1. < Neuropathy
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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.

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davidpn | @davidpn | May 20, 2023
In reply to @davidhpress "Thank you for your information. I think I’ll add the mushrooms to my daily supplements. I..." + (show)
Profile picture for davidhpress @davidhpress

Thank you for your information. I think I’ll add the mushrooms to my daily supplements. I have found that Benfotiamine, alpha lipoic acid, primrose oil, acetyl l-carnitine and grape seeds supplements on top of my prescription Lyrica have largely eliminated at least the sharpest of the tingling. I did find a supplement that puts most of these together in one liquid instead of all the pills. I just received a bottle and will be switching over in a day or two. I’ll report back here if it works well. I’m hopeful the mushrooms will work well for me. Thanks for sharing your information.

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I don’t see where the mushrooms are discussed.

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davidhpress | @davidhpress | May 20, 2023
In reply to @davidpn "I don’t see where the mushrooms are discussed." + (show)
Profile picture for davidpn @davidpn

I don’t see where the mushrooms are discussed.

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Someone earlier recommended Lion’s Mane mushroom supplement. I’ve tried it now only for a few days and have noticed no effect. I think it will not be added to my regular regimen of supplements.

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John, Volunteer Mentor | @johnbishop | May 20, 2023
In reply to @davidhpress "Someone earlier recommended Lion’s Mane mushroom supplement. I’ve tried it now only for a few days..." + (show)
Profile picture for davidhpress @davidhpress

Someone earlier recommended Lion’s Mane mushroom supplement. I’ve tried it now only for a few days and have noticed no effect. I think it will not be added to my regular regimen of supplements.

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The Foundation for Peripheral Neuropathy has a list of supplements that studies have shown to help neuropathy here (it's at page 5 of the document) - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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davidhpress | @davidhpress | May 20, 2023
In reply to @johnbishop "The Foundation for Peripheral Neuropathy has a list of supplements that studies have shown to help..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

The Foundation for Peripheral Neuropathy has a list of supplements that studies have shown to help neuropathy here (it's at page 5 of the document) - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Big thanks, John. I’ve tried many of the supplements on the list with Benfotiamine (one of the B vitamins) being the most effective. It’s a little difficult to follow up on each recommended supplement or I can find myself taking 20-30 pills twice a day and breaking the bank. I’m always looking for combination products that allow me to stop taking 10 or 15 pills a day and take one product instead, especially if it makes everything more affordable. I’ve had success with Nuturna’s Alpha-Lipoic premium liquid formula which includes many of the recommended supplements. I’m still experimenting with recommendations and doing pretty well now.

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davidpn | @davidpn | May 20, 2023
In reply to @davidhpress "Someone earlier recommended Lion’s Mane mushroom supplement. I’ve tried it now only for a few days..." + (show)
Profile picture for davidhpress @davidhpress

Someone earlier recommended Lion’s Mane mushroom supplement. I’ve tried it now only for a few days and have noticed no effect. I think it will not be added to my regular regimen of supplements.

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One more question. When you “no effect” with regards to what.

Thanks.

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davidhpress | @davidhpress | May 20, 2023

I didn’t notice anything but I haven’t even given the Lion’s Mane even a week for any effect on neuropathy.

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tedpellerin | @tedpellerin | May 21, 2023

Hi, I’m a small fiber neuropathy person (4 years) that over the last 6 weeks is losing foot use due to burning pain. I take 1800mg gabapentin daily. Will upping my meds help?
Thanks all and I wish folks well.

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cher27 | @cher27 | May 21, 2023
In reply to @pat79 "HI. I am 79 years old and have had 3 back surgeries. I have chronic pain...." + (show)
Profile picture for pat79 @pat79

HI. I am 79 years old and have had 3 back surgeries. I have chronic pain. I had scoliosis so they did a fusion of L3-4-5. I guess it is straighter now but it always hurts. And I guess that resulted in the neuropathy. That is more bothersome than the back pain. Would like to hear from others who are experiencing the same type of problems and what they do about it. I am scheduled to have a Stimwave spinal stimulator implanted. I am really worried about whether that will help or make things worse. Thanks for any help anyone has. pat79

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I have a consultation for spinal stimulation in mid June. Please let us know how it goes. Thanks.

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Mentor
John, Volunteer Mentor | @johnbishop | May 21, 2023
In reply to @tedpellerin "Hi, I’m a small fiber neuropathy person (4 years) that over the last 6 weeks is..." + (show)
Profile picture for tedpellerin @tedpellerin

Hi, I’m a small fiber neuropathy person (4 years) that over the last 6 weeks is losing foot use due to burning pain. I take 1800mg gabapentin daily. Will upping my meds help?
Thanks all and I wish folks well.

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Hi @tedpellerin, Sorry to hear the neuropathy has gotten worse with the burning pain in the feet. Hopefully other members can answer your question about upping the gabapentin dose above 1800 mg and will it help. My guess is that it may or may not since each of us are different. There are a couple of other discussions you might want to view to see what others have shared on the burning pain.

--- burning soles of feet: https://connect.mayoclinic.org/discussion/burning-soles-of-feet/
--- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/

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patpalme | @patpalme | May 22, 2023

I’m pat, and I have burning mouth syndrome, which my ENT says is a trap of neuropathy I’m to go on gabapentin once I wean off amitryptalin I’m just using products for dry mouth but doesn’t really take away the burning pain

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