Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@johnbishop

Hi Rob @ospreysurf, welcome! I'm glad you found us. It's good to be off sugar for many different reasons not only neuropathy ☺ Alcohol also is not good when you have neuropathy. If you are interested in trying over the counter vitamins and supplements, you might be interested in checking out the website for the closed Facebook group where I found what I use – http://solutions2pnpd.com/. It's a lot of reading but it has helped a lot of people. The group has about 8,000 members now with all different types of neuropathy. It may or may not work for you but it's an all natural solution – no drugs and a lot of members have been able to taper off of pain drugs after taking the supplements.

John

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How do I join this neuropathy group

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@stulerner

How do I join this neuropathy group

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@stulerner, just scroll to the top of the discussion and click +Follow — it will change to Following and you will receive an email notification whenever someone posts to the discussion.

See the "Get Started on Connect" users guide to learn how to perform other tasks on Connect. There is a link to the guide at the bottom of every page on Connect in the lower left hand column. There is another discussion you might find helpful here:

Groups > Just Want to Talk > Search – It can help you!
https://connect.mayoclinic.org/discussion/search-it-can-help-you/

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John
I am learning much from those on this site. Thanks to all for sharing. Can someone say more about b12 and PN and the alcohol and sugar connections. Also I had to change all work shoes to soft — the closest to a dress shoe I can wear with suites in a Florsheim “comfort tech” Instead of being caught at work with no shoes on I can tolerate these for a few hours at a time. Feet are still severely painful but these shoes are doable.
Lyrica is harsh to take and work. How do you get by with the effect on speech and memory?! Take care michael

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Lyrica freaked me out the first day, and was only taking 1/2 recommend dose. Stopped in less than 24 hours

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Hi. I suffer from Peripheral Neuropathy. I tried Lyrica and Gabapentin. I had side effects from both so I stopped taking those meds. My Rheumatologist put me on 10 my if Notryptoline because I wasn't sleeping because if the pain. In addition to that I also started taking Alpha Lipoic Acid (vitamin supplement) and Vitamin D3. After just a week I noticed a significant decrease in the stabbing burning pain! If you have a rheumatologist you may want to talk to him or her first to see if this protocol might be beneficial for you. Oh I also got a Homedic foot massager for Christmas which feel a really good on the arches of my feet!

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@thunder32

John
I am learning much from those on this site. Thanks to all for sharing. Can someone say more about b12 and PN and the alcohol and sugar connections. Also I had to change all work shoes to soft — the closest to a dress shoe I can wear with suites in a Florsheim “comfort tech” Instead of being caught at work with no shoes on I can tolerate these for a few hours at a time. Feet are still severely painful but these shoes are doable.
Lyrica is harsh to take and work. How do you get by with the effect on speech and memory?! Take care michael

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Hi @thunder32, here are a few of the links I've found when researching for my neuropathy plus a few from other members.

Vitamin B6 Toxicity
http://www.easy-immune-health.com/vitamin-b6-toxicity.html

B Vitamins for Neuropathy and Neuropathic Pain
https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896

B6 section it explains — too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

FDA Safety Alert: Biotin Can Affect Medical Test Results
http://cle.clinic/2G6Mp4y

Critical appraisal of the use of alpha lipoic acid (thioctic acid) in the treatment of symptomatic diabetic polyneuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3176171/

Alpha Lipoic Acid
http://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid

Is all R-ALA the same?
https://www.bodybuilding.com/fun/idssports11.htm

Alcoholic Polyneuropathy Issues & Treatment
https://www.alcohol.org/comorbid/polyneuropathy/

Low Level Laser Therapy Notes/Posts

Felix @swiss
https://connect.mayoclinic.org/discussion/in-search-of-relief/?pg=1#comment-130717

@holhealthcare
Can Low-Level Laser Therapy Have An Impact For Small Fiber Neuropathy?
https://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

I like this saying that I ran across which pretty much says it all.

DIET
Every time you eat or drink,
You are either feeding disease
or You are fighting it.
The choice is Yours….

There is a lot of controversy that exists in the world of complementary and alternative medicine; that what appears to be working for
you, may not work for others. There is also a lot of misinformation out there when you are searching so you have to do your own research to validate sources and that can sometimes be difficult. Here are a few helpful sources for navigating the potential scams:

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

Good luck on your quest…I hope we all can find something that helps improve our conditions.

When I first started my journey researching I found a book by Dr. Terry Wahls – The Wahls Protocol which got me started on eating healthier. She also has some informative YouTube videos. Here is one – Mind your Mitochondria – Terry Wahls TED Talk:
https://youtu.be/3nm1jrTJgLU

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@sore_debbie64

Hi. I suffer from Peripheral Neuropathy. I tried Lyrica and Gabapentin. I had side effects from both so I stopped taking those meds. My Rheumatologist put me on 10 my if Notryptoline because I wasn't sleeping because if the pain. In addition to that I also started taking Alpha Lipoic Acid (vitamin supplement) and Vitamin D3. After just a week I noticed a significant decrease in the stabbing burning pain! If you have a rheumatologist you may want to talk to him or her first to see if this protocol might be beneficial for you. Oh I also got a Homedic foot massager for Christmas which feel a really good on the arches of my feet!

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Hi @sore_debbie64 — welcome to Mayo Clinic Connect. Thank you for sharing what helps you. It's helpful to know what has worked for other members. It's nice getting a Christmas present that helps get you through the day (or night!) ☺ I also take R-ALA and vitamin D3 along with some other over the counter supplements I found that help with neuropathy.

Do you have any other treatments that help you?

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@johnbishop

Hi @thunder32, here are a few of the links I've found when researching for my neuropathy plus a few from other members.

Vitamin B6 Toxicity
http://www.easy-immune-health.com/vitamin-b6-toxicity.html

B Vitamins for Neuropathy and Neuropathic Pain
https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896

B6 section it explains — too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

FDA Safety Alert: Biotin Can Affect Medical Test Results
http://cle.clinic/2G6Mp4y

Critical appraisal of the use of alpha lipoic acid (thioctic acid) in the treatment of symptomatic diabetic polyneuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3176171/

Alpha Lipoic Acid
http://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid

Is all R-ALA the same?
https://www.bodybuilding.com/fun/idssports11.htm

Alcoholic Polyneuropathy Issues & Treatment
https://www.alcohol.org/comorbid/polyneuropathy/

Low Level Laser Therapy Notes/Posts

Felix @swiss
https://connect.mayoclinic.org/discussion/in-search-of-relief/?pg=1#comment-130717

@holhealthcare
Can Low-Level Laser Therapy Have An Impact For Small Fiber Neuropathy?
https://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

I like this saying that I ran across which pretty much says it all.

DIET
Every time you eat or drink,
You are either feeding disease
or You are fighting it.
The choice is Yours….

There is a lot of controversy that exists in the world of complementary and alternative medicine; that what appears to be working for
you, may not work for others. There is also a lot of misinformation out there when you are searching so you have to do your own research to validate sources and that can sometimes be difficult. Here are a few helpful sources for navigating the potential scams:

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

Good luck on your quest…I hope we all can find something that helps improve our conditions.

When I first started my journey researching I found a book by Dr. Terry Wahls – The Wahls Protocol which got me started on eating healthier. She also has some informative YouTube videos. Here is one – Mind your Mitochondria – Terry Wahls TED Talk:
https://youtu.be/3nm1jrTJgLU

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John – your email was a great resource for me and all on this site. Appreciate your knowledge and willingness to share. MN

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@thunder32

John – your email was a great resource for me and all on this site. Appreciate your knowledge and willingness to share. MN

Jump to this post

@thunder32 thank you for the kind words. I am happy to help and share anything I learn with other members. I do have to confess that it's not really that I have that much knowledge although I wished I did. I save all the links and notes I find helpful or interesting in a simple text file on my computer – links.txt. I have a shortcut on my taskbar at the bottom to open up Notepad…very simple to use. Anytime I find a link I want to remember for future use I copy and paste it into the links.txt file. It's a way that I try to stay organized. I do need to go through it and reorganize the links so that they are categorize since it's getting a little large. It's still much faster to scroll through a text file to find information and then copy/paste into a post when needed. My last post may be step one for a reorganization of my text file ☺

Capture

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@pammy922

Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all…..my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you

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You have been through a lot. I'm sorry for your pain.
Here are some things that help me. I have cidp and sfn. I try to keep to a gluten free diet, no processed food, sugar dairy or alcohol. CBD ointment in 70 CBD to 30 thc ratio helps with night pain. Plain CBD ointment 250 mg helps during the day as does a lidocaine patch 5% on an area with severe pain. I take sublingunal victims B12 along with 2 tsp turmeric in green smoothies per day. None of first tier drugs like Lyrica work for me but I get some relief. from Ivig treatments 2 days a month. My foot pain has decreased because of a good diet and exercise.

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Good details. good advice. thank you

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Has anyone tried high doses of Thiamine for peripheral neuropathy? Has anyone had a colectomy or subtotal colectomy and had peripheral neuropathy subsequent to that procedure? I seem to have multiple neuropathies, cannot take NSAIDS due to the alteration to my intestines and am very reactive to low doses of the "usual suspect" drugs like gabapentin and lyrics. Just wondering if there are any additional studies done on anti-inflammatory herbs and spices that would help. Thanks!

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@silverfox1026

Has anyone tried high doses of Thiamine for peripheral neuropathy? Has anyone had a colectomy or subtotal colectomy and had peripheral neuropathy subsequent to that procedure? I seem to have multiple neuropathies, cannot take NSAIDS due to the alteration to my intestines and am very reactive to low doses of the "usual suspect" drugs like gabapentin and lyrics. Just wondering if there are any additional studies done on anti-inflammatory herbs and spices that would help. Thanks!

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@silverfox1026 @johnbishop
My neuropathy was induced by chemo, and I do take a B Complex pill daily which has thiamine in it… but I don't believe it has made any difference with the neuropathy. My oncologist also dissuaded me from using NSAIDs which have dangerous effects from long-term use. I, too, cannot take gabapentin, or lyrica, or venlafaxine, etc., so I went to a doctor of Chinese medicine who gave me a pill made of several herbs (mostly plant roots) called Zhi Bai Di Huang Wan. It has been given to menopausal women for 200 years to quiet hot flashes. In my case, it cools off my burning hands, feet and legs… and it has been a life-saver. Finally, I could sleep at night.

Like most things used for nerve damage, it works well for some time, and then requires using a higher dose, and then after a while becomes less effective. So I switched to an endogenous fatty acid called Palmitoylethanolamide (PEA) which is used by European neurologists for neuropathic pain from all pathologies. It, too, worked wonders for a while, and then not so much, at which point I began adding back some Zhi Bai Di Huang Wan when needed, trying to keep one step ahead of the burning nerve pain. It's a constant juggling act, especially since exercise (or even one glass of wine) seems to exacerbate the burning in my feet/legs/hands, and I exercise 4-5 hours/week trying to regain my lost balance and coordination since the chemo. Neither product has side effects (except for some slight bloating from the PEA which I alleviate by taking a Beano with each dose).

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Hello, Rob here, a friend of mine tried theomine and found no relief, we are all searching, my nueropothy stems from agent orange, i will say this, my neuropothy is in my feet and ankles, i get almost instant relief from the intense burning, tingling sensation from rolling on Biofreeze cold therapy relief, it lasts an hour or two only but it certainly helps.

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@johnbishop

@thunder32 thank you for the kind words. I am happy to help and share anything I learn with other members. I do have to confess that it's not really that I have that much knowledge although I wished I did. I save all the links and notes I find helpful or interesting in a simple text file on my computer – links.txt. I have a shortcut on my taskbar at the bottom to open up Notepad…very simple to use. Anytime I find a link I want to remember for future use I copy and paste it into the links.txt file. It's a way that I try to stay organized. I do need to go through it and reorganize the links so that they are categorize since it's getting a little large. It's still much faster to scroll through a text file to find information and then copy/paste into a post when needed. My last post may be step one for a reorganization of my text file ☺

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@johnbishop – wow!! thanks again – I'll try to do that!!! bb

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