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.

I was diagnosed with severe Axonal Neuropathy September 2024 but believe it started in 1976 after the Swine Flu vaccination at Fort Dix, New Jersey, shortly afterwards first 3-4 weeks Digested Problems, Nerves Problems with my Back then followed by many other problems.
Can anyone help me could it have started that from back I can’t get an answer from anywhere.

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I was on gabapentin for 10 months and now I've been diagnosed with osteoporosis. I'm wondering I need to know is this precisely part of the cause or is it just we don't know it could be.

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I was on gabapentin for 10 months and now I've been diagnosed with osteoporosis. I need to know is this precisely part of the cause or is it just we don't know it could be.

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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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@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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Hi @SusanEllen66, You might try Xero shoes or other brands that have zero drop soles. They are like walking barefoot with the exception of your foot is protected. I have several pairs that I switch back and forth with between my regular shoes Orthofeet which feel better and I can walk a little farther distances in but are a little more cushy and my balance is affected. The Xero drop sole shoes have very little padding in them although you can put orthotics in them if needed. - https://xeroshoes.com/

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@johnbishop

Hi @SusanEllen66, You might try Xero shoes or other brands that have zero drop soles. They are like walking barefoot with the exception of your foot is protected. I have several pairs that I switch back and forth with between my regular shoes Orthofeet which feel better and I can walk a little farther distances in but are a little more cushy and my balance is affected. The Xero drop sole shoes have very little padding in them although you can put orthotics in them if needed. - https://xeroshoes.com/

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@johnbishop thank you! Actually I was just online researching and found shoes like that on Amaz..

I will check these out.

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@pfbacon

Your replies are so interesting ... The descriptions of Neuropathy that I read before I joined this group suggested that it was just a complication of diabetes that felt like tingles and needle sticks -- it's way more than that. I was already far beyond the 'needles and tingles' stage and experiencing acute pain; and I'm hypoglycemic, not diabetic, so I didn't know which end was up. I am learning from all of you that there are is a kaleidoscope of symptoms and remedies; most of us seem to be trying new things as we deal with the progression of our condition. It is helpful that we share information here. Peggy

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Hello Peggy.

I'm diabetic with Peripheral Neuropathy. I have cut almost all sugar out of my life.

I also take 1,200 Mb's of Gabapentin 3 times a day. To help with the chronic pain it creates, I take 3 - 10 Mg Percocet's per day.

Those things help pretty well some of the time, but other times I suffer agonizing pain in both feet for a few hours until I am forced to take more medicine.

I occasionally apply salves that contain Lidocaine on both of my feet to help deaden the tingling, burning, painful and tingling in my feet.

I recently discovered a company that said they have developed a product called NERVE SAVIOR. To use it you take two pills a day and they say you can experience reductions in your discomfort within 5 days.

I haven't tried it out yet though. I'm planning to start using it very soon. I'll report my results using NERVE SAVIOR within two to 4 weeks after I start starting it. I don't know how long you need to take the ingredients contained in the pills. They do contain natural things including, a variety of vitamin's and natural substances that come exotic places.

I'll write back and let you know if the manufacturer was successful in preparing this life-improving product that's supposed to deal successfully with Peripheral Neuropathy .
God Bless you Peggy.

David Schmidt
72 years old
July 15, 2024.

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@teutonicdavidsch88

Hello Peggy.

I'm diabetic with Peripheral Neuropathy. I have cut almost all sugar out of my life.

I also take 1,200 Mb's of Gabapentin 3 times a day. To help with the chronic pain it creates, I take 3 - 10 Mg Percocet's per day.

Those things help pretty well some of the time, but other times I suffer agonizing pain in both feet for a few hours until I am forced to take more medicine.

I occasionally apply salves that contain Lidocaine on both of my feet to help deaden the tingling, burning, painful and tingling in my feet.

I recently discovered a company that said they have developed a product called NERVE SAVIOR. To use it you take two pills a day and they say you can experience reductions in your discomfort within 5 days.

I haven't tried it out yet though. I'm planning to start using it very soon. I'll report my results using NERVE SAVIOR within two to 4 weeks after I start starting it. I don't know how long you need to take the ingredients contained in the pills. They do contain natural things including, a variety of vitamin's and natural substances that come exotic places.

I'll write back and let you know if the manufacturer was successful in preparing this life-improving product that's supposed to deal successfully with Peripheral Neuropathy .
God Bless you Peggy.

David Schmidt
72 years old
July 15, 2024.

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Yes let us know. I take 2700mg of Gabapentin now for 3 months. Works well with my concoction of marijuana and Cat's Claw which is a vine from the amazon that has helped for hundred of years with arthritis and neuropathy. I also take a bit of whiskey in evening when my regiment of Gabapentin is done for the day.

Waiting for your experience with Nerve Savior.

Cheers, Jill

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@jillchristline

Yes let us know. I take 2700mg of Gabapentin now for 3 months. Works well with my concoction of marijuana and Cat's Claw which is a vine from the amazon that has helped for hundred of years with arthritis and neuropathy. I also take a bit of whiskey in evening when my regiment of Gabapentin is done for the day.

Waiting for your experience with Nerve Savior.

Cheers, Jill

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Hello David @teutonicdavidsch88, I would like to add my welcome along with Jill @jillchristline and others. I haven't tried Nerve Savior as I only have numbness and some tingling with my neuropathy but there are other members who have tried it. You might want to read through their comments posted in other neuropathy discussions. Here is a link to the experience shared by other members on Nerve Savior - https://connect.mayoclinic.org/search/comments/?search=Nerve%20Savior.

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@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 have always done barefoot at home and at 83 no foot problems but still have neuropathy

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