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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for fred101 @fred101

I am an 80 year old Vietnam Veteran and have been working with 14 different doctors, trying all kinds of "snake oils" these past years and things continue to worsen including acupuncture, chiropractic, Ketamine infusions, and lately the RHA treatments- none of which helped unfortunately. I am way past the 70.000 mile warranty and now trying "Morning Kick" and Serve Regen so will keep everyone interested who cares to know. The Mayo Clinic and Cleveland Clinic are good sources, but everyone seems to be searching for answers to a very very complex, involved, and individual experience. We can't give up and we have to keep moving for sure. Semper Fi.

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Hi
I am 79 years old and have neuropathy. I just started taking Nortriptyline 20 mg at bedtime and it is the first medication that has worked. I feel 95% better. I am sorry that you have been suffering so long. Have you tried any of the tricyclic medications (nortriptyline, etc.? They are old anti-depressants that have been found to help with nerve pain. My neurologist prescribed it after trying Gabapentin, Acupuncture, etc.
Wishing you the best.

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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@fred101
Fred, thanks for your willingness to put your life on the line back then. With the draft, you probably didn’t have a choice, but you didn’t run away! Those were tough times for you guys.

I have Polyneuropathy . My nerves were damaged by an autoimmune disease. I was diagnosed almost 10 years ago, and I have not found anything with the exception of lidocaine that helps.

A cure does not exist. Yet…

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Hi to all and don't give up. We ARE going to find things that are working for some and hopefully things that will work for us all. HANG IN THERE. Semper Fi

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Hang in there folks. We are going to overcome!!! Semper Fi!!!

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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

My neurologist told me yesterday that my terrible gait issues (crashing into walls etc ) is because of my PN. My feet are numb in many areas. I came home and started walking around the house barefoot. It made a huge difference. I was not so off balance.

Now I need to find shoes to wear outside…can’t go barefoot outside. It’s going to be 111 here today so my feet would be burnt to a crisp!

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I no longer can walk in my home or anywhere bare footed any longer because of my neuropathy it feels like I am walking on GLASS.

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I have had small fiber neuropathy for 25 years controlled with gabapentin 800 mg. 3 x daily plus exercise. Just had my first chemo and PN was quite severe plus balance issues. Does the PN pain get worse with each subsequent treatment?

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Profile picture for duaneh23 @duaneh23

I no longer can walk in my home or anywhere bare footed any longer because of my neuropathy it feels like I am walking on GLASS.

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It’s funny (not) how we’re all affected so differently that half us have cold feet, the other half hot… some can’t wear shoes & socks, and the others are like you & me, can’t walk barefoot because of the pain or difficulty.

I’m guessing you’ve spent time in the various shoes & socks discussions on here. In the end, I’ve been sticking with Thorlo socks type I found with extra heel & toe cushioning to walk around the house; I have to sleep in some too so I am easily get to the bathroom as needed during the night and to also serve to help not let my feet get cold. Advice on here got me to try Skechers shoes that have extra soft soles thick enough to give my feet the cushioned support I need for now, though I’ve learned PN will change how it affects us over time as well.

Do you have shoes and socks that work for you? I’d be interested in what you use to help with the “glass”.

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Profile picture for carolmorrissey @carolmorrissey

I have had small fiber neuropathy for 25 years controlled with gabapentin 800 mg. 3 x daily plus exercise. Just had my first chemo and PN was quite severe plus balance issues. Does the PN pain get worse with each subsequent treatment?

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Welcome Carol @carolmorrissey, Sorry to hear your chemo treatment has caused your neuropathy to get worse. There is another related discussion that you might find helpful to learn what others have shared.
-- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
Have you discussed the PN and balance issues getting worse after the chemo with your doctor to see if they may have some suggestions to help with the side effects?

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Profile picture for omega101 @omega101

Hi
I am 79 years old and have neuropathy. I just started taking Nortriptyline 20 mg at bedtime and it is the first medication that has worked. I feel 95% better. I am sorry that you have been suffering so long. Have you tried any of the tricyclic medications (nortriptyline, etc.? They are old anti-depressants that have been found to help with nerve pain. My neurologist prescribed it after trying Gabapentin, Acupuncture, etc.
Wishing you the best.

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Nortriptyline does work. When my neuropathy was at its
worst the neurologist prescribed this for me also and it works. I’m on 50mg daily. It was the only drug that took the pain away. It does nothing for the numbness or the tingling though and I have yet to find something that does.

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Profile picture for duaneh23 @duaneh23

I no longer can walk in my home or anywhere bare footed any longer because of my neuropathy it feels like I am walking on GLASS.

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Hello @duaneh23 & SusanEllen66. I sure don't want to scare you away. However, I do want to tell you about my solution for PN feet. A few years ago, after crashing a few times, I went to visit a "Mephisto" store in San Diego. They only carry that brand. I was able to find 2 pairs of sandals on the sale rack. In fact, I haven't bought any sandals since then. And....these still look and feel quite new even though I am breaking records by wearing them almost every day.

Since I now live in Minnesota.....I will be looking for some winter styles soon. They are worth every penny (as long as they are on sale!). Have any of you found some Mephistos?
Chris

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@artscaping
Yes indeed, but not on sale. Mine are very comfy as they should be for $300.
I bought them many years ago. Mine also are holding up well.
I was spending the night on a boat, and I fell down the stairs and ended up with plantar fasciitis. When I return to town, I went to shoe store and said I don't want to know the name or price of any shoes. I bought Maphisto, SAS shoes and New balance.

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