Living with Neuropathy - Welcome to the group

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?

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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@ujeeniack

It sounds like you have diabetes. My neuropathy began about two years ago.

Today I read about three approaches to NP. Chromocell, a private company in NJ,is working on a treatment that may be NON-ADDICTIVE.

Also, marijuana got a positive mention for various pains, not just NP.

A combination of Acetaminaphen (Tylenol) plus a NSAID might be as useful as an opiod!

I still think Ketamine needs to be evaluated.

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@ujeeniack – I have idiopathic peripheral neuropathy, which means the doctor has no idea what caused it. I’m not supposed to take NSAIDS because I had peptic ulcers 7 years ago. It really limits what’s available to me.

Jim

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Good morning, I am 71 I was treated with taxotete for breast cancer in 2006 as a result I now have neuropathy in my feet and I wanted to,know is there any
Supplement tha I can take to deal with the discomfort.

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@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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@gman007 Ignorance seems to reign in the a plutocratic realm where anything that can palliate pain and suffering surely must be outlawed. No matter what, there are always those who abuse that set the rules for the others.

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@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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@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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@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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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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@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.

Liked by marystefy

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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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@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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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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@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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@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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@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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@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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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

Liked by marystefy

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