1. < Neuropathy
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Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

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Pedie | @pedie | Mar 10, 2020
In reply to @johnbishop "@pedie, I take supplements for my small fiber PN and I only have numbness of the..." + (show)
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@pedie, I take supplements for my small fiber PN and I only have numbness of the feet and ankles for symptoms and no pain. Gabapentine only helps with the pain. You can read my story and what helps me in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

Hopefully others can share what helps them also. You really have to do your own research on whatever you decide because there are a lot of companies out there making money off of people with neuropathy. The following article gives an overview of supplements that can help neuropathy but you should still discuss with your doctor before taking them.

Medical News Today -- Which supplements can help with neuropathy?
-- https://www.medicalnewstoday.com/articles/326917

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Will check out the web site. My PN was caused by chemo and radiation. Just recently have been treated for an orphan autoimmune eye disease, so perhaps that aggravated the PN. I have a little pain at night, but mostly very poor balance (my brain doesn't know where my feet are) and the numbness. What supplements do you take? And what is small fiber PN?

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John, Volunteer Mentor | @johnbishop | Mar 11, 2020
In reply to @pedie "Will check out the web site. My PN was caused by chemo and radiation. Just recently..." + (show)
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Will check out the web site. My PN was caused by chemo and radiation. Just recently have been treated for an orphan autoimmune eye disease, so perhaps that aggravated the PN. I have a little pain at night, but mostly very poor balance (my brain doesn't know where my feet are) and the numbness. What supplements do you take? And what is small fiber PN?

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@pedie you can find the list of the supplements I take in the first link to my story for what helps me. I'm glad you are doing your own research and learning as much as you can about your condition. Here are a couple of sites to learn more about small fiber PN.

Small Fiber Neuropathy: Disease Classification Beyond Pain and Burning
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5912271/

Neuropathy Commons website -- https://neuropathycommons.org/

I also have balance issues when I first stand up or have to get up at night to use the bathroom. I use a walker when I get up at night but never need it during the daytime. The Foundation for Peripheral Neuropathy has some good exercises to help with balance including photos here: https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

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Lisa Lucier, Moderator | @lisalucier | Mar 11, 2020
In reply to @rmark "I was treated for cancer of the tonque with chemotherapy and radiation back in January of..." + (show)
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I was treated for cancer of the tonque with chemotherapy and radiation back in January of 2014. Since then I have had peripheral neuropathy in my hands and feet but recenty, in the last few months, I am experiencing constant tingling and numbness in my head and neck and experiencing discomfort in my chest and stomach area.

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Hi, @rmark - that's a lot of your body affected by tingling and numbness. How's the discomfort in your chest and stomach? Did your neurologist comment on the symptoms in those regions at all? If so, what did she or he say?

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Hank | @jesfactsmon | Mar 13, 2020
In reply to @seniordon09 "The 1st thing the nurse does is inject vitamins, nutrients and minerals into the back side..." + (show)
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The 1st thing the nurse does is inject vitamins, nutrients and minerals into the back side of my toes, then go into the treatment room where electrodes are placed on my feet and toes ! The nurse turns the intensity up on the electrodes just as much as you can stand ! The next visit the nurse will inject my toes again and turn up the intensity of the electrodes again ! There was no pain in this treatment and lasted about 20 minutes !

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I'd be interested to know whether there is anything about this treatment on the web. Is there a name for it? Does it in any way involve the Calmare Scrambler therapy? I'd be very curious to know what results you have from this. Thanks.

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John, Volunteer Mentor | @johnbishop | Mar 13, 2020
In reply to @jesfactsmon "I'd be interested to know whether there is anything about this treatment on the web. Is..." + (show)
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I'd be interested to know whether there is anything about this treatment on the web. Is there a name for it? Does it in any way involve the Calmare Scrambler therapy? I'd be very curious to know what results you have from this. Thanks.

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Hello @jesfactsmon -- Here's the discussion on Connect where members are sharing and asking about the Calmare Scrambler therapy.

> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
-- https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

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Hank | @jesfactsmon | Mar 13, 2020
In reply to @johnbishop "Hello @jesfactsmon -- Here's the discussion on Connect where members are sharing and asking about the..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @jesfactsmon -- Here's the discussion on Connect where members are sharing and asking about the Calmare Scrambler therapy.

> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
-- https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

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Thanks John. Yes that's interesting; that one person's experience over in that discussion sounds like what I have previously read about the Calmare therapy on the internet. I was curious whether the treatment that @seniordon09 got was some variation on a Scrambler based therapy, or a TENS type therapy or something totally different.

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waltermc | @waltermc | Mar 13, 2020
In reply to @seniordon09 "I've had PN for 10 years ! Today is my 1st day for PN treatment in..." + (show)
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I've had PN for 10 years !
Today is my 1st day for PN treatment in OKC !
I have to go twice a week for 12 weeks !
It is 300 miles round trip !
I'll keep everyone informed on how these treatments work for me !

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Is there a website for this facility or treatment?

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jaddaj441 | @jaddaj441 | Mar 16, 2020
In reply to @painwarrior "I've been on a Fentanyl patch for years for my peripheral neuropathy. It's the only thing..." + (show)
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I've been on a Fentanyl patch for years for my peripheral neuropathy. It's the only thing that works to keep the burning pins and needles feeling at bay. My strength on the patch is 100 mcg/hr. I replace it at the same time every three days. I really can't survive without it.

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Neuropathy in my feet was caused by Chemo; Why do some try to sway people away from the Fentanyl patch; something about it being synthetic. I've tried everything imaginable and can only wear certain shoes. What else have you tried?

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da20pilot | @da20pilot | Mar 16, 2020
In reply to @jaddaj441 "Neuropathy in my feet was caused by Chemo; Why do some try to sway people away..." + (show)
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Neuropathy in my feet was caused by Chemo; Why do some try to sway people away from the Fentanyl patch; something about it being synthetic. I've tried everything imaginable and can only wear certain shoes. What else have you tried?

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Hi
I have found the natural opioids work better for me such as morphine. Not sure why others are not recommending fentanyl though. Hope it helps

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terrydclaar | @terrydclaar | Mar 16, 2020
In reply to @da20pilot "Hi I have found the natural opioids work better for me such as morphine. Not sure..." + (show)
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Hi
I have found the natural opioids work better for me such as morphine. Not sure why others are not recommending fentanyl though. Hope it helps

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What opioids do you find helpful for foot PN and do you use them orally or topically?

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