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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@rzobeck1

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 .

Jump to this post

Hi Randy. The adjustments I've made in the past few years relate to keeping safe and maintaining a positive attitude. I have both sensory and motor PN which lends itself to poor balance. Adjustments such as using a cane when needed and I fought the idea of using one for quite some time. I also cut back on sugar intake to the point I've lost 10 lbs since September (intentional) just by reducing sugar. I have increased my hours of sleep each night, rest is good for PN. I was always a person on the go and now, I don't push it. In my mid 70's, I try to make sure I don't burn up too much energy in the morning hours, so I have energy later into the day as well. Best to you!

REPLY
@maryv449

I do not know why someone would try to bully you. You are in pain and you are seeking help, you seem like a sweet person. Do NOT listen to some idiot, report them to the moderator. How dare they do that. We are here to help each other not mock or bully. Good luck in your quest. I am finding relief and would be glad to tell you all about it, if you are interested.

Jump to this post

Yes. My pain has gotten worse over the past few months. The pain is in my legs burning and cramping. Now I’m seeing bruises.

REPLY
@hburley50

Yes. My pain has gotten worse over the past few months. The pain is in my legs burning and cramping. Now I’m seeing bruises.

Jump to this post

Hello @hburley50, Welcome to Connect. If I read your previous posts correctly, you've tried spinal injections, gabapentin, naproxen and tizanidine but you only have relief for a short period of time. Can you share more about your diagnosis?

REPLY
@lvgal

Very informative to read the connections between alcohol use and neuopathy. I am 85 and until 10 years ago only drank occasionally - once a month or even less . At the loss of my husband of 42 years, I increased the alcohol use to daily. At that time, I had the diagnosis of ideopathic peripheral neuropathy in both feet, but was driving with no issues. I began to observe occasional situations where my foot would slip off the pedals and it alarmed me enough that I stopped driving. I also began to notice balance issues . My doctor added the use of a rolling walker due to the many falls I was experiencing. A few years ago, I started to see a physical therapist for treatment which seemed to help my balance. A month ago, I was diagnosed with venous insufficiency on both legs and now wear support hose. NO one questioned me regarding alcohol use other than the cursory "how many drins a week" question which I honestly answered, I have also have all Covid and flu shots. I had COVID in 2020 and again in 2024. Pretty sick the first time and less so the second time.

Jump to this post

Interesting, Ivgal, in that I am an 85-year-old Wisconsin male where alcohol is so ingrained in our culture that we are blinded to its ill effects. It's toxic to the human body, yet warnings are muted because the industry lobby is so strong (parallel to the NRA keeping gun control muted). I had an alcoholic father so I was quite aware of how bad extreme use was so "having a few beers at the end of the work day" seemed pretty normal and harmless. Excluding some pretty heavy beer drinking in college, having a beer or two (maybe 3 or 4 when company called) was my guide. No tavern sitting, no weekend binges, and certainly no booze hidden around the house! Imagine my surprise at age 75 when a new doctor, upon hearing of my drinking history of drinking 6-8 beers a week, wrote down "alcohol dependent!" (The doctor was not from Wisconsin!) I was diagnosed with peripheral neuropathy caused by long-term use of alcohol. Later neurological tests confirmed the diagnosis. While I quit alcohol use immediately, the numbness has progressed (no pain and no impact on balance) to mid-calf with the intensity lessened with daily doses of super vitamin B-complex and 300 mg R-Lipolic Acid (with Biotin optimizer). With my doctor's approval, I have just started a monthly trial of 10,000 mcg (10 mg) of Biotin.

REPLY

Hi, what a nice welcome! I’m writing for my husband who has PN without much pain, thankfully but does have the progressive numbness in his legs. That is his main concern. We’re getting tired of the scans but just looking for anything that might work. Thanks for listening.

REPLY
Please sign in or register to post a reply.