Hi folks,

I was wondering whether any of you know if it's a good idea to do light / moderate or even hard intensity workouts when you have nerve damage. Does it help or hinder regeneration.
I have PN and want to do everything I can to try to help myself, nutrition wise I am doing everything advised my neuro and nutritionist, but just wanted to know about gym work outs, running and swimming. If you have any experience or advice, then I'd really appreciate it.

Hayley

Exercise is great! Let me qualify that. I don't know the cause of your neuropathy, so I am going to assume that you do not have some medical process going on that caused it that would contraindicate exercise (for example, exercise may aggravate tarsal tunnel syndrome, or some systemic illnesses may require rest -- check with your doctor). But usually, exercise is wonderful. It may not facilitate regeneration, but it will help you maximise the strength and balance you do have, and will help you be your healthiest self, which can only be good. Just listen to your body and keep it reasonable. Anyone, with or without neuropathy, can overdo. Many of us are limited by pain in what we can do, but do the best we can.

First, run it by your doctor. Depending on your age and whether or not you need a stress test before you join a gym (that's what happend to my husband), they found a blockage and he had to have a stent put in.

I think it's always a good idea to ask your doctor "hey, I want to start an exercise program, any reason why I shouldn't"???.

He'll either give you a thumbs up and say "take it easy on the knees, or wherever you have any kind of problem", or he'll say "no, not until you get checked out".

Everybody has various problems, but exercise gets the heart pumping, brings oxygen to the cells, etc.

Walking is always a good beginning. (that is if you are able to do this).

So I wish you well on your road to exercising.

Remember to have fun.

I put on my ipod, turn on the disco music and I go for walks. Sometimes I hobble, but I get there.

I exercise, and actually did competitive (recreational) athletics with PN, altho I had no idea that the pain and other symtpoms I was feeling, were indeed PN.

In general, I totally agree with Dakota, and she knows of what she speaks.

I have a few additional problems that most people do not think of when they think PN. I have global anhidrosis---do not sweat to heat. So I have to make extra efforts to cool myself. I have hypotension and bradycardia, so I have to take care to keep my BP up, and know when to fold, and lie down. Exercises against gravity, such as hiking and running stress my autonomic system terribly and my BP and P decrease the longer I am upright, until they all together dump on me. I do have meds to raise my BP, and I can use compression clothing....provided it isn't too hot.

Other issue, it with sensory neuropathy, make sure you are confident of where your body postion is. Proprioception can be greatly off with PN...using a mirror to make sure you can see your body will help. When outside, not much you can do.

Pool exercise is always great. I learned to swim very well, the worse my PN got, the better of a swimmer I became....because I do not fight gravity, don't traumatize my bones and joints, and don't have to worry about balance or a fall. You can even run in water. I do.

That said, I still bike, still try to lift weights (very hard on me--but I have myopathy too) I swim and I walk....just saw an orthotist today and got spine, AFOs and shoe orthotics to see if we can get me to be able to jog, just a little. I look like the bionic woman. (Actually, what I got is fairly innoccuous and mostly carbon fiber---we shall see how it goes??!!)

I had to promise to do just a little....just to give myself the 'feel' of it. I will never be a runner again--too much nerve and bone damage and risk. Running on already damaged nerves is not advisable. But I can maybe run a few steps and walk a few steps?? Maybe? Depends on how numb I am, or how bad the spine and tibias hurt.

I have a bit of a risk taking personality, so, for me to not feel too depressed, I have to do these things. Plus they increase my endogenous opoids tremendously, and I am sooo much less depressed.

I won't be able to keep up this level for too much longer, and I know it, but I will make hay while the sun shines. My spine isnt going to take too much trama, as it is hard to stay upright for more than an hour without feet going numb and back hurting so bad I have to lay down.

It may seem oxymoronic, that I still do the sports, but they are entangled so much in my self image and who I am, that I don't see I have much option. I am in the position where, I can do this, not every one is. I have more foot numbness... I do not have the burning pain, I have aching pain. That said, I often over do, and end up in the ER, with my famous puke-spasms, which are in themselves, exercise.

I am looking at other things like kayaking or canoeing. I can hike but not too far, no backpack. I can kite (no skis this time). I can snowshoe with orthotics or specialized snowshoes.

I always take a cell phone and hubby says, pretty soon, he will put a GPS beacon on me.

I have never been to a recreational competition where I haven't met folks with very huge physical challenges, amputees, people with aneurysms, blind people. I once met a one legged cyclist who was crossing the country on his bike on a ride to benefit the lung assoc...also a blind cyclist.

Consult a knowledgeable PT....some one who knows neuropathy and loves sports. You can have one that knows neuropathy and doesn't understand a person who loves athletics and you get a bunch of therabands and a few sheets of instructions. You can get one who loves athletics, and you get the go ahead to do things WAY too much for neuropathics......you need to find one who wants to work with people with neuropathy, who understands the many neuropathies that there are, and who respects and will help you live the way YOU want to LIVE! Then you need to be reasonable as to what you can safely do, listening to your body.

Hi Folks, thanks so much for your replies. Good to hear that I can keep on - will also check with the Neuro - although he doesn't seem too clued up to be honest. I love to be out and about and I'm hoping as we all are that the symptoms are going to improve with time (and patience - which is a new skill for me!)

I'm 30 and really active. I workout at the gym before work most days. I am also going to ensure that I get plenty of rest time, earlier nights, have cut out drinking all together.

The other thing I was wondering is if any of you notice that tingly parts - hands and feet for me get cold more easily?

Again, big thanks for your advice.

--with the addition that one's exercise program not only will depend on one's tolerance, but also on what kinds of fibers are affected in one's neuropathic syndrome.

Those with primarily small-fiber sensory syndromes generally have less difficulties with body feedback--the larger, myelinaed sensory nerves are involved in proprioception--and so can generally exercise to a greater extent without bad aftereffects (beyond increases in pain in some instances, but all efforts should be made to control such nerve pain, anyway).

People with larger sensory fiber involvement may experience greater fatigue as their bodies need to channel more energy into basic balance and position awareness--different types of exercise would be indicated for them (i.e., water activities). And, of course, those with motor neuron problems that cause muscular atrophy have an additional set of considerations, especially as regarding endurance.

Nevertheless, unless there are bone/joint/spinal concerns that supersede, I strongly recommend neuropathy patients to exercise to tolerance--the benefits of increased circulation, muscle strength, and weight control are certainly worth it.

Ditto Ditto Ditto. You're 30. You can do stuff we 60 year olds, can't even dream of.

But when I was 30, I could give you a run for your money. I went to Jack La Lanne every single day. Lost 87 lbs in 5 months and looked like Elizabeth Taylor (back when SHE WAS ELIZABETH TAYLOR) if you get my drift.

Oh, be careful when you go into Saunas, Steam Rooms and hot tubs.

Neuropathy could get flared up by too much heat.

But exercise to your heart's content. Your heart will love you for that.

lol

I may have more large fiber involvement than I know, but my legs below the knee are numb, and I turn ankles and pronate badly enough to need two kinds of orthotics, both worn at once. As far as I know, I supposedly have only SFN....but all over.

As far as fatigue goes. I am utterly exhausted. I literally collapse for days at at time, but when I do come out of it, I get back in the saddle....one step forward, two steps back.

I am always pushing forward and falling back....I would like to say there is balance, but there isn't. I can swim 20 minutes one day and feel horrible the next, then swim 30 minutes and do 15 on a bike and feel great for 3 days, then I can swim 20 mintues and be dead for 3 days....I have in all these years found no way to balance it. And because I do not feel the injury at the time....I find out 48 hours later, that I over did it.

I do not work a job at this time....to work a job and do this level of exercise is out of the question. Neither am I on disability. I am a lot older, at 55, and female. Most healthy women my age don't aspire to endurance cycling or sprint triathlons. My last event was done at age 50....so, yes, I am pushing the envelope, hard...and I could burst it...It is believed my neuropathy is hereditary and looking back, I can say, I probably had issues for over 20 years.....plus a high speed head on...i wont bore you more as others have read all this garbage before.

I am quite positionally challanged and have foot drop after several minutes of walking. As far as I know I have only SFN, but I am wondering about that given I have myopathy, as that is motor neuron, if I am thinking correctly.

I 'do' days when I concentrate only on position, or technique. I am constantly reminding myself of what muscles I am trying to recruit, and how I am compensating or 'cheating'....and some compensation is OK...provided it doesn't cause new problems or injury.

Oh, I am not fond of treadmills for folks with neuropathy...I think they force your gait, and can cause injuries.

I think, again, it depends on what your neuropathy is caused by, to some extent, and the extent of the neuropathy no matter what the cause.

I figured it wasn't easy for Lance Armstrong, and if he has no neuropathy from his killer course of Cisplatinum, I will eat several of his yellow bracelets. I can't do what he did, and neither do I have his doctors, nor net worth.....but, it still makes me think that I can push the envelope beyond what is considered normal or reasonable for my condition, or what might be reasonable for the average person...I don't recommend it to any one else tho. It is my personal choice. My kids were just about born on bicycles, and as a family, we are generally far more active than most.

As far as tingling, numbness, coldness, you can expect just about anything with sensory neuropathy...Buzzing, oscillating, itching, burning, crawling, restless leg, tightness etc. This is one reason it is hard to tell when you are working out too hard...

I have a ton of orthotics, hand, ankle-foot, shoe, back, thumb...you name it, to keep me in the right positions....AND I have put adaptations on sports equipment too. I have aerobars on my bike, and a triple chainring. Weight lifting is causing me issues as my wrists and hands will not take the weight that my biceps or pecs etc can handle...I have to get more inventive.

I am hoping I can 'jog'...I don't know, as walking is a huge issue---dorsiflexor pain and some foot drop after about a half mile....hopefully new orthotics may allow me some short jogs, but they may not make up for the sensory issues. If you get orthotics, get an orthotist who works with disease AND active patients. Question them ahead of time, tell them what you hope to do, or you will end up with the wrong equipment.

Nerves do not like pressure on them...I can tell you that. It is a constant battle not to do more damage to the nerves....if some pain, tingling or numbess persists....I would stop the activity for a while and give the nerves in that area a break.

You will get all kinds of advice...some of it from non-athletes who know about neuropathy but not how the athletic mind or body works...and some of it from athletes who know nothing of neuropathy....listen to things, and find your own pace....remember mind your time and intensity, and that it is a constant getting back on the wagon that you inevitably fall off of. I also have herniated, desicated discs, and running with them without back support has caused some major pain and other 'issues'....so it may be out if this new orthotic doesn't work. I also can not 'run' far. If I ever walk-run a 5K I will be overjoyed.

If you are a hard core athlete, I suggest autonomic testing. I didn't know I didn't sweat to temperature, nor that my BP and P were that low...and that those factors were impeding my performance, and can actually be dangerous.

It has been almost 5 years since I did a recreational competitive endurance event, and I don't know if I will ever do another one again, but thinking I might, makes me not give up all together, when that would be the easy thing to do most days. But I have days and weeks, when I can not move, and it may have nothing to do with over working myself...it just happens. I am 'older' and tho I hate to admit it, 'impaired, or sick'.

I considered myself pretty hard core at one time....again, it is always starting over, and over and over, and not getting discouraged.

Just don't rock climb with numb hands and feet!!!

But only in moderation at first.
Everyone here has given you good solid advice BUT [that nasty word?] there can be limits on what you can and can't or shouldn't do depending on IF your PN is really diagnosed and how bad you have it.
That said, another factor should be how long you've been essentailly 'laid up' with it and out of any action. The longer you have not 'done' anything the harder it is to get back to any kind of 'normal'. So how long you've not been up to 'par' and to what degree should be your barometers as to how soon any exercise can and should help.
One thing about many PN's as you've probably read is that sometimes, overdoing it can do damage. A very reasonable fear! How does one know when one has/is going too far? Well, I can't speak for others but in my own experiences, one of several things can occur..sometimes with a sort of warning and others a big WHOMP! = I am stuck!
Symptoms for warnings to STOP NOW and go no further for me are: Sudden heaviness in my legs, super sudden numbness in the legs/feet and hands, total lack of connection between the legs/feet or hands to the way you want them to go and worst is a very sudden onset of sleepiness. You really have to learn to listen to your body..Do NOT let any enthusiastic PT person tell you to do more once you feel that heaviness/fatigue set in! Ever. That is your limit for THAT day. IF you do more? You will probably hurt. But, if you go slowly and switch off on exercises and do them in small bits during a day and build up slowly [again] I bet you will find that that sort of 'gentle' interval exercise can truly help. I for one went thru 2 rounds of PT at an office then got smart and realized that most of what I needed to do I could do at home. My next round of PT I specifically asked my doc [writing the orders] to specify a HOME program-giving me the things I needed to do at home that can continue to help me after PT is over. I got my theraband, hand weights, ankle weights, and a few other things and can do the basics I need to get and keep myself going. BUT IF you are into more active things...I would seriously follow Cycleops advice. Key to it all is to listen to your own body, nerves and muscles! Don't overdo at any one time...It shall come with well, a 'temperance'.
My goals still? After four plus years are to walk a mile w/o a cane and w/o pain afterwards and to be able to do my 'thing' ride horses again for hours on end... Last time I tried? Only lasted about 30 minutes and I paid for it for days! Actually the worst parts were the driving to and from where I had to go to ride! I was soo tired after slept for 2 days! But, I truly hope you don't have the kind of PN I have! So, don't let that put you off? Just be cautious.
Go, go cautiously and go smart. IF you have been as active as I suspect, I believe that Cycleops can help you get back to somewhere near where you were...IF you don't get worse when starting to hit the limit.
This stuff hits us all in very different ways. That doesn't mean you have to crawl into a hole and have a pity party...Tho at times we do and should. Just know that there are folks who've lots of experiences here who could help.
's - j

hi,at the monent i broke my left wrist and right ancle why fell down the
stairs a few days ago..i've got a picc in my left pit 3 hrs. of antibotics,
and 3 in the evening..broke three teeth,and still must get them fixed,
can only drink glucerna,baby food and broth,3 more weeks..after all this
more stones out og left kindey,already passed the right kidney stones,
and a hermia removed.. bet your sorry you asked...i've had this for a
long time,i fall because have trouble with my balance,and pn in in feet to
knees hands to shoulders,spine,neck..I also have Sjroren symdome,reynaud's
symdome,diabetes 2,adrenelin gland tumor which is ok right now,if it get's bigger
oh boy,low thyroid,high blood pressure gout let's stop i'm tired..i don't think
i listed this many things,also polyneuropathys that are hereditary..

susan hello did you have a nice time in florida hope so,have you heard from
your son...i agree with susan the more you move the better,just don't
hurt yourself, i have years of dance lessons,was a nurse for 25 years,
and have 3 children all in there 30 out in the world doing well,my husband
passed away 8 yrs. ago and would be telling me to keep moving..

mel and alan make us laugh and that it a excercise believe me when i
laugh,i can't stop. mel is right check it out with your dr. have them refer you
to a pt,you might hurt,but if you get into a good place it's worth it.

write everything cyclops has to say she is smart no brilliant,and keeps
moving. but if she need 's to rest you will find her under three blankets and
the gold or yellow dog because the others don't work..she also was a nurse
who should of been a dr..she swims,and her 8 children and hubby of 36
yrs. are the love of her life.

if you need to know anything there's glenn ,,he's brillant,we believe in him
also he is not snotty if you say glenn don't understand,he will repeat
until you do..

billye been through alot, i mean alot but she doesn't give up,she just
went through a lot a is driving drove familar roads,honest i was afraid
she wouldn't walk. don't let her fool you about the silver lady thing,she a tiny
very pretty redhead,she hurts but' she doesn't give up. i say a lot ,a lot

kemb our hero and baxter are hero kitty..anybody who lives on ensure
is our hero,she is a women with tons of guts..she fights back,look out world.

yorkiemon is kind and sweet and loves cheese cake all kinds,she's has been
at this for for a long time never gives up..but please be kinf to eack other.

darlek or j.rescused me in the pm's she know's her stuff not just pn,she
is very intellegent,if you want to know something she will find it..and
she will suggest you read,there's lot's here on excercise, and swettie
read the stickes,she will test you.

mrs.d will be exercising while she tells you about vits. you will get
some good books to read and she is great,when she get's your 92 year Aunt
old out of pain..she has a hansome som who is very good at photography,
and a nice looking husband who it good at loving her. as most the husbands and wife's have to learn as well,not the love part,the cooking and talking to dr.s

lj who has cute don't fool weth me feet. she pops up and she came up with
her sheets who help us all,another never give up..

bob who loves all his kids grandkids.

tony who is not well at the moment and we miss him.

brain who pops up at times when others are sleepy.

our darling rose who it a b12 genious.

jarrret who asks great questions,but this will not always amuse her.

seams who has just lost 40 lbs. and gone back to work.

roxie who does not feel well right night,ggod sence of hurom

i'm just sue welcome to all you new folks,i'm the quiet mysterious one.
and i'm sorry no capitals. we use canes ,sticks,walkers ,scooters,wheelchairs
and fall an roll down hills. yes do as much as you can just don't hurt
yourself. i have been cooped up for far to long...helppppp
hugs to all sue

and dannilla very young doesn't matter wise,hope she can go home mother's
day..i'm determined to visit those ca. girls if i don't fall out of the train door.
now what was it you wanted to know,,oh my poor finger.