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.

stevemann | @stevemann | Jan 21, 2022
In reply to @swanny58 "Has anyone tried Vicks rub to relieve neuropathy?" + (show)
@swanny58

Has anyone tried Vicks rub to relieve neuropathy?

Jump to this post

I’ve tried a bunch of different creams and lotions but none really helped. Recently wash the caspian cream and I couldn’t wash it off fast enough! What helps me is and lotion and just massaging my feet before bed and before pitting socks on.

REPLY
Moderator
Amanda Roe | @amandajro | Jan 22, 2022
In reply to @swanny58 "Has anyone tried Vicks rub to relieve neuropathy?" + (show)
@swanny58

Has anyone tried Vicks rub to relieve neuropathy?

Jump to this post

Hello @swanny58. You will notice that I have moved your post into a larger discussion on Neuropathy so that you may more easily connect with members who may also have tried Vick's for relief of neuropathy symptoms.

Have you tried it? Has it worked for you?

REPLY
1puttman | @1puttman | Jan 25, 2022

HI !! I post as iputtman. I am an 81 year old male from Burlington, NC and have had ideopathic PN for about i5 years. I am pretty much past the pain and tingling but numbness continues and progresses. I play golf about 3 times per week and my balance has been significantly becoming worse. I have visited a neurologist at Duke University and have had several tests but nothing seems to be able to reverse or slow down the malady. What a truly EVIL disease !!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 25, 2022
In reply to @1puttman "HI !! I post as iputtman. I am an 81 year old male from Burlington, NC..." + (show)
@1puttman

HI !! I post as iputtman. I am an 81 year old male from Burlington, NC and have had ideopathic PN for about i5 years. I am pretty much past the pain and tingling but numbness continues and progresses. I play golf about 3 times per week and my balance has been significantly becoming worse. I have visited a neurologist at Duke University and have had several tests but nothing seems to be able to reverse or slow down the malady. What a truly EVIL disease !!

Jump to this post

Welcome @1puttman, I also have idiopathic small fiber PN. It started in my toes in my 50's as near as I can remember and gradually worked it's way up to just below the knees before I bothered getting a diagnosis. You are right. It is a truly evil disease. I've never had the pain with my neuropathy but do have the numbness. I posted my neuropathy journey in Member Neuropathy Journey Stories: What's Yours? discussion here - https://connect.mayoclinic.org/comment/310341/

I think exercise and staying active is part of helping a person with their new "normal" when they have neuropathy. It's good that you are able to stay active.

Have you tried any alternative therapies, treatments or supplements to see if they help some?

REPLY
1 reply
1puttman | @1puttman | Jan 26, 2022
In reply to @johnbishop "Welcome @1puttman, I also have idiopathic small fiber PN. It started in my toes in my..." + (show)
@johnbishop

Welcome @1puttman, I also have idiopathic small fiber PN. It started in my toes in my 50's as near as I can remember and gradually worked it's way up to just below the knees before I bothered getting a diagnosis. You are right. It is a truly evil disease. I've never had the pain with my neuropathy but do have the numbness. I posted my neuropathy journey in Member Neuropathy Journey Stories: What's Yours? discussion here - https://connect.mayoclinic.org/comment/310341/

I think exercise and staying active is part of helping a person with their new "normal" when they have neuropathy. It's good that you are able to stay active.

Have you tried any alternative therapies, treatments or supplements to see if they help some?

Jump to this post

Yes, upon advice of my neurologist, i take alpha lipoic acid 600mg 2/day, tumeric 1500mg 2/day. I'm not really sure that it helps but it's not that expensive and i'm willing to take the chance. Other than that, i just try to stay as active as possible. We have a chiropractor in town that advertises that he can cure pn but i think that is just to harvest $$.

REPLY
calannie | @calannie | Jan 27, 2022
In reply to @almighty "9 weeks ago I had my hB1ac levels come in at 74, this was up from..." + (show)
@almighty

9 weeks ago I had my hB1ac levels come in at 74, this was up from previous from 44. I immediately started a low Kcal diet of 800 Kcals a day with 4 litres of water. 8 weeks later I was tested again. My new level was 45, I was taken off all medication officially by the diabetic nurse. (I had already stopped taking them 4 weeks earlier)
9 weeks and 3 days after the first test I have lost 48 lbs and have more energy than ever. I still have the damaged nerves in my feet but none of the inflammation that caused it and the pain I was getting every evening. I can sleep uninterrupted.

Jump to this post

Hi, I'm new so unsure of protocols here--but what is Kcals?
I have neuropathy in my feet--just from balls of feet through toes. Not totally numb so endochronologist has never been too worried about it, but leg swells and limits my movement, and currently one foot is dusky--much darker than the other foot. Didn't even know there were different types of neuropathy.
I'm interested in slowing progress but without drugs--I control my pre-diabetes with diet and herbs.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 28, 2022
In reply to @calannie "Hi, I'm new so unsure of protocols here--but what is Kcals? I have neuropathy in my..." + (show)
@calannie

Hi, I'm new so unsure of protocols here--but what is Kcals?
I have neuropathy in my feet--just from balls of feet through toes. Not totally numb so endochronologist has never been too worried about it, but leg swells and limits my movement, and currently one foot is dusky--much darker than the other foot. Didn't even know there were different types of neuropathy.
I'm interested in slowing progress but without drugs--I control my pre-diabetes with diet and herbs.

Jump to this post

Welcome @calannie, Here's an explanation of Kcal vs Calories -- https://www.healthline.com/nutrition/kcal-vs-calories. I also had swelling in the legs with my neuropathy but was later diagnosed with lymphedema of the legs and now wear compression socks daily. You mentioned controlling your pre-diabetes with diet and herbs. You might find the following discussion helpful.

-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

Have you seen a cardiologist for your leg swelling and darker foot?

REPLY
pyrifera | @pyrifera | Jan 28, 2022

Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms and legs. I thankfully have a very good neurologist. I have gotten some relief from the hyperesthesia in the last few months from 300mg Gabapentin enacarbil each morning and night, with 300mg Gabapentin in the middle of the day. I use CBD balm and take 30mg CBD in oil twice a day, which helps with the tremors. I wear padded gloves and padded socks to minimize the sensations on my hands and feet. Hoping to have a skin biopsy later this year to see if I can get a test that affirmatively says I have SFN instead of just a diagnosis by exclusion. Glad this community exists.

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 28, 2022
In reply to @pyrifera "Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms..." + (show)
@pyrifera

Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms and legs. I thankfully have a very good neurologist. I have gotten some relief from the hyperesthesia in the last few months from 300mg Gabapentin enacarbil each morning and night, with 300mg Gabapentin in the middle of the day. I use CBD balm and take 30mg CBD in oil twice a day, which helps with the tremors. I wear padded gloves and padded socks to minimize the sensations on my hands and feet. Hoping to have a skin biopsy later this year to see if I can get a test that affirmatively says I have SFN instead of just a diagnosis by exclusion. Glad this community exists.

Jump to this post

Welcome @pyrifera, It's good to hear you have found a neurologist that is helping you find some relief. You might also be interested in another discussion where members have shared their journey with neuropathy and what has helped them -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Other good sources of information to learn more about neuropathy are:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Do you mind sharing your biggest challenge with neuropathy, the symptom that bothers you the most?

REPLY
Debbie | @dbeshears1 | Jan 29, 2022
In reply to @pyrifera "Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms..." + (show)
@pyrifera

Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms and legs. I thankfully have a very good neurologist. I have gotten some relief from the hyperesthesia in the last few months from 300mg Gabapentin enacarbil each morning and night, with 300mg Gabapentin in the middle of the day. I use CBD balm and take 30mg CBD in oil twice a day, which helps with the tremors. I wear padded gloves and padded socks to minimize the sensations on my hands and feet. Hoping to have a skin biopsy later this year to see if I can get a test that affirmatively says I have SFN instead of just a diagnosis by exclusion. Glad this community exists.

Jump to this post

Hi! Welcome to the group as you start this journey. You mentioned wearing padded socks. I am searching for good ones to especially walk around the house with, and to sleep in so I can easily walk to the bathroom in the middle of the night. I can’t walk barefoot without discomfort, and I just haven’t found the right socks with padding in heels and toes. Do you have a recommendation for what works with you? Thanks, Debbie

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.