN can do these activities, though.

Other than that, toe-raises seem especially useful. I think they strengthen the muscles which stabilize the lower leg, and help with balance. Sometimes I sit and rotate my ankles -- that is, hold my lower leg still and flex my ankle so that my toes move in a circle.

Massaging my feet seems to help too. I rub hard, from heel to toes, and across the top of my foot. I twist the ball of my foot back and forth to flex the metatarsals as well. If I have the time I spend a half an hour doing first one foot and then the other.

My mother's PN has left her unable to control her ankles or feet. She wears special shoes and uses a walker, and she goes 10 blocks a day for exercise. She's 88 years old, and a constant inspiration to me... For her, the exercise may not directly affect her PN. I suspect, though, that it helps her think of herself as a healthy person. She's not a sick, crippled old woman; she's a fundamentally healthy, strong woman who has a problem with her feet. Big difference.

There was an excellent article in The New Yorker, December 12 2011 (see here) on the placebo effect. Since what people believe about a treatment or therapy can make a huge difference in how effective the treatment is, it seems to me that one can use belief to one's benefit in managing something like peripheral neuropathy.

For instance, many studies have shown that exercise is good for humans. It may or may not actually help PN -- but if I believe it helps my PN then I'm getting placebo benefits on top of the scientifically proven general health benefits.

It seems the same for diet...studies show that omega-3 oils from fish reduce inflammation and have health benefits. They may or may not specifically help PN, but if I believe they do then my PN symptoms may in fact ease, and in any case I gain anti-inflammatory benefits by eating fish.

So maybe if something is known to have health benefits, and if it does not adversely affect our PN, then it's actually constructive to think that it may be helping.

Not sure if that makes sense, but what the heck.

Thanks so much you have given me some really good ideas and things to try.

[pinehurstcharlie]

Originally Posted by grete

I have alway been fit and active, but for the last year I've had severe PN in both feet (from cancer). I have found that exercises relieve the PN pain both while I'm doing the exercises and for a few hours afterwards. I think two things happen:

1) Endorphines are released
2) Blood circulation increases and relieves som of the nerve pain (I would like to know why that is)

I have found swimming, kayaking, careful bicycling, chair excercises, sit-ups, push-ups etc. to be wonderful. The PN pain almost disappears as long as I keep exercising. I can't walk much and can't wear shoes so all my exercises are aimed at not putting weight or pressure on my feet. I believe a TENS machine (electric current from a so-called Transcutaneous electrical nerve stimulation) does the same thing. However, it seems as if the TENS machine is only useful as long as it's on and working. As soon as you stop using the machine - the pain comes back.

Regards,
Grete

I see that the swimming is going to be my best so far and I"m still going to try the tai chi plus keep doing different machines to find a good combo

[Dr. Smith]

With me, PN is just one of several comorbid issues, and most exercise exacerbates all kinds of pain. I started Tai Chi late last year; it's very low impact and easily tailored for what ails ya.... One of my resolutions is to do it more seriously/regularly this year; we went through a dozen videos and when we finally found the perfect one for us, we couldn't get a copy that would play on our machine!

Doc

[glenntaj]

--as I haven't seen any well-designed studies, even correlational ones, addressing it, my sense over the years from many conversations, e-mails, support group meetings, conventions, etc., is that exercise to tolerance tends to improve people who have neuropathy that consists of only or primarily sensory symptoms. These people often have primarily small-fiber syndromes (the small, unmyelinated fibers have only sensory or in some cases autonomic functions) and often ischemic factors, or circulatory factors, are part of the syndrome (as it often is, for example, with diabetics); anything that improves circulation, as exercise certainly does, tends to help move nutrients/oxygen into the nerves and waste products out, and may help symptoms and even healing. I suspect massage and physical therapy may help many such people for similar reasons.

People with motor predominant symptoms, though, tend to to show much less response to exercise--for one thing, when motor potentials are affected, it's much harder to DO voluntary exercise--one may not have the proper pathways to command voluntary muscular action to the complete extent that "normal" people do--and the increased demand on the nerves and muscles is often very fatiguing. For these people, exercise may set up abnormal signalling that results in cramps, spasms, etc.

I understand that many in the MS community report a similar thing--exercise seems to be more symptom relieving/stilling when one has merely sensory symptoms.

This is not to say that exercise might not be having other systemic benefits in even those with compromised motor pathways, but it seems much harder to tolerate exercise in that situation.

[grete]

Originally Posted by glenntaj

--as I haven't seen any well-designed studies, even correlational ones, addressing it, my sense over the years from many conversations, e-mails, support group meetings, conventions, etc., is that exercise to tolerance tends to improve people who have neuropathy that consists of only or primarily sensory symptoms. These people often have primarily small-fiber syndromes (the small, unmyelinated fibers have only sensory or in some cases autonomic functions) and often ischemic factors, or circulatory factors, are part of the syndrome (as it often is, for example, with diabetics); anything that improves circulation, as exercise certainly does, tends to help move nutrients/oxygen into the nerves and waste products out, and may help symptoms and even healing. I suspect massage and physical therapy may help many such people for similar reasons.

People with motor predominant symptoms, though, tend to to show much less response to exercise--for one thing, when motor potentials are affected, it's much harder to DO voluntary exercise--one may not have the proper pathways to command voluntary muscular action to the complete extent that "normal" people do--and the increased demand on the nerves and muscles is often very fatiguing. For these people, exercise may set up abnormal signalling that results in cramps, spasms, etc.

I understand that many in the MS community report a similar thing--exercise seems to be more symptom relieving/stilling when one has merely sensory symptoms.

This is not to say that exercise might not be having other systemic benefits in even those with compromised motor pathways, but it seems much harder to tolerate exercise in that situation.

You might have noticed that I posted the first reply to this exercise question.Thank you for your interesting and informative reply. I would really like to understand in what way exercise helps PN (in my case small fiber neuropathy in both feet from cancer) so could you please clarify a couple of issues:

1) You say, "exercise to tolerance tends to improve ...". I wholehartedely agree. I assume you mean exercise to tolerance with e.g swimming for people who can't walk etc. I gather you don't mean exercise on your feet to tolerance e.g. running - if your feet get so sore and painful that you're in agony for days after your jog (?)

2) A. You say, "anything that improves circulation, as exercise certainly does, tends to help move nutrients/oxygen into the nerves". I would be very interested to learn how and why this happens. Would you be able to give me a link or reference to a study/paper which explains this? B. Would a TENS machine also improve circulation and move nutrients or is it only fysical exercise that does the trick?

Thank you.

Regards,
Grete Cooper

[mrsD]

I believe one of the biological mechanisms of exercise induced circulation benefits is release of nitric oxide at the vascular level. The body signals this when it needs better blood flow.

Chemo damage is mostly at the cellular level...the mitochondria of cells which make energy. If the mitochondria of the blood vessels are damaged, they may not respond to exercise the same way non-chemo patients may.

But the general benefits of moderate regular exercise are well known to improve health, and control blood sugar, and improve circulation.

Originally Posted by grete

You might have noticed that I posted the first reply to this exercise question.Thank you for your interesting and informative reply. I would really like to understand in what way exercise helps PN (in my case small fiber neuropathy in both feet from cancer) so could you please clarify a couple of issues:

1) You say, "exercise to tolerance tends to improve ...". I wholehartedely agree. I assume you mean exercise to tolerance with e.g swimming for people who can't walk etc. I gather you don't mean exercise on your feet to tolerance e.g. running - if your feet get so sore and painful that you're in agony for days after your jog (?)

2) A. You say, "anything that improves circulation, as exercise certainly does, tends to help move nutrients/oxygen into the nerves". I would be very interested to learn how and why this happens. Would you be able to give me a link or reference to a study/paper which explains this? B. Would a TENS machine also improve circulation and move nutrients or is it only fysical exercise that does the trick?

Thank you.

Regards,
Grete Cooper

[glenntaj]

--about improvements in nerve function from exercise, or from certain supplements, do focus on the nitric oxide connection Mrs. D mentions, in that nitric oxide has a vasodilating effect.

One of the best places to read about this are in the papers of Dr. Aaron Vinik, who is one of the world's leading researchers into diabetic neuropathy, especially small-fiber versions, and who has described the nitric oxide pathways numerous times. I still have one linked in the Useful Website "Stickies" at the top of the board, I believe, and here's a very technical one that talks about it from the viewpoint of skin perfusion:


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3047977/


Here's another that gets into why increased ischemic flow is important for healing/nutrifying, and why exercise is important for that (and why diabetics have problems with blood flow):

http://care.diabetesjournals.org/content/26/6/1883.full


And here's a HUGE overview associated with Endotext, a series of on-line endocrinology texts:

http://diabetesmanager.pbworks.com/w...20Neuropathies