Exercising with PN
 

Okay so I have questions about exercising with PN. Obviously easier said than done! But I think exercise is beneficial for everyone regardless. Does anyone have any types of exercise they recommend? It's so painful for me to even stand up and walk around my house but I'm hoping if I start doing more regular exercise it will improve my PN. Quite possibly it will make it worse which is why I'm asking this question. Thanks!

Many people find water exercises best.

Otherwise you have to be careful.
Some people find light movement useful, but if you are in
terrible pain, you have to be careful.

If you have back issues or any compression anywhere, be careful.

Thank you
 

I was checked for back problems on an MRI and they only found degeneration in my neck which they said wasn't the cause of my PN. I like the pool and we have one at the gym we belong to, but I never go. When I walk my feet get so hot and painful. They also swell most of the time. Not sure if this is just due to inactivity or if it is directly related to neuropathy. The only compression I know of is my ulnar nerve.

Exercise doe NOT make my pn better. :(

But I do it anyway.

Arobic tapes seem to work best because the feet are moving but not pounding the pavement like walking outside. However, I like a good walk on my treadmill so I do walk a fast pace at an incline on my treadmill for 30 minutes. I do either of those every single day and when I am done my toes are always flaming red and hot to touch but it subsides within an hour. When I walk outside on the pavement it gets more irritated.

I wont give up exercise so I live with it....until I can't.

edit to add: I use to do exercise in the pool and if you do it RIGHT you can really get a good work out in. But it is not my favorite kind of exercise.

While it does not help my pn it does not make it worse either, simply irritates my toes for about an hour afterwards.

Thanks Stacy
 

Do you have swelling ever? My feet get red hot also but they also swell sometimes which is concerning and I plan to ask my doctor about it.

A young person with swelling ankles is not a good sign.

PN doesn't really do this to everyone equally.

There are other medical things that cause swelling ankles.
So those should be looked into.

Kidney, heart, and thyroid are the big culprits for this. As are various circulation problems like autoimmune conditions.

Cutting back on carbs will also reduce fluid retention, as carbs seem to hold water in the tissues for some reason.

Thanks
 

It's only my feet and toes that swell. So far I don't have any ankle swelling.

My toes look fat and stubby all the time, so I don't no, lol.

I don't think so. Plus I am on a blood pressure pill that is a water pill so I doubt I have any swelling on my toes, but like I said, they are short fat and stubby lol

haha
 

Okay sorry that was funny. Mine are too, but they actually swell. There is a noticable difference. One more thing to think about I guess. Well I just went for a walk with my son. I made it! Only about 15 minutes but I didn't fall. I am always so afraid I'm going to fall over since my heels go numb. Not too much swelling. I think my anxiety gets the best of me at times and makes this situation way worse than it needs to be.

Well join the young/old lady club...I always link my arm onto my husbands or sons arm when i am walking now. They are all over 6 feet so it works, but I call it the old lady walk now. lol My precious twin sons (age 20) automatically put out their arm when they walk near me. :)

That's sweet! It's nice to have people who are there for you. It's priceless. Thanks for all your input it's been nice talking to you all because I have been dealing with this on my own for over a year. My husband knows of it, but he totally can't relate and he works so much I'm left to take care of my 2 year old by myself a lot which keeps me going but at the same time it gets me down, if that makes sense.

My feet do not "burn" but its painful. Its like a hard object pressing at the sides of my ankles. Its difficult to describe. I cannot stand for a long time. But, I exercise regularly. I walk on the treadmill for 30-35 mins on speed of "3" and incline of "7". On some days, when I cannot tolerate the treadmill, I walk outdoor. The strange thing with me is when I start walking, the pain becomes bearable.

I think exercise becomes bearable to me is because at night, either I soaked my feet in warm water with epsom salt or use the Epsom It lotion (courtesy of Mrs.D). I do that every night to make moving bearable for me. Actually, as an added benefit for me the Epsom It Lotion has lessened the stiffness of my fingers.

Even how painful my feet are, I always make it a point to move around. It may not improve my PN but it surely helps my total well-being.

I agree walking is more bearable than standing. My PN is more of a burning/freezing feeling during the day and then at night it's an aggressive tingle that effects mostly my legs. Almost like RLS. Standing in one spot makes my legs ache and that's when they swell. I have tried walking but that usually makes them swell also. I will try the soaking but sometimes I'm sensitive to the heat.

The very first time I soaked my feet, I experienced a burning, painful sensations. I mentioned this to Mrs.D but she said she never experienced it.

I tried using it again and after a while the sensation of burning disappears. So I am using it now every night. As you know our bodies react to certain medications/supplements different ways.

My sister had this episode of swelling feet and legs. She was not taking any diuretic medications. But, she has varicose veins and she stands a lot being a teacher. This was resolved by wearing the compression stockings. Of course, this will not apply to you because you might not tolerate wearing tight stockings. Have you consulted a doctor about the swelling?

Yes I actually went today and they ordered my some of those. I'm willing to try them but I already told the dr. it probably won't work. I sit all day at work so she is concerned that blood is pooling but I told her I don't have swelling when I sit. Only when I stand or walk. We shall see. Also testing my thyroid AGAIN. I don't even remember what's it's like to have normal legs and feet anymore. You know if it's not one thing it's another.

That was exactly what happened to my sister, when she was lying down or sitting, the swelling subsided.
I agree with you on trying EVERYTHING to alleviate the pain. While trying to find the cause of my PN, and believe me, I had all kind of tests but nothing came out of it. I guess when you are just starting with a disease as painful as PN, all your energies and attention are focused on finding the cause/s, treatments/medications. But, at a certain point, when all everything humanly possible has been done and nothing is found out, you will learn to live around with it - not necessarily accept it but maybe live with it.

There are so many things h appening in my body now. I have a lung infection and recently, my PFT showed I have a little of both COPD and Restrictive Lung Disease. I have thyroid problems. For a while, I was hoping that the cause of my PN is my thyroid that once it stabilizes the pain will disappear but, sadly, no. Now that I am taking a cocktail of antibiotics, one side-effect is the absorption of Synthroid. So, aside from dealing with the side effects of the antibiotics, I have now to monitor my TSH, T3 and T4, which are right now going haywired :-(. For a long time after my total thyroidectomy, i was only taking Synthroid but when the T3 became abnormal, the doctor added Cytomel. I will take my test mid January and see the effect of this additional medicine. I discussed with the doctor about the slow-release cytomel, but he told me to give his prescription some time.


Yes, you are right, if its not one thing, its another :)

"I guess when you are just starting with a disease as painful as PN, all your energies and attention are focused on finding the cause/s, treatments/medications. But, at a certain point, when all everything humanly possible has been done and nothing is found out, you will learn to live around with it - not necessarily accept it but maybe live with it. "

well said.

What is going "haywire" with your thyroid, what do you mean by that, high numbers? Low numbers?? Just curious.

I am on desicated thyroid meds and they have worked great for me.

As of my last test (Nov 23, 2012), my TSH was 10.160 (High) and my T3 was 1.9 (Low) and T4 was 1.11 (Normal). That was the first time my T3 was abnormal after my total thyroid surgery in 2007. It was then Cytomel was added to Synthroid. I had several occasions when my TSH was high but it would normalize after adjusting the Synthroid. I read in one of the posts about the slow release Cytomel. In fact, Mrs.D suggested some valuable sites to read. I mentioned this to my endoc and he told me to give his prescription some time before considering the compounded formula. Well, my next test will be mid Jan. I hope my numbers will be okay.

Thanks for asking.

I hope your tests come out great and that you find the right medication. :)

This may be an off topic froom the main subject matter which is PN, but I am wondering those taking Synthroid and/or Cytomel, does it affect your blood sugar level? Just curious.....

I am not taking either of those, but from everything I have read I have never seen that mentioned.

I am on desicated thyroid meds and it does not affect my blood sugar.

Hi faith
 

Mrs. D is right. You have to take it easy. I do have PN in my left foot, ankle and calf. I also have a joint that was frozen and they wanted to fuse it. Well that didn't go over so good with me. I began gentle excersices that my son recommended. He is an OPTA. The pain was bad to start with but now has diminished to the point socks and the shoe doesn't hurt as much. I can also bend the joint. I go to a physiatrist, who also said this was helpful. If you can find some professional help, exercise can really help. ginnie

I have been on synthroid for 20 years now and I never have trouble with blood sugar levels. I do find however if I am not eating enough or properly my sugars can go really low.

I have not been exercising for a while now but I decided to try my exercise bike recently. I only do 15 minutes for now but at least it is something. I will build it up. I don't have problems when I'm walking. My legs feel so weak when I just stand still or when I come up stairs. I don't think exercise will improve my PN but you never know.:)

I know that PN makes exercising a challenge. I continue exercising e.g. walking outdoor or doing treadmill, it may not help improve the PN, but, can it further damage the nerves? I remember my first neurologist told me that there is nothing physical that I can do to worsen the nerves. But, then I read in one online article (maybe Mayo's site, not sure), that you shoudl avoid crossing your legs.

I have also heard to avoid crossing your legs but I think that is more if you are sitting or sleeping maybe. Not many exercises would have you crossing your legs for any length of time. It could be bad due to nerve compression or circulation I suppose.

Crossing your legs when sitting is what I referred to....

I mentioned in my posts, I walk almost everyday. However, lately, I notice that walking makes it really difficult for me. There are very painful parts of my legs and feet that comes and go. There is no pattern of areas affected or interval between the pain. It is very randomly. BUT, its painful. I could not even walk 15 mins because of the discomfort. Its hard to describe the pain.

Yeah I know what you mean I think. I have lots of discomfort walking or even standing for any amount of time. I just need to find out what's causing all this it's driving me crazy and making my life horrible. Well I hope you find some relief!

Till 2 weeks ago i did bench pressing,deadlifts,squats ..etc and that for almost 2 years now with small fiber neuropathy.
But half december I felt some numbnes in my finger tops except for the pink.
My neuro adviced me to stop for a while.

When my PN symptoms started, I did not realize that my pain then was just a "preview" of what to come. Anyway, there are other health issues that developed after the PN diagnosis that requires more frequent doctor's visits, more toxic medications, that I sort of grudgingly accepted the PN pain while shifting my focus to the other health condition. All this time, I continue to exercise not only for my nerves but more so for my lungs.

My question to those who regularly exercise inspite of the pain, if you can tolerate the "intolerable pain" and you continue to exercise (because for me, not exercising is not an option for my lungs), will I further damage my nerves?
My exercises are:

1. treadmill (incline of 7 and speed of 3) - when the pain is tolerable;
2. walking outdoor - when pain is moderate

Now that my feet and legs are REALLY hurting, I still want to do teh walking even slowly. I probably can still do it but I am concerned that my pain must be telling me to rest for a while or forcing to walk while the pain level is high might damage some nerves. Will recumbent bicycle be safe?

Swimming or water exercises (in a pool) is not for me. The splashes could create an "aerosolized water" that can potentially carry a bacteria which I can inhale. (My apologies for some who might think I am insensitive to those who love pools. I could not just take the risk of being exposed to bacteria or virus especially that my WBC and Neutrophils are too low.)

Will appreciate insights.

An incline of 7 is pretty steep, why not set it on a 3 or 4???? I would think that would be less painful.

I don't believe it hurts the nerves and if I can tolerate it I will continue. I think the key is to do what you can tolerate.

Thank you Stacey. Well, the 7 is pretty tolerable when my pain is within the tolerable level :-)

I guess I overdid myself in my exercise. I will go back to my usual walking. What is important is knowing that exercise will not do any more damage to the nerves.

:)I have asked that question of a lot of doctors and have not been given an answer. They usually respond that some exercise is necessary to keep muscles from becoming to weak. I have to agree with that. I have used my exercise bike. It does not increase my pain but I can't gaurantee it does no harm to t he nerves. I have searched many sites looking for the answer also but have not found anything that states exercisemakes neuropathy worse.

My doctor wants me to exercise for blood flow so the nerves are fed. So they get oxygen, etc. Movement/stretching does that, doesn't have to be hard or stressful.

Hi There,
Sorry your going through a difficult time. I was wondering the same thing about SFN and exercise and came across your post.
My question is the same as yours to those who regularly exercise inspite of the pain, if you can tolerate the pain and you continue to exercise will It further damage our nerves? I like going on the treadmill to stay fit. But there are days when my feet burn (slightly) and walkin makes the burn worse. Sometimes I end up with some tingling in my lower calves too. I wonder if the TM is making my "condition" worse by further damaging the nerves? (I stay at around 2.4 and incline 4.)
Also, I was reading some of your posts from last year re your "normal" skin biopsy. Did you have another Skin biopsy since last April? Were you Dx with SFN or PN since then. If not how does the Dr explain your symptoms?? I had a "abnormal" skin biopsy last Oct. all other neuro diagnostic tests were normal, including vibratory, pins, hot & cold. I have neuropathy symptoms, but no cause was found. (Idiopathic -I hate that word) Burning feet, pins & needles in my legs, arms and fingers. (no numbness) some other painful sensations on and off and some days I feel it on my face and lips. Im having a hard time accepting that this "disease" that seems to have come out of nowhere has no cause. I am otherwise in great health. Have they found a cause for your neuropathy yet? Sorry for ranting, but its difficult to accept that there is no cause or that we may never heal..:(

If a person has a hereditary PN such as CMT, and there are many, many types of it, you can exacerbate CMT with too much exercise. There is a fine line. We cannot build up atrophied, dead muscles. Just saying. :(

When my PN symptoms started more than over a year ago, I had almost all possible tests I read here but all came back normal. I had my skin biopsy but came back normal too. My journey in finding out the cause for my PN was long and arduous, just like most of the posters in this forum. The EMG/NCV was normal. My muscles are strong, in fact the word my doctor used was “robust”. He did not seem incline to give me another skin biopsy. I intend to have another skin biopsy in the future. You are right, it is hard to believe that something as painful as we have has no cause and possibly no treatment.
My symptoms are like yours: prickly skin (it used to be constant but now its minimal) but its my feet which are becoming really more painful. The feet pain I used to experience was nothing compared to the pain I have now.  But, inspite of the pain I still try to exercise because it is very important for for my other health conditions. This is the reason why I need to k now that exercise doe not do any more damage to the nerves.

I am not an expert, but my neurologist and everything I have read would seem to indicate that you are unlikely to damage or hurt the nerves in any way through sensible exercise. What Kitt is talking about is the impossibility of regenerating dead or wasted nerve and muscle tissue due to CMT through exercise or any treatment, supplements, etc. in this case overdoing it can be damaging because it leads to fatigue and weakness and energy must be conserved, not squandered.
That doesn't mean that exercise isn't helpful at all in CMT cases. I am able to hike with poles on relatively level ground for several miles at a time. In this way I am able to preserve and even strengthen what muscle is still present and functional. In spite of this regime I am able to cover noticeably less ground than this time last year and the same route takes a little longer. I am tireder, my feet and ankles are thinner, the muscles are not coming back. Exercise does help with circulation and mental health, so even if one should not expect too much from it, movement should be deliberately incorporated in a daily wellness regime.

I cannot imagine being able to walk on a treadmill. My balance and coordination have always made it impossible. I fall down no matter how the doctor tries to adjust it for me.