Running and exercise
 

Hi
Just wondering, l have only had burning feet and hot hands now for only a week. I normally Run pretty hard a few times per week. I haven't as my children are on school holidays. Is is safe to go back to running? Will it make my feet worse?


Thanks Sue

I don't think anyone can say here.

Certainly we have had some posters here who did lots of exercise and one gal after a pregnancy set off both feet with
overdoing it.

A week for foot burning is not very long. It might be an injury, or a reaction to food/MSG, friction in the shoes, anything.

PN is a long time thing. One can keep it in check, but it is always there in some way, waiting to flare up.
Here is one of the early posts, for this person:
http://neurotalk.psychcentral.com/post627253-4.html
You can click on her name and read her other posts.

Basically I am the type to not do something if it hurts. Resting an injured thing seems prudent for a while.

Yes, I would be doing gentle exercise for a while to see how it goes. Exercise is important for microcirculation so the blood can get to the tiniest of nerves for healing, but there are many ways to do it without overdoing or using lots of pressure on the feet.:)

Cher member
 

Hi Again,
Do upon know what happened to the member Cher? How is she going.

Sue:(

People come and go all the time on the internet.

We are fortunate that some of our experienced posters stay around to help others. But many people get on with their lives, and leave.

PN is a learning experience and this forum has the information needed for living with it. I expect people to move on when they take that information and use it. Some come back after months, with updates. Cher did alot of magnet experiments because her PN was shown to come from certain nerves in the foot, which can be targeted with magnets to reduce pain. Global burning sensations are not going to respond the same way as her pain might have.

Controlling PN may involve some life style changes for the most part. Some people are unwilling to do that. An example is going gluten free, and other dietary changes. Some people don't have medical insurance and cannot afford the testing to find some triggers. And the hereditary forms of PN like Charcot Marie Tooth, don't have treatments yet. Some symptom control with epsom salts, Biofreeze, or the like may help with discomforts, but the hereditary forms tend to progress at their own rates.

It's good to hear
 

That people move on. Its means they are able to move on and live.
She you say global pain, do you means hot hands?

Also, you said other hereditary forms of NP? How do your know if have one of these? Do these kinds normally start in childhood like Susanne?

Also, do your think the neurologist will be ale to tell me from tests if this kind of neuropathy is from having too much wines?

It's my birthday on Friday and my husband has bought me a very expensive bottle of champagne, but l am so scared to drink it just in case l cause more nerve damage? I just can,t relax at all with this.

Also invited for dinner to friends on sat, how am l not going to drink? I am just c
Scared of having one drink....:(

sue

If your hands are hot, and feet, try Biofreeze gel.

This is very cooling and works extremely well for hours.

Biofreeze is a disappearing gel, leaving no residue or icky sticky base.

Thanks
 

If it gets much worse l will try it.

Thanks again
Sue

I would try and compartmentalize your responses to this problem.
It is very new for you still.

One thing I do is only focus on "problems" a certain amount of time a day....and then close that door, and get on with your life.

Decide to avoid MSG and food triggers, for now, but don't dwell too much. Dwelling on symptoms increases STRESS responses, increases insulin secretion, and cortisol, and this seems to make pain worse. Also thinking about pain too much fixates the pathways to the brain, and it is thought to be a negative thing leading to chronic pain later. It is best to distract yourself as much as possible.

Trying so hard to do
 

Just that. But it's just so hard. How am l ever going to be able to relax in life again, when l don,t know what is waiting for me. If l relax and then it comes back stronger than before it will be overwhelming again.

My husband doesn't,t believe l have anything yet, l guess his denial a bit, but for me hearing and reading how the disease progresses over time is very, very frightening. Its always nice to hear people get better as they age, and not go downwards. I just don,t want to get out of bed one day and not be able to walk or enjoy my life. I don,t want to make a big deal of it either, and l didn't,t at first until l realised how bad it can get.

So even though l try desperately hard not to think about, my mind just wonders back. Even in the middle of the night.
I,ll be doing something else and catch myself thinking about all the information l have read and my symptoms. I feel like l am going mad at times.

Sue

If you haven't had a medical issue yet in your life, this one is the first and you have to learn how to handle it.

When I was your age I had my first mammogram which came out positive. That was very hard on me. I'd find myself driving the wrong way down streets, and mulling on it all day long.
It was a painful learning experience about mortality and illness for me.

It turned out to be a "false" positive, after 3 more tests. And I was liberated !

My PN started in my 30's and mostly my feet hurt all night long.
I thought it was from my job which was all standing long hours.

I learned to focus on other things, and put that discomfort on the back burner. It is not easy, but one can do it.

I must say I take heart knowing that others have faced down the challenge, thanks.

Hi Sue, I'm also just trying to find out what is going on and it can be overwhelming. I have found the Internet a mixed blessing there's lots of good information but there are also lots of scary stories.

I take heart knowing there is so much support and many others have soldered on. Take heart, nothing has been confirmed and you can get through this. I found a really encouraging post from Wing42 "Reversal or improvement of your PN!! (success story's)" (towards the end of the page).

I am finding it best not to let myself think too far ahead.

Hi, CMT symptoms can become evident when you are young, old or in-between. Or the symptoms might not be that evident at all. CMT varies greatly even within the same family. If you carry the gene symptoms could start at anytime and not just when you are young. Or, as I said, symptoms might not be that evident and you wouldn't know you had CMT at all. CMT is slowly (usually) progressive as time goes on. No one not even a doctor can predict how you will end up. CMT is inherited but if you do not inherit the gene from a parent you will not have it. Sometimes there is a rare mutation and a person will get it.

There are tests out there to determine if you do indeed have CMT. Or at least they might be able to rule it out. There are many tests but not for all the types as of yet. Lots of research is going on.

They also check your family history. DNA blood testing is available thru Athena Diagnostics and it is not cheap. You really would need to see a good neurologist who knows CMT. They also do EMG/NCV tests. From those they might be able to tell if you could have CMT1 or CMT2. However, there are many types of CMT and many subtypes of it.

Check out the information under PN Tips, Supplements Resources and Other Treatments at the top of this site. There is one on there concerning CMT.

I personally cannot stand Biofreeze on my feet. However, some CMTers can. I do use it on my back and calves when needed. Epsom salts help when soaking your feet if they are hurting. It is trial and error.

A drink now and then will not hurt you at least as far as CMT goes.

Good luck with your problem and I hope you get the answer.

I love to exercise, but caution should be used.
 

I exercise daily and feel that has helped my symptoms. In your case , however, take some time off and see if that helps. I have had odd minor injuries while exercising in the past and they took time to go away. This is common in middle age.

My PN symptoms became evident at the age of 45. It started out with dizzyness and progressed to tingling and numbness in the extremities. Also, worsening memory. I was very scared thinking maybe I had MS or a brain tumor. I had basic blood work done and eventually had MRI's and nerve conduction tests performed.

The neurologist said since I drank that this was most likely the cause. I think that the alcoholic neuropathy diagnosis is commonly used by many of them when the basic tests come up normal. It gives them an out. I badgered him and in the end he confessed he really had no idea what my problem was. He told me to come back later when it got worse and he would prescribe me neurotin. I have never seen him again.

After extensive research I made use of many of the recommenedations found on this forum. The supplements combined with a change in lifestyle/diet have made a big difference to my condition. I'm 48 now and I'm pretty sure the PN progression has been completely halted. It now very slowly is moving in reverse. I don't expect to be 100% back to normal ,but that is still my goal. Time will tell.

Take some time off from exercise and see how you feel. If that doesn't help, then look at the supplements suggested on this site and compare them to what you are currently taking if anything. I can tell you the feelings of panic slowly subside and are replaced with a resolve to get better. That approach in my opinion is the best medicine. Good luck.

Chill out
 

My first week to a month with nueropathy was horrible but mostly because I was in a state of panic and I thought it was crawling up my leg. I stayed on the couch the first weekend thinking I may never walk again. Well I still don't like it but somehow am living with it among a host of other medical stuff. I remain very active, hiking and stuff. I went on a road trip waterfall tour last weekend. We visited about 8 or so spots. A very long day. I remained barefoot until we reached a destination and then put on my hiking boots and walked and climbed up waterfalls. My feet get very warm doing that. It really sucks but I have had more serious medical issues and when that happened I said, "I just wish I was just dealing with nueropathy. I was never a runner and I'm not even sure a lot of running is good for anyone. Too much alcohal is bad for anyone, but I'd go for it this weekend. It's okay to be a little anxious but don't jump too far ahead. No one ever knows what tomorrow brings. End of sermon...