Everyone with Peripheral Neuropathy

Posted by mjpn2012 @mjpn2012, 1 day ago

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.

Hello,
With Diabetic neuropathy, controlling the pain might be easier since causes can be traced. With idiopathic (unknown causes) neuropathy, as in my case, pain can be anywhere and everywhere. It's really hard to tell why pain is bad on a day and why not so bad on another day. Moreover, it's also very hard to pinpoint what really might help alleviate the pain when it's bad. It could be anyting.
In creating a structure base, the type of neuropathy has to be identified so people can understand better.
Take care and have a serene evening,
gus

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Totally agree neuropathy especially idiopathic is a needle in a haystack - my own neuropathy was probably the result of an auto immune reaction.
My guess would be that many form of neuropathy are more painful when certain conditions exist. Tracing these would be very difficult, I have taken data daily for months but the conclusions are weak. Maybe between lots of us would could do better.

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anyone knows if peripheral neuropathy weakens your legs muscles so bad till person ends up in wheel chair,,also arms are so weak unable to brush teeth

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@mjpn2012, you might be interest in the Peripheral Neuropathy Research Registry (PNRR) started by the Foundation for Peripheral Neuropathy. The register sets out to do many of the things you're looking for and is already established since 2008. The registry helps to characterize clinical phenotypes and genotypes of patients with peripheral neuropathies (PN) and generate a cohort of well-studied patient populations. Read more here:

- Research Registry (for Patients) - https://www.foundationforpn.org/research-registry/

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Thank you - I will continue to read - they bring many of the aspects together

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My neuropathy is in my hands and feet. It is a side effect from my chemo 16 years ago but it seems the older I get the worse my feet seem to be. My hands really improved a lot, I only feel pain in my finger tips when they are cold. My feet, though...another story. They are getting worse and it feels like it is going up my legs. I walk daily, but if I am on my feet too long, then I feel it when I am off my feet for a bit and then stand up and walk, even around the house. A few times I have had those extremely sharp nerve pain in my right foot too. My gosh, those are very painful. I soak every night in the tub and it tends to help some, but I have not found anything to really take the pain away. Any suggestions? I do not want to take prescription medication. I hope everyone finds some relief for their pain.

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My PN started a year or two after taking Lipitor. I developed Type 2 diabetes and then came the numbness, and weakness in my legs and feet only. I never had any pain and it’s been years now with PN and no pain. Why do people have bad pain issues and others don’t. I don’t get it.

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Yes. We could create a spreadsheet with columns for what triggers , extent of pain, and any other comments such how long after the trigger did the pain start and how long it lasted.

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@sbelur

Yes. We could create a spreadsheet with columns for what triggers , extent of pain, and any other comments such how long after the trigger did the pain start and how long it lasted.

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Would anyone be willing to say if their stress is a trigger? That factor could go across the board for diabetic, drug-induced neuropathies etc. Getting a handle on stress is important and sometimes the doctors don't help with that.

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@nayme

anyone knows if peripheral neuropathy weakens your legs muscles so bad till person ends up in wheel chair,,also arms are so weak unable to brush teeth

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It absolutely can when it affects the motor signals. Nerve deterioration can cause muscle weakness in the feet, legs, hands, etc. It can also cause orthostatic intolerance with leg weakness upon standing. Mine has gradually gotten worse over the years and I now use a motorized wheelchair when I go out shopping. It's been a real blessing to have it. Here's an article from Mayo explaining nerve damage. https://my.clevelandclinic.org/health/diseases/14737-peripheral-neuropathy

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