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?

hello Not a bad night with my nueropathy..Could be worse but could be a heck of a lot better lol

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Anybody use Kratom?

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@mcgatt

Anybody use Kratom?

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I do

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@wilcy

Pint every day! Only thing helping neuropathy! Had shots, gaba etc!

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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.

Liked by 10yahya

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

It it effective? In what form you use?

Liked by 10yahya

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@mcgatt

It it effective? In what form you use?

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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!

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@mcgatt

It it effective? In what form you use?

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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!

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@summertime4

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.

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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!

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@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.

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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.

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@chandyjohn1

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.

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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.

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My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

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@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

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Hello @catro, Welcome to Connect. I'm 76 and have had PN for 20+ years. I haven't experienced the burning when sleeping but have been woken up by the sharp pins and needles and tingling in the arms caused by laying on my arm/hand while sleeping on my side which I think pinches a nerve. Mayo Clinic lists some causes for burning feet here: https://www.mayoclinic.org/symptoms/burning-feet/basics/causes/sym-20050809.

Just curious if you have asked your doctor why you can feel OK during the day but wake up at night with the symptoms you describe?

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@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

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Sir: My age and symptoms are similar, although only just roughly 2.5 years since beginning. As nerve damage is not easily repairable I've done some thinking about taking the brain, which rationalizes the pain experienced, OUT of the process. That has led me to psychotherapy (or CBT, cognitive behavioral therapy) and I have discovered an article which has helped me a lot. There is not an internet hyperlink to the article so I am inserting a couple of the article identifier numbers as follows: PMCID: PMC3000182
PMID: 21152145. I suggest you Google one, or other number, or both.
I hope you can find this article this way, If not, I will try to cut and paste it to you via some other means

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@constitution

Sir: My age and symptoms are similar, although only just roughly 2.5 years since beginning. As nerve damage is not easily repairable I've done some thinking about taking the brain, which rationalizes the pain experienced, OUT of the process. That has led me to psychotherapy (or CBT, cognitive behavioral therapy) and I have discovered an article which has helped me a lot. There is not an internet hyperlink to the article so I am inserting a couple of the article identifier numbers as follows: PMCID: PMC3000182
PMID: 21152145. I suggest you Google one, or other number, or both.
I hope you can find this article this way, If not, I will try to cut and paste it to you via some other means

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@constitution thank you for the article identifiers – here is the links you mentioned for @catro.

Psychotherapeutic Approaches in the Treatment of Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000182/

Psychotherapeutic approaches in the treatment of pain.
https://www.ncbi.nlm.nih.gov/pubmed/21152145/

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