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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.

fala | @fala | Dec 2, 2022
In reply to @eep "I have extreme neuropathy. I can't balance, on my feet, the pain goes up my legs..." + (show)
@eep

I have extreme neuropathy. I can't balance, on my feet, the pain goes up my legs to my knees. My legs feel like logs. They are cold in the morning. I get shooting electric pains shooting into my legs. These pains have been getting stronger, and now I get them on the bottom of my toes. My hands are numb most of the time, and I can't pick up things, and I drop things all the time. My colon feels like it's clogged. I used to have small pencil size, bowl movements. now they are more like mush. I feel like my colon is clogged. I don't know what to do. My doctor told me when I was diagnosed that there was no cure for me. I have felt like I've been dying for the last few years. I refuse to go back to him, he was a jerk. I am currently away from home for the next 5 months. Last year I fell and broke my femur, had surgery, and fell again, and broke the same femur in a different place. The surgeries have made my neuropathy spread quickly. I'm afraid to have any surgery.

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Hi, I just want to address one thing. Every time I had to change medications or diet for high Blood Pressure my constipation would show its ugliness. My daughter who is in the Medical Field, turned me on to Colon Max. I have only found it online, but it is a natural product that REALLY works. The amount, either one or two capsules can solve that bowel problem.
Good Luck!!

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roslyn | @roslyn | Dec 3, 2022
In reply to @johnbishop "What's helped me walk (when the weather is nice!) is a set of lightweight trekking poles...." + (show)
@johnbishop

What's helped me walk (when the weather is nice!) is a set of lightweight trekking poles. They also help with my balance issues when walking.

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Thanks. He has those poles.

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mack43 | @mack43 | Dec 3, 2022
In reply to @johnbishop "What's helped me walk (when the weather is nice!) is a set of lightweight trekking poles...." + (show)
@johnbishop

What's helped me walk (when the weather is nice!) is a set of lightweight trekking poles. They also help with my balance issues when walking.

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I agree! I have a set of trekking poles. They help tremendously with posture, balance, and proper walking form. I get used to neighbors saying, "Where is the snow?"

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mikaylar | @mikaylar | Dec 3, 2022
In reply to @sueinmn "Maybe you don't need a new doctor, but the right therapist? I can't put my fingers..." + (show)
@sueinmn

Maybe you don't need a new doctor, but the right therapist?
I can't put my fingers on the post right now, so I'll repeat. After a long-time imbalance in the body, we gradually begin to walk differently. After years of limping on bad hips, followed by more limping due to failed implants, I had terrible back pain and one of the new hips always hurt.
My very diligent ortho determined that hips and back were not the problem, my uneven walking was. He referred my to a PT clinic that specializes in getting people walking after severe injury, stroke or amputation.
After analyzing my walk, I was put through a course of gait training, similar to what is described in this article https://www.verywellhealth.com/gait-training-in-physical-therapy-5069884
Therapy was twice a week to begin, with a series of exercises to be done twice daily at home. At first we did much of it in a therapeutic pool, because walking was so hard. After 2 months I graduated to a home and pool exercise program for a total of 6 months. It was a LOT of work, but 10 years later, I'm still doing pretty well and I only limp when my knees hurt. Not everyone will have such good results, but it is worth a try to get your life back.

Let me know what your doc thinks of the idea.
Sue

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Lifts in your shoe?

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glp1340122 | @glp1340122 | Dec 3, 2022

I have heard gabapentin (sp) is a good med to relieve the discomfort of neuropathy. Does anyone have a suggestion for daily dosage?

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1 reply
grannymary7077 | @grannymary7077 | Dec 3, 2022

Hi Colleen, I'm Mary and have just been diagnosed with neuropathy. I had apparently had it for several years with tingling that only bothered me at night, but now that I have burning pain in my toes all the time, I have an official diagnosis. I am going to read through other posts on this site looking for topical creams that will help the burning pain. I am 85 and take so many other prescription meds that my doctor wants me to avoid more prescription meds as long as possible. I'm looking forward to learning more about what I can do to help myself.

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4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 3, 2022
In reply to @grannymary7077 "Hi Colleen, I'm Mary and have just been diagnosed with neuropathy. I had apparently had it..." + (show)
@grannymary7077

Hi Colleen, I'm Mary and have just been diagnosed with neuropathy. I had apparently had it for several years with tingling that only bothered me at night, but now that I have burning pain in my toes all the time, I have an official diagnosis. I am going to read through other posts on this site looking for topical creams that will help the burning pain. I am 85 and take so many other prescription meds that my doctor wants me to avoid more prescription meds as long as possible. I'm looking forward to learning more about what I can do to help myself.

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Hello @grannymary7077, Welcome to Connect. I'm sorry to hear you were just diagnosed with neuropathy. It can be a challenge at times depending on how bad the symptoms are. You mentioned wanting to avoid more prescription meds as long as possible. The Foundation for Peripheral Neuropathy has a list of complementary and alternative treatments that you might find helpful here - https://www.foundationforpn.org/treatments/. The site also has some useful information and tips and living well with neuropathy here - https://www.foundationforpn.org/living-well/.

There is another discussion you might find helpful by learning what other members have shared here:
-- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/

Have you done any research on alternative treatments that might help?

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1 reply
grannymary7077 | @grannymary7077 | Dec 3, 2022
In reply to @johnbishop "Hello @grannymary7077, Welcome to Connect. I'm sorry to hear you were just diagnosed with neuropathy. It..." + (show)
@johnbishop

Hello @grannymary7077, Welcome to Connect. I'm sorry to hear you were just diagnosed with neuropathy. It can be a challenge at times depending on how bad the symptoms are. You mentioned wanting to avoid more prescription meds as long as possible. The Foundation for Peripheral Neuropathy has a list of complementary and alternative treatments that you might find helpful here - https://www.foundationforpn.org/treatments/. The site also has some useful information and tips and living well with neuropathy here - https://www.foundationforpn.org/living-well/.

There is another discussion you might find helpful by learning what other members have shared here:
-- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/

Have you done any research on alternative treatments that might help?

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Hi John, I had already read almost everything that looked like it applied to me from the website in your first link and just read most of the information from the website in your second link. I started with all the ideas for topical creams from Vicks VapoRub to Bio Freeze to Hemp cream. I already have 5% Lidocaine and just ordered the others from Amazon. My doctor said it might help to switch among them. I copied the brands of shoes that were mentioned but haven't looked into them yet. I already own some soft diabetic socks but ordered more. I read the list of alternative medicine options but want to try the creams first. My toes were really burning this afternoon, and Amazon benefited. I hope I benefit too.
Mary

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Leonard | @jakedduck1 | Dec 3, 2022
In reply to @glp1340122 "I have heard gabapentin (sp) is a good med to relieve the discomfort of neuropathy. Does..." + (show)
@glp1340122

I have heard gabapentin (sp) is a good med to relieve the discomfort of neuropathy. Does anyone have a suggestion for daily dosage?

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The dosage of Gabapentin depends on the individual.
I’ve read here where people have taken from 100 mg to 3,600 mg. I knew of a man who took 7,000 mg. 3,600 mg is the recommended daily maximum although some people take more. Some doctors don’t give more than 900 mg others think 1,800 should be the maximum needed for Neurophy relief. It’s dependent on your doctor, yourself and your side effects if any. Gabapentin usually has fewer side effects than other anticonvulsant drugs. Gabapentin isn't a very strong seizure medication. The man I knew who took 7,000 mg a day for neuropathy got no relief until he reached 7,000 mg, and then he got substantial relief. Many researchers believe doctors don’t prescribe high enough doses to receive the relief needed. I know my brother took it and when he got to 2,400 mg he noticed slight improvement and when he got to 3,600 mg his improvement was considerably better. I took 3,600 mg but it had no effect on my neuropathy or my seizures.
Best of luck,
Jake

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