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.

jackdonn99 | @jackdonn99 | Feb 27, 2023

I am 76 yr old female who has been suffering with neuropathy esp. in right foot and lower leg for about 2 years. I use gabapentin 2400mg daily as well as Low Dose Naltrexone for pain. Had total knee replacement February 1, 2023. Had to go off LDN prior to surgery. I have had unrelenting ,excruciating pain ever since the replacement. Currently using 10mg oxycodone plus gaba with little relief. I know they will be taking me off pain med soon (opiate crisis) and I do not know if I will be able to survive the pain. Has this kind of pain happened to any one and what did you do for relief? I have just been "sick" for the last month with daily nausea and inability to do anything. Feel as if I am not going to make it through this.

REPLY
1 reply
mannyk | @mannyk | Feb 27, 2023
In reply to @roosterry "Well thanks "old timer" you gave me a lot of good tips to try, and some..." + (show)
@roosterry

Well thanks "old timer" you gave me a lot of good tips to try, and some not to bother with.. just wondering if you have had any luck with different types of insoles, or what kind of footwear you have found to be helpful...I too have to use a cane for balance, still drive as well, just miss my walking. Well it is not too cold here in Victoria, B.C. but have had rain off and on for a few weeks. So stay by the fireplace, throw another log on the fire, and keep warm. A hug back and best wishes...Thanks again, Terry

Jump to this post

HI, Terry, and thanks for acknowledging my reply.
Regarding shoes, I buy the cheapest 🙂 weaved cloth type from Walmart, but I do have a custom-made insole, that supports my arch properly.
More advice you definitely do not need from me, is to use a walker if you must and it is that difficult for you, but make the effort to walk..... at least twice daily and count the steps, 100 steps at a time.
If you can do more do it. But walking you must.
Wishing you nothing but the best, and keep smiling, and the world will smile with you.
Pace
manny

REPLY
1 reply
roosterry | @roosterry | Feb 27, 2023
In reply to @mannyk "HI, Terry, and thanks for acknowledging my reply. Regarding shoes, I buy the cheapest :-) weaved..." + (show)
@mannyk

HI, Terry, and thanks for acknowledging my reply.
Regarding shoes, I buy the cheapest 🙂 weaved cloth type from Walmart, but I do have a custom-made insole, that supports my arch properly.
More advice you definitely do not need from me, is to use a walker if you must and it is that difficult for you, but make the effort to walk..... at least twice daily and count the steps, 100 steps at a time.
If you can do more do it. But walking you must.
Wishing you nothing but the best, and keep smiling, and the world will smile with you.
Pace
manny

Jump to this post

Hey there, been smiling since May 24, 1942 never get down, all good, and not even a teeny regret, except for the rock that I threw through someones window , and to this day, still waiting for a rock in return, and I won't even bat an eye, I deserve a brick!!! I have a walker, prefer the cane, and yep, I do walk every day, if too cold I become one of the "Mall walkers" but know full well if you don't use it, you lose it...Thanks, you are a good inspiration, and I suppose I must bow to your seniority.....cheers, Terry

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 27, 2023
In reply to @jackdonn99 "I am 76 yr old female who has been suffering with neuropathy esp. in right foot..." + (show)
@jackdonn99

I am 76 yr old female who has been suffering with neuropathy esp. in right foot and lower leg for about 2 years. I use gabapentin 2400mg daily as well as Low Dose Naltrexone for pain. Had total knee replacement February 1, 2023. Had to go off LDN prior to surgery. I have had unrelenting ,excruciating pain ever since the replacement. Currently using 10mg oxycodone plus gaba with little relief. I know they will be taking me off pain med soon (opiate crisis) and I do not know if I will be able to survive the pain. Has this kind of pain happened to any one and what did you do for relief? I have just been "sick" for the last month with daily nausea and inability to do anything. Feel as if I am not going to make it through this.

Jump to this post

Hello @jackdonn99, Welcome to Connect. So sorry to hear about the terrible pain following the knee replacement. It sounds like the pain may be different from the neuropathy pain you had prior to the knee replacement. Is the leg with the pain the same one that had the knee replacement?

REPLY
1 reply
jackdonn99 | @jackdonn99 | Feb 27, 2023
In reply to @johnbishop "Hello @jackdonn99, Welcome to Connect. So sorry to hear about the terrible pain following the knee..." + (show)
@johnbishop

Hello @jackdonn99, Welcome to Connect. So sorry to hear about the terrible pain following the knee replacement. It sounds like the pain may be different from the neuropathy pain you had prior to the knee replacement. Is the leg with the pain the same one that had the knee replacement?

Jump to this post

Yes, both are on the right leg. I had the neuropathy in a manageable place with the Low Dose Naltrexone before surgery. Had to discontinue the LDN before surgery as it is an opiate blocker. LDN is used in a very low dose (4.5mg) for pain. It is supposed to help my body produce endorphins to help with pain. I just started back on the LDN today at 0.5mg and it will take 5 weeks to get back to my regular 4.5mg dose and couple of months to get back to a manageable pain level. I feel my pain is a combination of out of control neuropathy, knee surgery pain and being off the LDN. Had the left knee done 2 years ago (before I had neuropathy) and it was a breeze to recover. Never expected this. Very despondent.

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nocinnor4h | @nocinnor4h | Mar 1, 2023

I would like any information on laser treatment for the neuropathy.
Thanks

REPLY
mayonaise28 | @mayonaise28 | Mar 2, 2023
In reply to @pdsi43one "I have PN from pernicious anemia. Anyone else?" + (show)
@pdsi43one

I have PN from pernicious anemia. Anyone else?

Jump to this post

Probably. Unfortunately, I can't find a doctor to do the proper tests specific for pernicious anemia even though neurologists have followed the condition for over six years.

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tgcorin | @tgcorin | Mar 3, 2023

I have severe neuropathy only in my feet, & I am not diabetic. I also have RLS often.
I have tried neuronton & gabapenten (sp?) to no avail. I have insomnia mostly because of the pain and restlessness. I would like to know what others with this condition do for relief. I have had this for over ten years, I am 92 years old, female.

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 3, 2023
In reply to @tgcorin "I have severe neuropathy only in my feet, & I am not diabetic. I also have..." + (show)
@tgcorin

I have severe neuropathy only in my feet, & I am not diabetic. I also have RLS often.
I have tried neuronton & gabapenten (sp?) to no avail. I have insomnia mostly because of the pain and restlessness. I would like to know what others with this condition do for relief. I have had this for over ten years, I am 92 years old, female.

Jump to this post

Hello @tgcorin, Welcome to Connect. I can imagine how difficult it is to sleep when you are dealing with the pain and restless leg syndrome. There are a few other discussions where you might find some suggestions from others with similar symptoms.

-- Peripheral neuropathy, RLS and PLMD: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-rls-and-plmd/
-- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/
-- Better Sleep with Chronic Pain?: https://connect.mayoclinic.org/discussion/better-sleep-with-chronic-pain/.

The Foundation for Peripheral Neuropathy also has some information that might be helpful here - https://www.foundationforpn.org/living-well/.

Have you tried any alternative treatments to see if they might provide some relief?

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