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Old 02-08-2014, 08:07 PM #1
Kirky Kirky is offline
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Originally Posted by Kitt View Post
There is no cure/treatment for CMT. No magic bullet, no supplements, pills, etc. A person should eat healthy, exercise within reason and deal with symptoms as they come along. Moderate activity is fine and know when to stop as far as exercise. Swimming is very good. Moderate consumption of alcohol is fine but not over indulgence. Alcohol was removed from the medical alert list in 2004.

Hope this helps.
Is it possible just to get used to the bad burning and tingling sensations?
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Old 02-08-2014, 08:33 PM #2
Stacy2012 Stacy2012 is offline
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Any alcohol at all send my feet into a flare. Sugar and carbs will too if I consume too many.

I do not get "use to" the burning. I have not really made any huge improvements except some minor help with zyflamend. I consider myself blessed that it is not getting worse.
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Old 02-08-2014, 08:50 PM #3
tboots125 tboots125 is offline
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Kirky, I have found Nortriptyline gives me relief of the burning and tingling and the sharp electrical shocks as well.
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Old 02-08-2014, 09:32 PM #4
Susanne C. Susanne C. is offline
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Kirky, you are still on a relatively low dose of Gabapentin, aren't you? Therapeutic doses are about 1800-2700 mg daily. It still doesn't work for everyone even at that, but you usually won't know if it works at lower dosages.
Dr. Smith has has good results on the burning with R-Lipoic acid. I have started that and have noticed a difference in the burning skin on my thighs, it seems to help.
I do think that you get used to some of this. It doesn't stop being painful but it stops being alarming.
I also think you probably have CMT, and neurologists often diagnose it very casually as if it weren't a really tough thing to deal with. They can't treat it so they drop it on you and walk away, at least mine did. No one can tell how it will progress, but rapid progression may be followed by some stability for a while. It does inevitably progress.
You are, understandably, looking for a quick tun around with this, but it isn't likely to happen. You may achieve some little improvements, you may stabilize for a while, but the best thing you can do is come to terms with the reality that you have a chronic illness. There are a lot of books on the subject, some are quite helpful. You must also decide if you want your doctors to be more aggressive in pursuing a diagnosis, which may always be elusive, and in treating your pain.
Yes, the cold makes everything worse. It has been a rough year for many of us.
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Old 02-08-2014, 09:23 PM #5
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Quote:
Originally Posted by Kirky View Post
Is it possible just to get used to the bad burning and tingling sensations?
You should ask your neurologist what you should do about that. I only have that if I walk or stand too much. Food or alcohol does not bother or cause it. Just speaking for myself.

Also, as far as alcohol is concerned for a CMTer, it is what I posted. Moderate consumption is O.K. You cannot over indulge. As I said, alcohol was removed from the medication alert list in 2004. This information is only for a person who has CMT.

An added note as far as shoes are concerned. If you have weak ankles you can wear a high topped athletic shoe or a boot that is high enough over the ankle. This can help a lot. It worked for me for quite awhile. Put a little padding in which also helps such as Dr. Scholl's odor eaters or the gel insoles. You can experiment with that.
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Last edited by Kitt; 02-08-2014 at 09:51 PM.
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Old 02-09-2014, 03:37 PM #6
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Is it possible just to get used to the bad burning and tingling sensations?
Is it possible just to get used to any kind of pain/discomfort? I think it's an issue of degree/necessity, prospect, and choice.

Degree/necessity: How bad is bad? One person may be able to get used to what they judge to be level 5 or 6 pain, while another may have difficulty with what they judge to be level 3 or 4. Some sources say that the goal of pain management is to 1.) reduce the sense of suffering and 2.) improve the quality of life. That's pretty vague, and leaves a lot of room for interpretation. Pain Management doctors evaluate patients according to (among other factors) what effect pain has on their day-to-day lives—are they (patients) able to get enough healthful sleep, are they able to take care of their day-to-day needs (work, school, chores, errands, paying bills, hygeine, etc.), is there excessive preoccupation/obsession with pain, major depression, etc. In short, are they able to function, and how well.

Prospect: Is it harder to get used to discomfort when there is no prospect of relief, or when there is prospect of relief, but one (for whatever reason/s) can/does not avail oneself? This brings us to...

Choice: For whatever reasons, people make choices about whether to seek/accept some kinds of medical help/treatment or to forgo or discontinue them.

Only you can decide how bad these sensations are, and if you can/will be able to just get used to them. Time will help some; life has an indomitable ability to adapt and persevere.

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