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?

@yoda

I’m Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having been to Mayo for the 2-day Pain Rehab event, I am impressed by Mayo and interested in this group. I hope to be useful, and to be informed and advised.

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Hi @yoda, too much b6 is definitely a bad thing. There is quite a bit of information out there on b6 toxicity:
http://www.easy-immune-health.com/vitamin-b6-toxicity.html

John

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@parus

Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella or Neurontin (Gabapentin) for this dreadful affliction??? I am not diabetic. I read about the Ben Gay and know I have total bod neuropathy and cannot tolerate the BG odor. I have also tried the essential oil lavender and some others w/o any relief.

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I’ve heard a lot of different folks have been helped by a compounding pharmacist that can mix the CBD and THC from cannabis so that you get pain relief without the loopy feeling that some fear…but I’m not sure it’s readily available everywhere. Here in Minnesota you have to be approved by your pain management doctor and get on the state’s list – more info here:

http://www.health.state.mn.us/topics/cannabis/

I think one of the big benefits is it is a topical and you get to rub it in where it hurts and get pain relief without what has been described as “foggy brain”. In Minnesota there are only two compounding pharmacist – the Mayo Clinic Rochester and the Lake Elmo Pharmacy – http://www.lakeelmopharmacy.com/pain-management-2.html.

It is most definitely a nasty, unforgiving disease. Wishing for a pain free evening for all my neuropathy friends. Psst…If you don’t like Ben Gay, try Life-flo Magnesium Lotion – has a great smell and it is one of the best moisturizing lotions I’ve used on my feet. Nope, won’t help with the pain or the numbness!

John

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@parus

Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella or Neurontin (Gabapentin) for this dreadful affliction??? I am not diabetic. I read about the Ben Gay and know I have total bod neuropathy and cannot tolerate the BG odor. I have also tried the essential oil lavender and some others w/o any relief.

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Hi@medic7054 where do you live to be able to get it?

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@yoda

I’m Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having been to Mayo for the 2-day Pain Rehab event, I am impressed by Mayo and interested in this group. I hope to be useful, and to be informed and advised.

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Useful info—thank you, John!

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Guess what guys, I have POEMS blood plasma disorder that causes neuropathy in my hands and feet..I’ve found that Vicks Vapor Rub has a lot of uses..

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@parus

Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella or Neurontin (Gabapentin) for this dreadful affliction??? I am not diabetic. I read about the Ben Gay and know I have total bod neuropathy and cannot tolerate the BG odor. I have also tried the essential oil lavender and some others w/o any relief.

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@parus

I have tried so many drugs, I can’t remember them all. Right now I’m taking Cymbalta and Morphine sulfate contin, and I use Lidocaine cream to numb the pain, mainly in my feet. I think I took Nortriptyline, Tegretol, Oxycodone, Capzasin, and others. Acupuncture was suggested but I can’t afford it. Now, since I had a spinal cord stimulator implant, the pain in my feet is around 80% better. Generally, they don’t hurt in the morning, but gradually hurt more as the day progresses.

Jim

Liked by Parus

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@bburleson1

Guess what guys, I have POEMS blood plasma disorder that causes neuropathy in my hands and feet..I’ve found that Vicks Vapor Rub has a lot of uses..

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Hi @johnbishop, do you know the strengths of b1, b6, and b12 that someone should be taking that have Neurppathy.

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Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

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

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

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@johnbishop Thank for sharing this info as so many people do not realize the damage some supplements can cause-even neuropathy.

Kudos for helping to educate others!!!

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@johnbishop

Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

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

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

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Thank you for this extensive research. Have you heard that alcohol (for example, beer and whiskey) is toxic for neuropathy? I have heard that some medical professionals believe it will make neuropathy worse.

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@johnbishop

Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

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

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

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Hi Kevin (@kevinking), yes any alcohol is bad for neuropathy. I used to have a lot in my younger days, but have eliminated it for the past 4 or 5 years.

https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/alcohol/

John

Liked by Parus

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Hmmmm…I have poems, prayers and promises.

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BTW, is there truly any thing that is “good” for neuropathy? I know physical therapy for my knee has really ramped things up…not their problem as I am there for my knee. Even anyone looking at me hurts…3 more weeks to go and my knee is worse and I hear, “no pain, no gain” one more time the bearded face w/ the handlebar moustache may be minus those handlebar curls!!!!

This is out and out cruel and inhumane…I do not have an issue w/ PT…no one believes me. Again on Tuesday and yes, I am doing my homework and I have probably already whined about this. I am miserable and there is not one thing I can do, but go through the bureaucratic hoops…GRRRRR.

Merry Sunshine is behind the dark cloud of neuropathy.

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@johnbishop

Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

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

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

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Hi@johnbishop, thank you so much for doing that research for me. It was vey informative, You deserve 5 stars at least for everything you do to help people.

God Bless

Thanks again….

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@johnbishop

Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

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

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

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John – thank you. after you eliminated alcohol, did you notice any change in symptoms? Kevin

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