Living with Neuropathy - Welcome to the group

I was diagnosed with Motor Neuropathy five years ago. I now have hardly any feeling in my legs and feet, and my hands are also becoming very numb. Walking is quite difficult, as I never know where my feet are, and I go off balance very easily and have had several bad falls, one of which caused a broken pelvis. I would just like to know if there are any helpful tips that anyone can give towards dealing with these problems. Obviously I use a stick or walker, and now have an electric scooter which gives me greater freedom, as I am no longer safe to drive myself.

Hello @helenwalker, Welcome to Connect. I also have neuropathy but mine is small fiber peripheral neuropathy and have some balance issues. The neuropathy plus being part of the not so young generation has made walking and balance a little harder for me so I try to be a little extra careful. There are a couple of discussions you might find helpful by learning what others have shared.

-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
-- Peripheral Neuropathy - Stretching and Exercise: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/
-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

A few years back I went to a Minnesota Neuropathy Association meeting and listened to a research scientist who was part of a development team working on a new product called Walkasins that slips on the feet and helps with balance. I think it went into production in 2019 but I'm not positive. Here's more information from the manufacturer on how it works and who might be helped by Walkasins - https://rxfunction.com/

Have you tried any balance exercises or other therapy to help with your balance?

Thank you so much for sending these very helpful videos, I particularly like the exercise one, and am already practising these. I do find walking very difficult now, and my legs feel so 'tight' I have to try not to think about it. Because I never know where my feet are, I tipple over very easily, especially on uneven ground. Anyway, I now have something to work with (thank you) and I will, I am sure, find tis forum very helpful.

Is anyone "up to speed" on the Stage II Trials of Pirenzepine touted as a possible cure for neuropathy including regenerating peripheral nerves?

I was very concerned about gabapentin side effects but to date, no side effects at 900mg a day and adding 100mg every week to 3600mg daily. I believe it is helping reduce the tingling of my feet and lower legs. unfortunately, the PN progresses but with less discomfort I am told. Following WinSanTor trials for pirenzepine touted as a potential reversal of PN as the nerves regrow or so described. Good luck my friend.

I've been a member for a few months but have found it hard to understand how to communicate well. Right now I am on Gabapentin 1800mg daily which is as high as my neurologist will go. I have been referred to pain management. Until then the burning is almost unbearable. Also electric shocks to my toes. I need any and all suggestions. Thank you.

Hi, I’ve just joined. I’m 67 years old, have had neuropathy in my right lower leg since a ruptured disc three years ago, with subsequent surgery for spondelothesis. I’ve had 4 courses of Physical Therapy- to establish and update my Home Exercise Program and for treatment to “normalize gait pattern”. I have weakness in my leg, numbness/tingling in my foot, the start of hammer toes due to the muscle imbalance. PT has made special orthotic shoes which give me a push-off when walking. I went to a University Med School PT Clinic to be evaluated for and to try the “Walkasins”, didn’t work for me due to the reduced feeling in the sole of my foot. My balance is off, I need to concentrate on my gait pattern while taking each step and avoid uneven surfaces (no more walking on the grass or gardening). I have been able to discontinue Gabapentin. I use visualization techniques to short-circuit the feeling of pain, have been very successful. During this time of COVID, I am finding it very discouraging and disheartening to have this “new” me, had a little too much magical thinking that somehow this PN just would go away.

Hi @mcd123, I'm wondering if you might find the following discussion helpful - Mayo Pain Rehabilitation Program where @rwinney has shared this video from Dr. Sletten, Mayo Clinic Pain Rehabilitation Center describing Central Sensitization - https://connect.mayoclinic.org/comment/595133/

Hello @centre, Welcome to Connect. The changes we sometimes have to make to compensate for our neuropathy symptoms and other health conditions can be difficult to say the least. It is great that you have been successful in managing your neuropathy pain without medication. The technique you describe sounds much like neuroplasticity. I'm wondering if you might also find the following discussions helpful.

-- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
-- Amazing website/App in Dealing with Chronic Pain; curablehealth.com: https://connect.mayoclinic.org/discussion/amazing-websiteapp-in-dealing-with-chronic-pain-curablehealth-com/
-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Have you tried any exercises or physical therapy to help with your balance?

Thank-you for the resources, I’ll check them out. PT has added balance exercises to my Home Program and I do all of them faithfully, I have seen improvement (walker to cane to independent but careful). One PT explained to me to remember that the pain message is “false”, there really isn’t a sledge hammer crashing into my leg, that the brain receives the pain signal as an explosive blast, which is not differentiated/localized. Quickly using visualization, for me, quickly short-circuits the pain message. #1- (works best), I think I learned this on the Mayo site, you imagine cutting off your leg above the pain point, taking it over and putting it inside the closet, and firmly shutting the door. #2 I imagine myself in a rowboat, with an angry tornado-like storm nearby and I gently, gently row away.
I found Gabapentin affected my breathing (see side effects), so I had to get off it somehow.
Thank-you for being a mentor, and for your suggestions.