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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 17 hours ago | Replies (5950)

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@newzbug

My diagnosis is Generalized Peripheral Neuropathy. I am here because of my neuropathy starting in my feet and moving up my legs. To help my feet, I did some research on sneakers (running shoes) with a wide toe box and added arch support. I have very flat feet. They are orthotic friendly. I currently use Brooks Adrenaline GTS18 in a Women's 11XWide. I love them. Super comfortable, great support. Not too expensive if you are willing to look. I found mine for under 90 dollars. My neuropathy started about 4 years ago after a car accident. I was pretty sure there was nothing they could do for me (based on my own research and reading), but my primary care doctor disagreed with me and recommended a neurologist. Well after she ran blood work and a battery of tests, guess what?! There really is nothing she can do to help me. She can't find a specific cause but recommended extra Vitamin D, and to try some Alpha Lipoic Acid vitamin supplements as there is research to show it can help some people. But according to the nerve conduction test it is also in my arms and legs on BOTH sides. So far, not my torso. But the neurologist will see me every 6months to monitor me. So I take 600 mg of the ALA per day. Can't walk barefoot outside anymore, it's like walking on glass to me. My feet have little feeling in them except occasional pain and burning. I relieve the burning pain by focusing a fan on it at night. Helps a lot. When the burning feels really bad, I soak them in cold water. Feels soooo good. I don't like pain, but I think the numbness is really scary, I can get hurt and not know it till I see the blood or bruise. (And I was put on blood thinners last year for blood clots in my lungs … yikes) Sometimes my feet feel like I am wearing Kleenex boxes on them for shoes. Weird feeling but when they stretch the end of my big toe, feels like it's touching the end of the box. I hope this site will be of some help to me. I just turned 60 and have been having these problems such a short time.

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Replies to "My diagnosis is Generalized Peripheral Neuropathy. I am here because of my neuropathy starting in my..."

@newzbug, Good evening and welcome to connect. We do not have medical credentials. Our medical experience is our own lives e.g. encounters with neuropathy and other afflictions. What is your reaction to the diagnosis? You stated in your post that you know there is no "cure" for any type of neuropathy. Nerves age and struggle to send messages to our muscles. Have you begun to create a daily protocol sheet that tracks the times and doses of your medications?

Sometimes the numbness in the feet becomes a hazard not only for staying balanced but also for having enough feeling in your feet to safely drive a vehicle. I have been conscientiously working on those feet for several years and have found that the only thing that works is consistently is Myofascial Release (MFR), a special kind of massage treatment.

Like you, I have most of my pain in my arms, wrists and hands. I just keep working on the pain and its buddy anxiety. When both of them are coming in loud and clear, and the barometric pressure is under 30......I remain pretty sedentary.

Have you found activities that distract you from the pain and keep the anxiety about the pain under control? Would you feel O.K. about sharing what works for you? I hope you have a restful sleep and can respond tomorrow. Chris