NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Running and exercise (https://www.neurotalk.org/peripheral-neuropathy/167828-running-exercise.html)

mrsD 04-11-2012 07:26 AM

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.

RideOn 04-11-2012 08:03 AM

Quote:

Originally Posted by mrsD (Post 868688)
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.

RideOn 04-11-2012 08:14 AM

Quote:

Originally Posted by Shezian (Post 868686)
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

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.

Kitt 04-11-2012 09:37 AM

Quote:

Originally Posted by Shezian (Post 868554)
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

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.

karsten 04-11-2012 12:49 PM

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.

Stillfighting 04-11-2012 01:55 PM

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...


All times are GMT -5. The time now is 12:03 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.