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?

@arcticmark

Hi Justin,

My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.

I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.

I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."

These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?

Many thanks!

Mark

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I’m there with you! Very very hard. One time got out of my car had a 90 year old look at me they thought I was intoxicated. Looked like they were going to call the police on me. No I wasn’t.!!! I have no balance and I was trying to walk on my feet when I can’t feel them. I know they are there because I feel extreme pain that’s it! Arm’s and hand’s worse. Head, Feels like I’m wearing a hat I can’t take off the hat and my Head is always itching. Hard to keep my head up it’s so heavy etc…you found the group.

Liked by Leonard, rwinney

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I was diagnosed 20 years ago and was put immediately on Neurontin (Gabapentin). I titrated up to 6X300 mg capsules nightly and have followed that successfully since. Now my MD has 'lost' his knowledge of the prescription and cannot find empirical evidence that Neurontin is appropriate for Per Neur. Does anybody know of a licensed specialist in Minnesota that can advise him? My original guy was a neurologist who later retired and died.

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Hi @etipton9756 I wanted to join @johnbishop and @jakedduck1 in welcoming you to Connect. You may have noticed I moved your post to this welcome discussion for those living with neuropathy so that you can connect with others with similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

I would like to re-emphasize the search tool John suggested from the Foundation for Peripheral Neuropathy's website:
https://www.foundationforpn.org/living-well/neurologist-directory/

How is your personal search going in finding a neurologist?

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@ethanmcconkey

Hi @etipton9756 I wanted to join @johnbishop and @jakedduck1 in welcoming you to Connect. You may have noticed I moved your post to this welcome discussion for those living with neuropathy so that you can connect with others with similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

I would like to re-emphasize the search tool John suggested from the Foundation for Peripheral Neuropathy's website:
https://www.foundationforpn.org/living-well/neurologist-directory/

How is your personal search going in finding a neurologist?

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Have gone to 3 with no luck!

Liked by Leonard

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@vradifegari — Thank you for the private message on the use of Garlic for pain. I thought I would answer your private message here so that others may benefit from the discussion. I have not heard of using Garlic for pain so it's something I might try if I had chronic pain. I did a little searching and found some information that may be helpful for others thinking of wanting to try something natural to see if helps.

NIH – Garlic: a review of potential therapeutic effects
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103721/

Here's Why You Should Start Your Day With Raw Garlic And Water
https://food.ndtv.com/food-drinks/heres-why-you-should-start-your-day-with-raw-garlic-and-water-1832623

“Garlic Milk” Is A New Trend That Could Make Your Back Feel Amazing
https://soyummy.com/garlic-milk-new-trend-serious-health-benefits/

8 Foods to Ease Your Aches: A Pain-Fighting Menu | Senior Planet
https://seniorplanet.org/8-foods-to-ease-your-aches-a-pain-fighting-menu/

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OMG Mark! I am all over that and will gladly join in on your discussion!!! My PN is head to toe as well and what you say resonates with me.

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Hi Colleen,
I have PN [Diagnosed as diabetic neuropathy] in both feet and have tried Lyrica without much success.
A 20% improvement but not worth the side effects.
My blood sugars are between 5.5 and 8.5 with the help of a 1000mg nightly dose of Metformin.
Question…Has anyone tried "ozone" injections or is anyone familiar with them?
I visited an alternative medicine clinic and thought I would check with the Mayo before undertaking anything.
I live in Sydney Australia. The Doctor's name is Dulitsky and he has a website for reference.
Any thoughts or experience?
Many Thx,
Roy Manassen

Liked by Alma Villarreal

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@manassen1

Hi Colleen,
I have PN [Diagnosed as diabetic neuropathy] in both feet and have tried Lyrica without much success.
A 20% improvement but not worth the side effects.
My blood sugars are between 5.5 and 8.5 with the help of a 1000mg nightly dose of Metformin.
Question…Has anyone tried "ozone" injections or is anyone familiar with them?
I visited an alternative medicine clinic and thought I would check with the Mayo before undertaking anything.
I live in Sydney Australia. The Doctor's name is Dulitsky and he has a website for reference.
Any thoughts or experience?
Many Thx,
Roy Manassen

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Hi Roy @manassen1 — Here is some information on ozone injections while we wait for other members who can hopefully share their experience.

NIH – Ozone therapy: A clinical review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312702/

Medical News Today – What is ozone therapy? Benefits and risks
https://www.medicalnewstoday.com/articles/320759.php

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Hello:
I am Cynthia. Nice to meet you all.

I have a Poly-Radiculo-Neuropathy. A condition that give me crisis of acute pain since my coxis to my lumbar, dorsal, cervical spine connecting with my head, face teeth, shoulders, chest, ribs, arms, and hands. I have pain all the time. I have taken Gabapentine and then Carbamazepine. I cannot be setting for much time, or resting in bed, or stay on foot. I cannot sustain a heavy book in my hands because of the pain. To sleep is very painful.

To write using hands is almost imposible. Tendons around wrist get hard the muscles next to elbow contracts. The fingers get hard too and I have troubles to close the hands. And if when pain started getting stronger I keep writting longer then the pain tooks my shoulders, cervical and omoplates, making my hole arms not usables. I am searching another treatment for this neurological pain. It cannot contain Opium derivates, cause I am allergic.

A new study shows I also have a bifida spine and it seams I have a reumatological condition. I have thyroid cysts and suprarrnal (kidney glands) disorder named Low cortisol syndrome-no Addison.

I was an Early Music student. I was learning to play Early Harps.
I will thank your advices

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I have just out of my last crisis. I am better. I am trying to follow the natural approach. Vitamins, minerals, healthy diet, walking and some soft Qi Gong routines.
Some friends in Neuropathy group mention Vit D3, Magnesium salts, nightshades, air and foam cushions. Myself I am taking Espirel (Spirulina Plantensis) and Garlic. Let´s see.
True be told the pain is always there. So, your advices are very welcoming.
Best regards,
Cynthia

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@medic7054

Medical Marijuana works VERY well for my neuropathy.

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What are you usingTks

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@vradifegari

Hello:
I am Cynthia. Nice to meet you all.

I have a Poly-Radiculo-Neuropathy. A condition that give me crisis of acute pain since my coxis to my lumbar, dorsal, cervical spine connecting with my head, face teeth, shoulders, chest, ribs, arms, and hands. I have pain all the time. I have taken Gabapentine and then Carbamazepine. I cannot be setting for much time, or resting in bed, or stay on foot. I cannot sustain a heavy book in my hands because of the pain. To sleep is very painful.

To write using hands is almost imposible. Tendons around wrist get hard the muscles next to elbow contracts. The fingers get hard too and I have troubles to close the hands. And if when pain started getting stronger I keep writting longer then the pain tooks my shoulders, cervical and omoplates, making my hole arms not usables. I am searching another treatment for this neurological pain. It cannot contain Opium derivates, cause I am allergic.

A new study shows I also have a bifida spine and it seams I have a reumatological condition. I have thyroid cysts and suprarrnal (kidney glands) disorder named Low cortisol syndrome-no Addison.

I was an Early Music student. I was learning to play Early Harps.
I will thank your advices

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Cynthia; I'm looking for a MD or specialist who can advise my doctor about the validity of Gabapetin for PN. Could you provide his/her name and contact info?

Eddie Tipton

Liked by Alma Villarreal

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@etipton9756

Cynthia; I'm looking for a MD or specialist who can advise my doctor about the validity of Gabapetin for PN. Could you provide his/her name and contact info?

Eddie Tipton

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Here's a search tool for finding a neurologist in your area on the Foundation for Peripheral Neuropathy's website:
https://www.foundationforpn.org/living-well/neurologist-directory/

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@johnbishop

Hi Alma @mrsbv, There is another discussion here on Connect that I think you may find helpful and may offer an alternative therapy to treat your pain.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@johnbishop … Many, many, many THANK YOU's!! 😊 You are truly kind and thoughtful. Bless your caring, compassion and empathetic heart! ❤ You have helped me many times. You are clearly an inspiration to me…and I am sure many others! 🏆 Thank you!!

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@mrsbv

@johnbishop … Many, many, many THANK YOU's!! 😊 You are truly kind and thoughtful. Bless your caring, compassion and empathetic heart! ❤ You have helped me many times. You are clearly an inspiration to me…and I am sure many others! 🏆 Thank you!!

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Thank you for the kind words!

Liked by rwinney

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