Living with Neuropathy - Welcome to the group

My name is Rachel and I live in Saratoga Ca.I have written before but now like to update my life, pain management ,care of a 98 year old husband and my age of 93 with some of my health issues.I had a fusion and laminectomy on my spine about 15 years ago .About ten years after my surgery noticed difficulty stand-in up after sitting for a restaurant meal.I was dx with neuropathy plus osteoporosis and osteoarthritis.Took medication for my osteoporosis for years with pills later injections till I developed side effects.A year ago had surgery on a bulging disc on my back which was successful.I have had many epidurals for pain with no results,Now on Gabapentin 900mg daily which is helping with my neuropathy.I find a pillow under my legs seem to help at night I also take CBD drops on a low dosage at night.I am so glad I ended up seeing a neurologist .After blood work he suggested lowering the high dose of Gabapentin that was suggested by my dr after this last back surgery. My dose now seems to be right and I am less tired and have better balance.I am tx for arthritis pain in both knees.With cortisone shots for several years till my last injection that cause severe knee pain for two weeks.Now I have been told no more cortisone shots but getting another injection.Taking B12 daily also suggested by my neurologist .I will be starting a class ofTranscedental Meditation .You tub has an introduction give by Bob Roth and I suggest it is good for all of us.I know it will help me with daily stress issues.I hope it will help others too.

I am an insulin dependent diabetic for 62 years and have been informed that kidney function is low. Is this the right group for support?

Hi @ejn, Welcome to Connect. I think you might find the following discussions helpful for questions you may have.

-- Diabetics and Kidney Disease: https://connect.mayoclinic.org/discussion/healthy-eating-for-diabetics-with-kidney-disease/
-- Low kidney function: What does it mean? Should I be worried?: https://connect.mayoclinic.org/discussion/diminished-kidney-function/

Has your doctor suggested any diet or lifestyle changes to help with your condition?

Hi everyone, I have had fibromyalgia for 9 years now along with neuropathy for 8 years. I have been on Lyrica for 9 years since before the diagnosis of Neuropathy. However, I was prematurely taken off of it a few years ago completely and then had the dose cut down by two thirds. This actually caused me to go into a withdrawal since I was on the highest dose at the point. I am now currently graduating back up the ladder if you will with it. My current dose 300 mg daily divided into 3 100 mg capsules. I am unsure if it will help because my pain has gotten progressively worse over time, and I am unsure if this dose or another increase will do anything to help with my pain. I am very leery to even consider another drug. My experience with gabapentin and Cymbalta and I did not see any improvement in my symptoms. I am not even sure where to go now in terms of pain meds. I have spinal stenosis which could be making things even worse now. I am now in constant pain and having problems dealing with temperature changes as well. I am considering going the natural route already.

Hi @rely1ngonhelp,

I'm not sure if you have seen the Foundation for Peripheral Neuropathy website but they do have a listing that you can download and print of Complementary and Alternative Treatments for neuropathy -- https://www.foundationforpn.org/treatments/

Have you heard of the Pain Rehabilitation Center? You might find the following post by @rwinney in the Anyone had a successful experience w/ Mayo Pain Rehabilitation Center? discussion helpful - https://connect.mayoclinic.org/comment/690658/

This week's member spotlight features a fellow neuropathy group member @jeffrapp. Read his interview with fellow member @johnbishop to learn more about Jeff, what motivates him, and why he shares his knowledge and experience with neuropathy on Mayo Clinic Connect.

– In arguing, the truth is always lost: Meet @jeffrapp https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/in-arguing-the-truth-is-always-lost-meet-jeffrapp/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

I admire your continuing courage in meeting your health challenges head-on, and persevering until you find a helpful doctor and medication AND meditation solutions. Thanks for your YouTube tip!

Has anyone tried Horizsnt.300 mg?

John,
On the Foundation for PN site in their alternative treatments I found Walkasins for helping balance and gait and preventing falls. A clinical trial was done with them last year. Have you or anyone else had experience with these Walkasins?
Tom Halbrooks

My only experience was listening to a speaker who was part of the design team talk with our Minnesota Neuropathy Association in July of 2017. Here are my notes from the meeting:

“Walkasins Helped Me Walk Again” — Report from a patient with diabetic peripheral neuropathy

Dr Lars Oddsson, who first spoke to us in January 2016 shared the story about Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg.

More information is available on their website: http://rxfunction.com/

John