Living with Neuropathy - Welcome to the group

Hi, I developed a condition called erythromelalgia mid COVID. Spent a year on the medical merry go round diagnosing. Along with the condition I also deal with neuropathy, mostly when I have my feet elevated because of the erythromelalgia. I have found that trying to eliminate sugar as best I can, along with a compound of amitriptyline and ketamine applied twice daily has helped immensely.
Thanks for listening

I am a type 2 diabetic and I have peripheral neuropathy and also in my hands. I need info on how to slow it down. It’s up to my knees and getting worse. I cry a lot wondering when I’ll be in a wheelchair.

Hello,
My name is Paul Partridge and am 76 years old. My neuropathy started with 2 ruptured discs about 6 years ago. I had successful surgery and the neuropathy was much improved, but then 2.5 years ago I was diagnosed with cancer of the ureter. I had successful surgery but was not give any adjuvant therapy. March 2022 I was told the cancer was in my bladder and thru the wall with a tumor on the outside of the bladder. Since then I've had chemo and immunitherapy in 2023 and chemo and radiation in 2024. I am currently in remission but my neuropathy worsened and now use a cane for balance and had to quit driving.

My neuropathy is from my knees to my feet and some in my fingers. The fingers have improved and hoping they return to normal. I also have type diabetes which is treated with Metformin.

Type 2 diabetes.

Hello @kimmykat and @paul76, Welcome to Connect. You are not alone and I'm sure you will find a lot of encouragement here on Connect. It sounds like you may have neuropathy possibly caused by your diabetes condition. There is another discussion you might find helpful.

-- Diabetic Neuropathy. Long Acting medication to help regulate sugar…
https://connect.mayoclinic.org/discussion/diabetic-neuropathy-long-acting-medicationto-help-regulate-sugar/
The Foundation for Peripheral Neuropathy has a couple of webinars that I think you will find helpful on their YouTube Channel (https://www.youtube.com/@foundationforperipheralneu4122/).
-- FPN Webinar Demystifying Diabetic Peripheral Neuropathy with Rodica Pop Busui, MD, PhD: https://www.youtube.com/watch?v=WAzI0mK4cyk
-- FPN Webinar: A Holistic Approach to Diabetic Peripheral Neuropathy: https://youtu.be/pauUH7k9ZJI

Has your doctor suggested any treatments to help with your neuropathy symptoms?

Yes it’s from my type 2 diabetes- but I had a spasm in my left leg that tightened up and I was in the worst pain ever in the ER 3 years ago and my leg never released the nerves. So they are dead. Then before I had surgery on my back they offered me a shot in my back to try and alleviate the nerves- all it did was make my blood pressure spike which made my sugar spike and deadened my right leg. (Prednisone). My blood pressure has a lot to do with it. Yes I’m on Metformin and Gabepentin and hydrochlorithiazide for my diabetes. Dilthiazem for my blood pressure. I spike up and down daily. It’s a struggle.

Hi I am Randy Z and I am 65 and trying to find what others are doing. What kind of adjustments have you done if i might ask. I am planning on cutting out sugar as much as possible. I am possibly pre diabetic. Thank you for any help .

Hello Randy @rzobeck1, Welcome to Connect. I shared my neuropathy journey in another discussion here along with many other members - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/. Good for you on cutting back on sugar. It's a good start for eating healthier. I wished I would have paid attention to sugar intake earlier in my life as I was always labelled a prediabetic also and my doctors didn't mention the metabolic syndrome and it's connection with neuropathy. Here are a few references if you want to learn more about it.

-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
Another good site for learning more about neuropathy and what helps is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

While you wait for other members to share, I thought you might like to scan through the discussions and comments from members on "neuropathy what helps". Here's a link to the search results - https://connect.mayoclinic.org/search/?search=neuropathy+what+helps

What neuropathy symptoms bother you the most?

Hi,
Cutting down on sugar is best and not going head first into sugar substitutes as many contain Aspertame. Also consider that most manufactured off the shelf foods contain sugar, sugar substitutes or salt, I prefer to stick with raw and fresh foods with anything else in moderation, if I must. Drinking water not sodas or natural juices, all loaded with added or natural sugars far beyond any normal requirement. A glass of natural orange juice contains around 6 squeezed oranges, you're better to peeling an orange.
You get used to reading labels and understanding the jargon, then putting it back on the shelf.
Cheers