Living with Neuropathy - Welcome to the group

Hi, I’m wondering if anyone has a balance problem when walking. There are lots of comments on pain etc. But I’m not sure I’ve seen anything about walking and moving around. My case is one of Polyneuropathy with hardly any pain at all. I’m retired but I can’t see how I would be able to work. I need a rolling walker to move around and even with that I get tired fast. The neurologist is sending a occupational therapist to see if I need a motorized wheelchair. Any thoughts?

A balance problem Mr. Jazzman. I guess I do have a balance problem.....I try to be stable and yet I do stagger a lot. Right now I am using a walker after a TKR. I use it or everything. I know that folks who are licensed to practice OT are often also able to re-arrange those tendons and muscles so that you walk in a balanced way.

Shoes make a huge difference. I just fell into Hoka shoes. They are the very best "balance" and walking shoes I have ever had. I chose them for stability. They do that and more. I also do Yoga daily and include a couple of standing balance poses. I think it all helps, especially when you are consistent with your efforts.

Good luck.....and may you have peace and ease. What will you try first?
Chris

Hi @sciscented I believe many people with neuropathy have developed imbalance issues. I am one. I found exercising helps. I have difficulty walking on surfaces that are not level like the lawn or gravel outside. I use a quad cane outdoors. The more walking I did on those surfaces the easier it became for me. On level surfaces I can walk without any device. I am curios why your doctor is sending an occupational therapist. They deal more with upper body verses a physical therapist who deals more with the lower part of the body or ambulatory issues. I started out using a wheelchair. Later, with the help of physical therapists, I followed their exercise program and slowly progressed to a rolling walker and eventually to the quad cane. I too got tired but took many rest periods to get the energy to be persistent. Each time I met a goal I didn’t stop there. I set new goals for myself. I eventually want to be able to walk on uneven surfaces without any device. It takes a lot of ambition. Have you been assessed by a physical therapist? Perhaps he or she can help you with exercises to meet your goals for walking. I would get an assessment first before deciding on an electric scooter. Wish you well.

Like @artscaping, I find balancing poses help me, I do Tai Chi/Qigong exercises. I also do a lot of exercises recommended for numb and painful feet, including walking backwards (safely!). I’ve found this also helps with balance. Like @avmcbellar, I firmly believe that within our specific medical/health limitations it’s important to exercise. I find mornings best, so I walk. It helps me stay fit and positive.

Hi Cathy-
I can't believe I reaad this! I have a toe on my left foot that starts to fire up in the afternoon and is like an ice pick stabbing pain. Up all night and nothing helps. Now this week I have 2 toes on my right foot doing it- I want to amputate them! FYI- I have had ideopathic bilateral neuropathy in both feet for about 10 years. I take 3300 mg gabapentin, cymbalta and klonopin ( 1 mg at night ) . Nothing helps with the toes. Luann

Have you seen a physiatrist?

You might try a vibrating foot board. It could afford relief while reading and watching TV.

Hi @davehayward1, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing a suggestion. Do you use one to help with neuropathy?

I have neuropathy in my feet and legs from Sjogrens as well as degenerative disc disease which causes me to have neck and back pain. I use THC/CBD gummies to help with my pain. This is not medical cannabis, they are not prescribed as I live in a state that only very recently allowed medical cannabis and they haven't set anything up for that yet. I have purchased it at recreational stores in Michigan, Oregon, or Colorado. We used to drive to Colorado every summer to stock up, but now that Michigan has it, we get it there.

I'm not sure what doses they use in medical cannabis. I use 5mg at a time. When I have a bad night, I sometimes take a 5mg gummie in the middle of the night. helps me sleep.

That's a lot of Gabapentin you take! I take only 100 mg of Gabapentin 3x daily. I'm so sorry you have so much Pain! I hope you are close enough to a state that has recreational cannabis, a real help to be able to get it legally, even though in my home state it is still illegal. there are always a lot of older folks in the parking lot when we go. You drive up, call into the shop and give them your parking your spot number, a budtender comes to the car with a menu and you order what you want. You usually have to pay in cash.

Am I terrible to use marijuana, perhaps my rheumatologist would be shocked? It really helps with my pain.

Do you mean psychiatrist ? No, I see a neurologist and a psychologist. Why do you ask?