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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 1 day ago | Replies (6021)Comment receiving replies
Hi Jim this forum is so helpful. Do you mind if I ask what small fiber neuropathy is? My poly n started with unbearable thumb pain & was shrugged off with probably age, arthritis ect. Next my left leg became unstable @ my left knee & shin pain began. I walk 3-4 miles per day even if it takes all day- concerned about muscle tone. Diagnosis keeps starring at me, looks like it’s real. I thank you for your story, I keep re-reading.
Replies to "Hi Jim this forum is so helpful. Do you mind if I ask what small fiber..."
Hi @fuzzy1southernga, I found a really good YouTube video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that explains the different neuropathies and how they are diagnosed in easy to understand language. Here is a link to the post I shared in the Testing for Neuropathy discussion: https://connect.mayoclinic.org/discussion/testing-for-neuropathy/?pg=1#comment-359974
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My small fiber neuropathy was dx by two biopsies - one in the thigh and one lower in the leg. I started with intense burning in my feet followed by numbness but not numbness to pain unfortunately, just to sensation.. It has traveled up to mid-calf and also in my hands. I have lost sufficient feeling in my hands that I drop things frequently. In addition to SFN I also have Complex Regional Pain Syndrome in both feet and left leg. It is hard to distinguish one from the other. Like Jim, the balls of my feet are very painful but I believe that is the CRPS for me. I have shiny, red skin in my feet as well as edema up to just above my ankles. The balls of my feet are so painful I use a power chair in my house to get around and only shop where there are mart carts. I do have a Boston Scientific stimulator implanted that I keep on 24/7. It works well for my back, legs, and knees and fair for my feet. I do not see a neiurologist, simply haven't had good luck with them. For the past 8 years I have been seeing a pain management doc rather frequently as I have a very painful body. I have RFA done to eliminate my occipital headaches, low back pain, and sciatica problems. They can last for up to two years for me. I hate headaches and am happy I am without for that period of time. I enjoy gardening and try to be as active as I can. It's amazing what pain I can endure just to have some fun, creative time in the yard. I also use Lidoderm pain patches and lidocaine prilocaine cream to help limit pain and when I have had it extended release oxycodone. .Hope this helps you understand some of this stuff. Get back to me if you have questions on anything I wrote about.