1. < Neuropathy
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.

Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 30, 2019

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.

REPLY
manassen1 | @manassen1 | Jul 30, 2019

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

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 31, 2019
In reply to @manassen1 "Hi Colleen, I have PN [Diagnosed as diabetic neuropathy] in both feet and have tried Lyrica..." + (show)
@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

Jump to this post

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

REPLY
Vradi Fegariou | @vradifegari | Jul 31, 2019

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

REPLY
1 reply
Vradi Fegariou | @vradifegari | Jul 31, 2019

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

REPLY
wilcy | @wilcy | Jul 31, 2019
In reply to @medic7054 "Medical Marijuana works VERY well for my neuropathy." + (show)
@medic7054

Medical Marijuana works VERY well for my neuropathy.

Jump to this post

What are you usingTks

REPLY
etipton9756 | @etipton9756 | Jul 31, 2019
In reply to @vradifegari "Hello: I am Cynthia. Nice to meet you all. I have a Poly-Radiculo-Neuropathy. A condition that..." + (show)
@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

Jump to this post

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

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 31, 2019
In reply to @etipton9756 "Cynthia; I'm looking for a MD or specialist who can advise my doctor about the validity..." + (show)
@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

Jump to this post

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/

REPLY
Alma Villarreal | @mrsbv | Jul 31, 2019
In reply to @johnbishop "Hi Alma @mrsbv, There is another discussion here on Connect that I think you may find..." + (show)
@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/

Jump to this post

@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!!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 31, 2019
In reply to @mrsbv "@johnbishop ... Many, many, many THANK YOU's!! 😊 You are truly kind and thoughtful. Bless your..." + (show)
@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!!

Jump to this post

Thank you for the kind words!

REPLY
1 reply
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