1. < Neuropathy

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.

fala | @fala | 4 days ago

I want to ask a question, please give as many answers as possible. You know how it goes...I hope I receive more friends saying "go for it", since it helps more than it harms!
I have had PN for many years. I had to change professions, from outside sales to inside sitting at a desk making MUCH less money!
I know Steroids are NOT a good thing to take, but it is the ONLY thing that relieves my pain. Can I ignore that warning now that I am 90?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | 4 days ago
In reply to @fala "I want to ask a question, please give as many answers as possible. You know how..." + (show)
@fala

I want to ask a question, please give as many answers as possible. You know how it goes...I hope I receive more friends saying "go for it", since it helps more than it harms!
I have had PN for many years. I had to change professions, from outside sales to inside sitting at a desk making MUCH less money!
I know Steroids are NOT a good thing to take, but it is the ONLY thing that relieves my pain. Can I ignore that warning now that I am 90?

Jump to this post

Hi @fala, Sounds like the steroids are giving you a better quality of life by relieving your pain which is a good thing. I would probably have a discussion with my doctor on the pros and cons of continuing the steroids before making a decision.

REPLY
1 reply
fala | @fala | 3 days ago
In reply to @johnbishop "Hi @fala, Sounds like the steroids are giving you a better quality of life by relieving..." + (show)
@johnbishop

Hi @fala, Sounds like the steroids are giving you a better quality of life by relieving your pain which is a good thing. I would probably have a discussion with my doctor on the pros and cons of continuing the steroids before making a decision.

Jump to this post

Hi John,
I really value your comments.
I know you have read more complaints and ideas of pain relief than most people.
Since we are all suffering in many different ways, it makes this site extremely important!
It is rare that two people respond the same way to pain relievers even though we have reported the same pain, same place, maybe even same age! We need as many ideas for pain relief as we can get! Thanks for your comments!

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1 reply
arapaho | @arapaho | 3 days ago
In reply to @arcuri24 "There has been a great deal of literature on the role of diet in dealing with..." + (show)
@arcuri24

There has been a great deal of literature on the role of diet in dealing with neuropathy. One physician even claims a strict diet can even cure it. Besides the obvious culprit sugar, can you tell me what foods do you find that help or exacerbate it? I will add exercise as a suggestion for dealing with this condition.

Jump to this post

I believe it's caffeine, white flour, carbs that raise blood sugar. I don't have diabetes but I noticed mine gets worse if I eat too many carbs and sugar.

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1 reply
mjpn2012 | @mjpn2012 | 3 days ago
In reply to @arapaho "I believe it's caffeine, white flour, carbs that raise blood sugar. I don't have diabetes but..." + (show)
@arapaho

I believe it's caffeine, white flour, carbs that raise blood sugar. I don't have diabetes but I noticed mine gets worse if I eat too many carbs and sugar.

Jump to this post

Thank you for sharing - another piece in the enormous set of puzzles (which puzzle does this piece fit)

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arcuri24 | @arcuri24 | 3 days ago

Thanks for sharing. Yes, sugar and carbs are the usual culprits. I now limit myself to one cup of a half-decaf coffee a day. It is satisfying. I threw my white flour into the garbage. I, too, do not have diabetes but I would like to gain weight. How about a healthy dollop of heavy cream? Avocados also a plus for healthy fat. This type of info is not provided by many doctors. They's rather prescribe something. Do you find that to be true?

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cit10jetjockey | @cit10jetjockey | 2 days ago
In reply to @fala "Hi John, I really value your comments. I know you have read more complaints and ideas..." + (show)
@fala

Hi John,
I really value your comments.
I know you have read more complaints and ideas of pain relief than most people.
Since we are all suffering in many different ways, it makes this site extremely important!
It is rare that two people respond the same way to pain relievers even though we have reported the same pain, same place, maybe even same age! We need as many ideas for pain relief as we can get! Thanks for your comments!

Jump to this post

Scotch is the best pain medication. You will fall asleep or pass out, whatever you want to call it and when you wake up, your hangover will replace your PN pain. You don’t need a prescription or trips to the doctor to hear him say, there’s nothing we can do about this. Okay, HIC, I have nothing more to say, HIC.

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1 reply
mjpn2012 | @mjpn2012 | 2 days ago
In reply to @cit10jetjockey "Scotch is the best pain medication. You will fall asleep or pass out, whatever you want..." + (show)
@cit10jetjockey

Scotch is the best pain medication. You will fall asleep or pass out, whatever you want to call it and when you wake up, your hangover will replace your PN pain. You don’t need a prescription or trips to the doctor to hear him say, there’s nothing we can do about this. Okay, HIC, I have nothing more to say, HIC.

Jump to this post

Red Wine does give Scotch a run for its money. Doctors rarely have time beyond the four drugs. we are the ones who have a 24hr interest that probably have the information on the promoters of inflammation.

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1 reply
ps6288 | @ps6288 | 2 days ago

Has anybody been to a neurologist for their neuropathy

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tntwo99 | @tntwo99 | 1 day ago
In reply to @mjpn2012 "Red Wine does give Scotch a run for its money. Doctors rarely have time beyond the..." + (show)
@mjpn2012

Red Wine does give Scotch a run for its money. Doctors rarely have time beyond the four drugs. we are the ones who have a 24hr interest that probably have the information on the promoters of inflammation.

Jump to this post

Red wine and diclofenac are my nightly routine for my PN. I never know when it will hit.
Mine comes from chemotherapy for BC. After chemo when I went to my first appt with my oncologist, the first thing he asked was, "How are your feet?"
I am a diabetic, but well-controlled. I also now have Purple Toes so I will be seeing my Podiatrist next month.

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