Everyone with Peripheral Neuropathy

Posted by mjpn2012 @mjpn2012, Jun 5 10:18am

We all experience pain and loss of feeling in hand feet etc
The reasons for the nerve damage vary with many groups. Simplifying this into two main groups:
(1) Those with progressive conditions like diabetes, alcohol of similar. Naturally the doctors try to treat the cause of the damage probably before they treat the pain
(2) Those with one off damage from toxins, viruses that have damaged the nerves as a one off event - the doctors in many of these cases say idiopathic and offer pain relief.

But we all have pain and reading your comments I suspect that we all have good days, bad days and very often there appears to be no reason.

I think it would be interesting to share the things that excite the pain.
I know if I drink lots of strong coffee, sit cross legged and stop the blood flow on a cold day my chances of pain are much higher. If I drink some red wine on a warm calm day outside they are less. This is not scientific but it could be.

If we had a structure database that we all contributed to we may see strong patterns that could be used to guide people to have less pain.

Anyone interested either technically, financial or as an information contributor? Maybe Mayo Clinic would read the data and comment?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Similar - my PN came after a toxic event (spike drink) - test show it has not progressed (apart from a little aging) over last 12 years - but the pain stays. I had blue feet at the start. Has your PN progressed since the Chemo?

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@marthadean

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I have tried it to and it has helped somewhat.

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I would definitely be interested. So far I haven’t come up with any rational explanation for my idiopathic neuropathy pain in both feet. Exercising, not exercising, different diets, sleep positions, vitamins and supplements, special insoles for my shoes, you name it. Nothing seems to make a difference.

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