1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

suzylulu | @suzylulu | Dec 1, 2017
In reply to @parus "@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search..." + (show)
@parus

@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search of relief. Not sure what has caused mine. I was commenting on a comment of some other member about vapo-rub helping- it does help me. Be sure to have your Vitamin D levels checked and also a B-complex can be helpful. Always discuss with your doctor. i am 66 and on some days feel 94. Welcome.

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What is vapor-rub.

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jersey | @jersey | Dec 1, 2017
In reply to @parus "@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search..." + (show)
@parus

@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search of relief. Not sure what has caused mine. I was commenting on a comment of some other member about vapo-rub helping- it does help me. Be sure to have your Vitamin D levels checked and also a B-complex can be helpful. Always discuss with your doctor. i am 66 and on some days feel 94. Welcome.

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Thank you

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kevinking kking | @kevinking | Dec 1, 2017

I write to report on my recent experience with neuropathy. My symptoms lately were leg weakness, instability, and leg and foot pain. I stopped taking Crestor on the advice of "stop all statins." The result has been very good. Some weakness remains, but the pain is gone and the instability has greatly reduced. Just fyi if you take a statin.

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oldkarl | @oldkarl | Dec 1, 2017
In reply to @parus "@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search..." + (show)
@parus

@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search of relief. Not sure what has caused mine. I was commenting on a comment of some other member about vapo-rub helping- it does help me. Be sure to have your Vitamin D levels checked and also a B-complex can be helpful. Always discuss with your doctor. i am 66 and on some days feel 94. Welcome.

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@suzylulu Hi, Suzy. Vapor-Rub is rubbing onto the body a helping of Vick's Vapo-Rub, filled with various petroleum creams. It often helps, especially to breath.

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Gary, Alumni Mentor | @gman007 | Dec 1, 2017

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

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8 replies
Gary, Alumni Mentor | @gman007 | Dec 1, 2017
In reply to @gman007 "It is no longer legal in SC where I live, but I was prescribed Maribol (I..." + (show)
@gman007

It is no longer legal in SC where I live, but I was prescribed Maribol (I think), which is a synthetic marijuana, to stimulate my appetite after surgery because I was losing weight rapidly. It worked great for that, but was also the best pain killer I have ever used. If our legislature and intolerant society would get over the idea that everyone who ever touches marijuana becomes an out of control pothead and then starts using cocaine and heroin and LSD, we would have a plentiful supply of pain killing medication that no one has ever OD'ed from, but I likely will not live that long. Yes @oldkarl, my neuropathy is from diabetes and is still very minor compared to many. I have only been an insulin dependent diabetic since I lost a third of my pancreas and the beta cells residing there.

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@parus I had to get my dictionary out to make sure I knew what you were saying, but you are spot on. jk about the dictionary as I appreciate a strong vocabulary and attempt to expand mine whenever possible. Thank you.

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venki | @venki | Dec 1, 2017

I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I will be having peripheral neuropathy. What are the tests to be taken? I have already taken Nerve conduction test, Colour doppler tests etc. For the past 6 months Im not able to walk freely and my left hand is not also painful.

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4 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Dec 1, 2017
In reply to @parus "@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search..." + (show)
@parus

@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search of relief. Not sure what has caused mine. I was commenting on a comment of some other member about vapo-rub helping- it does help me. Be sure to have your Vitamin D levels checked and also a B-complex can be helpful. Always discuss with your doctor. i am 66 and on some days feel 94. Welcome.

Jump to this post

@parus I've never tried vaporub, but I do use prescription Lidocaine cream on my feet, and it really helps me at bedtime.

Arnica, I have recently discovered, also gives some relief.

Jim

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 1, 2017
In reply to @venki "I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I..." + (show)
@venki

I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I will be having peripheral neuropathy. What are the tests to be taken? I have already taken Nerve conduction test, Colour doppler tests etc. For the past 6 months Im not able to walk freely and my left hand is not also painful.

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Ask for a skin test. It will measure the density of the small or tiny fibers. Often called SFN, small fiber neuropathy can be idiopathic unless you already know you are diabetic.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 1, 2017
In reply to @venki "I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I..." + (show)
@venki

I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I will be having peripheral neuropathy. What are the tests to be taken? I have already taken Nerve conduction test, Colour doppler tests etc. For the past 6 months Im not able to walk freely and my left hand is not also painful.

Jump to this post

Hi @venki, is the neuropathy being caused by a damaged/pinched ulnar nerve or the result of a surgery? Mayo does have some interesting information that may also be helpful here:
https://mayoclinic.pure.elsevier.com/en/publications/management-of-ulnar-nerve-injuries
I think Chris (@artscaping) has some good advice also that you might want to discuss with your doctor.

John

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