Exercise: Pros & Cons
 

I have been doing 3 to 5 miles on my treadmill since having my pn but as it gets progressively worse, I find myself avoiding more and more. So, in light of that, I have noticed a few things:

Cons:
It HURTS.
I mean, I know I am going to be in a burn flare after I take those shoes off. It does not hurt while I am doing it but I know I am gonna pay.

Gain weight when I don't do any.

Not healthy to avoid it.

Pros:

Healthy

Mentally it gives me that seratonin boost afterwards that I love, even though I HATE doing it and will never be a person who loves to do it.

Helps to lose or maintain weight.

Literally changes my entire day when I do it.

And last....and what I just found out, since I avoided it for 2 weeks completely....I believe it helps my PN. I am guessing it brings great amount of blood flow to my toes and thus on the days I exercise, my pn is better and my nightly horror is less severe.

That last one is newly discovered...and enough to drive my butt out of the chair and put on those horrid tennis shoes.


Just thought I would share.

This sounds so enticing. I used to love treadmill, etc., before PN. But I apparently have sensorimotor, axonal PN, and when I walk for even five minutes, my knees get stiff and painful and WEAK, and they stay that way for days. So it's hard to believe that the effect is beneficial. Anyone else have this experience?

I am not able to walk on a treadmill at all, my balance and coordination are too poor. My podiatrist spent 30 minutes trying to adjust it so he could do a gait analysis, to no avail.
I am able to walk and even do moderate hiking though. I find asphalt and cement increase the pain in my legs later, but walking in the woods on soft ground does not. I am on heavy pain meds, or I could not do it, but my pain levels are definitely lower when I walk, and as mentioned, the benefits go far beyond the effort involved. Mood improvement and a sense of accomplishment being two big ones. Even if I am useless the rest of the day the walk is a highlight. I actually am training a German shepherd puppy to be my walking buddy. I have a waist leash for her since I walk with two poles. My husband is usually with me, but I wanted her along especially for those days when he can't come. I have these visions of her rescuing me if I fall by getting a ranger....everyone needs a little fantasy, right?
I know not everyone can do it but it is really great if you can. I have small and large fiber neuropathy with muscle loss- CMT. Most of my pain is not in the feet, although I have that as well, but in my legs, seeming to come from the bones but more likely related to the muscle weakness. I was a big, strong, woman, 6'2", so have been able to keep moving at least for now. Steps are getting to be too much, though.

I find when my PN is too bad or I have too much pain, doing ANY form of exercise is still better than nothing.

I will use the stationary bike, since it requires no balance and no weight bearing on my legs, less pressure on my feet. I do like to do something that requires those dreaded tennis shoes because as I am finding out, forcing blood circulation to my toes seems to have a positive impact on my feet so that the flares during the night are LESS SEVERE.

I will also simply lift weights if I refuse to actually walk/ride bikes. It doesn't help the night flares much however it still gives me that positive energy boost/serotonin boost that simply makes me feel better mentally.


It is surprising to hear myself saying this. I have been overweight for the last 20 years. I hate exercise. My thyroid issues not withstanding, I simply never had the energy, or where with all to keep pursuing it. However, getting SOME energy back after dealing with thyroid pushed me to try to keep going and having lost 60 pds has motivated me to do it. But....my health, energy, and pain has taken over in the last month and I have almost stopped exercising completely in the last weeks.

It was learning that it helps my pn at night that gives me strength to push on even when want to quit now. I remind myself that 1 hour of exercise may give me a good nights sleep...or a better night.

Happy exercising. :)

(i know, don't you wanna punch me in the face? lol )

Chaucerfan

When I was having joint pain I signed up to do a water exercise class in the pool. It really works but no pain to the joint.

Maybe that is an option for you.

I did feel like a fish outta water...pun intended lol, as it was mostly old folks in the class...but I met great people. That is why older folks exercise in water, less pain.

Thanks, Stacy. I used to do lap swimming, and I'd see all the "older folks" doing water walking in another lane. Now I'll be one of them.... But your recommendation is timely because I'm even now waiting for the arrival of a bathing suit that I ordered last week on line. So I'm hopeful!

I am 100% for a regular exercise. Exercise serves my mood, lungs and PN. even when PN is painful, I still try to walk and when pain is worse, I do the stationary bicycle because it has less pressure on my feet and legs. During those "normal" pain level days, the pain disappears while walking, but once you stop walking and just standing, you will curse your neighbor.lol. I don't know why is the pain becomes tolerable while walking and becomes intolerable while just standing ??? I remember one poster wrote that just thinking of standing in line makes his blood pressure go up.

There are days though that I really cannot walk. During those days, I try to lift weights. But this hurts my osteoarthritis in my fingers. Oh well, don't ask me if there is any part of my body that does not hurt....lol.

I wish I knew why movement like walking or running makes my PN better. If I even think about standing in a line it does make my blood pressure does go up. I too have the flare ups as soon as I stop running and take the shoes off. Sometimes this can last for the whole day but the advantages makes it worth it. I feel better, much more able to deal with the bad days, helps with my weight and my attitude about myself. Now I have chronic hip bursitis so I'm weight lifting and riding a stationary bike. Not as good though.

I too swear it's blood flow but I don't have a clue if that's it. All I know is if I'm paper thin and run about 20 miles a week I'm so much better off. I haven't been able to say I'm there for 2 years though. Weight gain and limited exercise are the culprits.

Marty, I agree!!!!

My PN is soooo much better this week and I have not gotten to exercise due to company visiting, but I am using my chi machine and it really must be working.

Marty, I too, can not stand in line, it's AWFUL. Even exercise is easier than just standing. And WHY does shopping in a mall make things WAY worse than an hour of full on exercise?????? So weird.

Marty, seeing how long you've had PN, I assume you've already tried a cortisone injection for the hip bursitis? After reading in "Listen to Your Pain" that the only--but also very successful--remedy for trochanteric bursitis is corticosteroid directly into the bursa, I asked my orthopedist to try that, and so far its taken care of THAT particular issue for four or five months. (Now I wish I could tame the patella pain, from arthritis or who knows what. Before PN I was active enough to overcome that. Now it's keeping me FROM being very active again. Sigh.) BTW, I agree with you and Stacy that standing is much worse than walking. I wish I could get a "handicap placard" that would let me cut into line at the grocery check-out....

Sigh... I've had injections, didn't do a thing. But thanks for the advice/help anyway.

The only thing I can connect it to is the amount of standing done in the mall compared to the amount during exercise (or the amount of blood the pools in the feet and legs while at the mall verses the amount of blood the flows at a higher rate during exercise). I really really wonder if it's not somehow tied to our blood vascular system. (Not the cause of PN but relief)

This is something with PN that does not make sense to me. The pain becomes tolerable when you start walking but once I am done and starting to do simple tasks in the kitchen which requires standing, that I cannot do. BUT, during those days when pain is really bad, both standing and walking are out of the question.

Marty, I noticed you were diagnosed to be gluten sensitive in 2009 -- were your test results positive?

I AGREE!

standing in the kitchen to cook KILLS ME.

But I can walk 2 miles on the treadmill easier, less flare.

weird.

Yes but on the borderline. Other times it has come back negative too.

I think it's blood pooling and swelling.

There nerves in the feet have priorities in sending signals.

For example, cold has priority over heat. I would think that proprioception (involved in walking/movement) would have priority over temperature, or else you would fall. (and have injury).

So standing could be very different from walking etc which is constant movement and hence uses different nerves. The pain of sensory nerves is still there but being temporarily masked by the proprioception nerve priorities. People with severe PN eventually lose proprioceptive ability and don't know where their feet are, and at that point, wheelchairs are needed for the most part.

It makes sense about the blood pooling because when I just stand my toes swell also. Sometimes they will swell and turn red more than burn and hurt.

I dunno, it all stinks. :(

You know, even before getting PN I HATED walking in the mall. My feet always hurt more while shopping than when exercising.

People do not end up in wheelchairs just because they do not know where their feet are. Even those who wear AFO's and have no feeling in their feet. Some of those even drive which might be dicey unless they have hand controls. It doesn't have to be severe either before you don't know where your feet are. This condition is caused by many things - diseases or otherwise.

Proprioception: http://en.wikipedia.org/wiki/Proprioception

The ability to sense where your body parts are.

You don't know where parts of your body are especially in the dark. Police officers do sobriety checks like "walk the line". A good site.

Everyone is different and those who have not experienced the pain from standing in relation to PN have no Idea what you are talking about thanks goodness for them really. Anyway I have no idea why but my theory is that there is some kind of connection with blood flow. If the blood is not flowing and if it’s causing pressure, (at least it feels like pressure building) my PN is much, much worse. If I stay on an exercise regimen where I get the maximum blood flow over time it PN seems to improve.

PN for me never improves. Same with most other CMTers. Just keeps progressing, as it does, due to the hereditary factor.

My chi machine is fast becoming my best friend.

My mom has been visiting for the past week and I could not exercise and I have continued to use my chi machine twice daily and I am still have blissfully wonderful nights. Thank you Lord. All I can think is my chi machine is what is doing it. If I get a flare I can go use it in that moment and it will stop the flare farely quickly compared to not using it.

It MUST be a circulation thing, since that is the major thing a chi machine does.

I am sure circulation is key. I would use the Chi machine but I cannot lie flat or have that constant movement. I would love it if I could do it. :) I do use my infrared dome and pad though, great for circulation.

I have not been walking because of the PN pain. As I may have mentioned in my other post, the pain has slowly progressed. Anyway, I tried walking this morning and I painfully finished it. After I finished walking, I had to literally throw myself onto the sofa to rest my feet/legs. It was really horrible.

I completely understand what you mean with "....have not experienced the pain from standing in relation to PN have no idea what you are talking about....". The pain and the discomfort are very difficult to describe.

Hi Stacy
 

I have the same issues. I try to walk too, but know I am going to pay for it. I gain weight if I don't. Keep on going, and I will too. Tonight I will use a lidoderm patch in hopes it settles down. take care of yourself. ginnie:hug:

Here's another thought which is a touchy topic and has been discussed in great length but I have gained close to 15 pounds in the last year due to not being active enough. I have chronic Hip Bursitis and can't really do much at all right now. Anyway I' wondering if now my feet are fatter if that's added to my PN being much worse?,... Inflammation and pressure from the layer of fat? I'm thinking yes. It's so hard to be active and healthy when battling PN sometimes!

Any thoughts?

My pain specialist said that these patches are only useful for painful skin, as in on the surface, but not for deep nerve pain. I found that disappointing. He is not trying everything he can to help my burning :(

As for exercise I do vigorous work every day. I feel great when I'm doing it, and won't stop, however, I notice that on the weekends when not working, my pain lessens.
I'm only 30 and can't bear the thought of not walking, although the numbness in my lower legs and moderate/severe bil lateral carpel tunnel lead me to believe that I will have to accept that I won't be running myself into the ground for much longer.
The other week I was wearing tights under my dress and my ankles and calves turned purple .. so frightening. Has to be circulation related ..no?

Marty feet do gain weight just like the rest of our body, lol. True. I lost 60 pds last year and all my shoes got too big for me.

I can't help but think it would make pn worse, since added weight makes everything else worse but thats just me guessing.

Silver, I dunno but that sounds scary, anytime it turns purple!! I know my chi machine is my new best friend now and its all about circulation.

Lidoderms do penetrate.... any doctor who says no is in error.

http://dailymed.nlm.nih.gov/dailymed...archiveid=3663

I suspect doctors lie when they don't know much about a product and therefore are afraid to prescribe it.

The pain of post herpetic neuralgia is deep and not superficial only in the skin.

My PN symptoms were preceded by peripheral edema in my feet by about a year. At first I wondered if the edema was the cause, as there is mention of that on the Wiki page for PE, but neuros discounted that—said edema was not severe enough to cause PN.

Whenever my feet are "fat", everything hurts more. Keeping them down (for me) is a matter of diet & exercise (walking). It hurts while I'm walking—short term they swell up & feel "tenderized", but shrink down the next day. YMMV.

Doc

Marty,

I dont have an answer to your concern but what I can say is I completely understand your sentiment of wanting to be healthy but with PN pain, this seems to be a challenge if not outright difficult. In my case, I NEED to exercise for my lungs. When i walk, my breathing is better but if i just sit down and not move around, i feel lousy and my breathing is difficult. Another reason why i need to exercise is my elevated sugar issue. As we all know, exercise and diet is good to those with sugar problems.

Edema preceding PN
 

Thanks for mentioning your edema. My PN was also preceded by pretty bad edema in my feet (probably from immobility after a knee fracture). The PN symptoms started maybe four days later. The swelling lasted only about six weeks. I can't imagine it CAUSED the neuropathy (especially since the PN started in my hands/arms a couple of months later). But the coincidence was strange, and I've been wondering if anybody else experienced it. I even searched the forum for mentions but didn't find any.

FWIW, my docs have told me it's not uncommon to have both.

Doc

Thanks. Do they say or imply that there's any connection--that it's not just coincidental?

They don't know. Chief of Neurology told me, "We just don't know everything." I knew that, but I thought/hoped they might know more than they do. :Dunno:

Doc

Sometimes it is a lot better if they don't pretend to know more than they do. I was devastated when my neurologist fired me because CMT is progressive, there is NO treatment, and she doesn't do pain management, but I have since heard horror stories of multiple failed surgeries, therapies, etc. where the doctors wouldn't admit their limitations.
I have since come to appreciate her honestly and to question why some people with this condition have a whole team of specialists they see and presumably pay each year...

Honest doctors
 

Susanne,
Once again your courage is an inspiration. On some level I know that that the specialist I'm seeing next month (to diagnose my idiopathic PN) may not have any treatments, or any encouraging news, to offer. In the back of my mind is the fear of being (as you put it) "fired" by the neurologists. Thanks for pointing out that this may be the MOST caring approach. And thanks to you and others on this board for showing how to face even a pretty depressing diagnosis and still find strength and joy in life!

I know I've posted this link before; I think it helps explain why some people are "fired" by physicians.
A Letter to Patients With Chronic Disease

While I agree that doctors should be more candid with patients, at the same time I recognize that those doctors don't want those patients to lose hope because that particular doctor cannot help them. Medicine is a (lifetime learning) process, and while some doctors are more comfortable sticking with what's well-known (conservative) others are forging/pioneering new knowledge. It's a sticky wicket.

Yet you're here and on the Web (almost) every day continuing your search for answers/information, and doing everything you can to improve your health.

I think the answer/reason is the same—Hope. :o

Doc

I am not sure it is hope. I follow this forum because there is hope for many PNers, but there really isn't for CMT. The posts are interesting, the regulars, yourself included, are very well informed and dedicated, and sometimes I can contribute something that may help someone else or just share a "me too" experience. It is a great forum.

Information about CMT from other sources on the web is either repetitive or erroneous- the old belief that it doesn't cause pain keeps popping up from cites that just paste that darn Mayo page- so SFN is really painful, unless it is caused by CMT, then it isn't? And having your muscles twist and wither couldn't possibly cause pain? The percentage of people who end up in a wheelchair is skewed too, unless I know of a disproportionate number of them, perhaps the others are too busy skiing and cycling to write about it. The idea that treatment is around the corner seems strongly rooted in the talisman-like properties of stem cells, which I am not entirely comfortable with ethically. I also think that corner may be the same one Hoover mentioned.

I do what I do- exercise, watch my weight, take fish oil and B-12, castigate myself for my frequent failures to do all of the above, in case it slows things down, but I am not sure that qualifies as hope. I do not like being a burden on the family. I firmly believe in the relationship of pain management to quality of life, though, so maybe that relates to your comments as in "I hope I can get off the sofa today."

I think of myself as a cynical, ruthlessly logical and realistic person. Hope has always hovered beyond my grasp. Now my husband? He is always hopeful. Sometimes it makes me want to kill him, but it does balance things out.