Patient Comments: Peripheral Neuropathy - Experience

Please describe your experience with peripheral neuropathy.

Comment from: sillypotato, 75 or over Male (Caregiver) Published: February 22

I am posting for a friend. He has neuropathy in both feet. This affects his balance and he runs into walls. He has found that non-spongy thin shoe soles help. Indoors, he wears medical socks with grip stripes. They work well for balance indoors, better than wearing shoes or slippers. But here is my main reason for writing: He is an outdoor hiker/walker. That can be impossible when you can't feel your feet. He discovered that if he held two 8 ounce fishing weights in just one hand, holding that arm somewhat away from the body, like an outrigger, his body automatically corrects his balance. You can also carry a pound weight in each hand. Another thing that works is to carry a walking stick horizontally in front of you like a tightrope walker's stick. If your stick is too lightweight, tape a fishing weight to each end. Once he realized that his hands automatically corrected his balance, he bought a bicycle. It is a step-through bike, which means that there is no bar between your legs and that the pedals are slightly forward so that when you sit on the seat, your feet rest flat on the ground. His hands on the handlebars automatically correct his balance and even though he can't feel his feet, he can ride a bike just fine. He wears shoes with a hard distinct heel, like a man's wingtip shoe, to help keep his feet on the pedals and he put a weight on the bottom of each pedal to keep it level. If a guy in his 90s can do this, it may be worth a try for you.

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Comment from: Henry, 75 or over Male (Patient) Published: September 21

My peripheral neuropathy started in the year 2000. My feet got very hot and stressed me. When it started to burn I visited the hospital and it was diagnosed that I presented with peripheral neuropathy. I was prescribed with vitamin B and zinc, among other things. In the initial stages I did not mind the warm feet especially in the cold climate of the U.K. winters. The condition of warm feet prevailed for many years and the fall off a chair in London in July 2015 exacerbated my problem and all went awry, as four days after, I presented with a dropped right foot and it was also found after an MRI that I presented with sciatica. My sensory seizure condition which presented in 2011 also worsened and then fibromyalgia reared its ugly head on 28 February 2016. Whether or not this is all related cannot be confirmed by the medical profession in attendance. Back to peripheral neuropathy; this condition has gone north, sock length, and the pain has worsened so much so that I oftentimes would get out of bed and sit and sleep in an easy chair. I started on Trepiline 10 mg and changed to Lyrica 10 increasing to 25 mg. I did not like the side effects. I am now taking Cymgen 60 mg to cover my threefold condition. Now and then I am in remission but it flares up from time to time. I don't think caffeine does me any good, coffee and chocolate.

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Comment from: Jenie, 75 or over Female (Patient) Published: May 26

I have neuropathy in my left arm and hand. This was caused by radiation for breast cancer over 40 years ago. Radiation (the old cobalt kind) caused major scarring in the shoulder and axillary area which destroyed both nerves and arteries. Fortunately, I was able to have vascular surgery to restore blood supply. The peripheral neuropathy is apparently mostly autonomic and non-responsive to pain medication. It, at worst, is an intense burning pain, almost like my hand is on a burning iron. The worst pain was 30 years ago, and after I had done some heavy lifting which I should not have done. My neurosurgeon ordered autonomic nerve blocks. First 2 did little. Third reduced pain by about 50 percent, and that lasted. After that, physical therapy to restore function, and paying attention to weight limitations and not stretching the arm. Things got better. There is almost always some minor pain, but I seem to have learned how to ignore it for the most part, and go on with my life. Sometimes, mostly at night, it seems worse, but usually I can get beyond it and fall asleep. I do find hydration important. It helps. I wish I could say I found a cure, but not true. I have found a place with minimal pain and ability to function, and I am grateful for that. I have loss of function and strength in left hand, but it's a minor problem.

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Comment from: Chelquilts, 65-74 Female (Patient) Published: May 17

I've been diagnosed with peripheral neuropathy for almost a month now. Gabapentin is prescribed, and I find it helps my feet and legs. I need to increase dosage slowly, so am now up to 400 mg a night. Doctor wants to plateau at 500 with 5th pill taken in the afternoon. He also told me some people need to take up to 1800 mg to get relief.

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