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.

mcgatt | @mcgatt | Dec 21, 2019

Anybody use Kratom?

wilcy | @wilcy | Dec 21, 2019

In reply to @mcgatt "Anybody use Kratom?" + (show)

I do

summertime4 | @summertime4 | Dec 21, 2019

In reply to @wilcy "Pint every day! Only thing helping neuropathy! Had shots, gaba etc!" + (show)

When they talk about alcohol related neuropathy the cause is not actually the alcohol.. The cause is when the alcoholic drinks for years and health issues are left untreated. The alcoholic does not take care of their whole person. They are not getting the vitamins the body needs and the alcohol may slow down any absorption of nutrients. I do not drink and haven't for over 30 years. I have idiopathic neurology. I am not a diabetic - so I do not believe having a drink at days end and a bit of relaxation is a bad thing. The thing to remember is eat well, take vitamins. The neurologist has prescribed B12 shots weekly. Vitamin B12 and folic acid are important vitamins for those with neuropathy. My neurologist says my vitamin B12 is not being absorbed as it should. One reason is that I have had stomach surgery years ago which makes it difficult for Vitamin B12 to be absorbed.

mcgatt | @mcgatt | Dec 21, 2019

In reply to @wilcy "I do" + (show)

It it effective? In what form you use?

wilcy | @wilcy | Dec 21, 2019

In reply to @mcgatt "It it effective? In what form you use?" + (show)

Red Bali Kratom! Go to Kratom forums and talk to people using it Am 68 and only thing doctors will prescribe are things like Gabapentin etc! Took it and couldn’t remember my name! I hear govt is trying to ban Kratom! Hurting pharma business! Yes it’s working! Feet still numb but pain is gone!

wilcy | @wilcy | Dec 21, 2019

In reply to @mcgatt "It it effective? In what form you use?" + (show)

I empty 6 capsules in water each morning first thing and 4 in afternoon! Will continue on this forum informing people as I have only been using a week! One thing I have noticed is I can walk a lot farther without having to sit every 100 feet! Feet not as numb with little pain! Good luck!

jeffrapp | @jeffrapp | Dec 21, 2019

In reply to @summertime4 "When they talk about alcohol related neuropathy the cause is not actually the alcohol.. The cause..." + (show)

Hello @summertime4
I agree with most of what you say, except for the first part.
Alcohol can cause PN in two ways. One is indirect, as you describe. However, there is a fair amount of information derived from studies showing that alcohol is a direct neurotoxin, and most likely can cause PN directly.
The million dollar question is how much it is OK to drink, for which I believe there is no answer yet. For other organs like the liver, it seems that over 50 grams a day is enough to cause liver disease. Each drink contains about 15 grams. Cheers!

summertime4 | @summertime4 | Dec 21, 2019

@jeffrapp Thank you for further information on alcohol and neuropathy. I certainly agree with what you are saying. So much new information comes about while conducting new studies on neuropathy. Alcohol on it's own can cause the body adverse effects and neuropathy may well be one of those effects. Your right about there not being an amount of alcohol consumed nor the duration of alcohol consumption. I am a believer in that all things used in abundance can cause problems. How much is too much? How often is too often? I worked as an addiction counselor for 25 years before retiring. I say and truly believe that if anything is effecting your life in a negative way then that anything is a problem. So many questions in this world and so few answers. Cheers and happy holiday to all on this site.

Chandy John | @chandyjohn1 | Dec 22, 2019

I am Chandy John, over 82 years old, an Indian living in Bangalore. I have been suffering from Type 2 Diabetes for over 5 years and now have Diabetic Neuropathy, which makes the soles of both feet numb and tingling with pain. I use Pregabalin 125 mg once a day, which helps reduce the pain only to some degree. I also use Compression Stockings along with a soft-cushioned shoe, which also helps in making the pain manageable.

I am looking for a remedy that will cure me completely of the effects of Diabetic Neuropathy. Any tips or suggestions will be most welcome.

John, Volunteer Mentor | @johnbishop | Dec 22, 2019

In reply to @chandyjohn1 "I am Chandy John, over 82 years old, an Indian living in Bangalore. I have been..." + (show)

Hi @chandyjohn1, I think we are all looking for the same cure for neuropathy. How are you doing on your diabetes? Have you made any lifestyle changes to help with the diabetes?

Here's an article in Medical News Today that might be helpful - Is it possible to reverse diabetic neuropathy?
-- https://www.medicalnewstoday.com/articles/317923.php

@lyssia and @abd123 may be able to share what has helped them.