Patient Comments: Peripheral Neuropathy - Experience

Please describe your experience with peripheral neuropathy.

Comment from: Stephanie, 45-54 (Patient) Published: March 19

I have had idiopathic neuropathy for 9 years (starting when I was 35). The burning in my feet and legs feels like I am being burned alive. I have tried everything available, natural and prescribed, without much help. I can no longer work, shower for very long, exercise, or walk more than a few steps at a time. The doctors have given up trying to help me. The chronic pain rules my life.

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Comment from: joan, 65-74 Female (Patient) Published: January 23

I have nerve damage in both feet, the pain and numbness are bad enough but I can't stand the stiffness. It started right after I retired a year ago. It seems better when I'm walking. I remember I had a ruptured disc years ago, thought maybe that could have caused it. Neurontin is no help.

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Comment from: HAMMER, 75 or over Male (Patient) Published: January 17

I have peripheral neuropathy in both feet and both legs. I had a nerve conduction test that verified it as nerve damage. My doctor prescribed Lyrica 300mg, 100mg three times a day. It works pretty well during the day, but when I lay down in bed at night I have excruciating pain in my toes and balls of my feet. I am not able to sleep. Each Lyrica dose lasts for about four to five hours, so it's not enough to last all day. My doctor prescribed hydrocodone once a day at night to help me sleep and ease the pain. I was advised by a friend who is a pharmacist to ask my doctor if I can take Nucynta 100mg three times a day as it might work better than the Lyrica. I haven't done this yet.

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Comment from: Hope, 45-54 Female (Patient) Published: October 31

I have symmetrical neuropathy and abnormal nerve conduction in both legs. I had pain in my back , hips, groin area, and knees and elbows. I had pain in my legs and feet, fatigue and depression. I had on omeprazole or ranitidine for GERD. I had anemia last year, after three neurologists saying I had nothing. I took it to research by myself. I found out that all this neuropsychiatric symptoms can be brought up by b12 deficiency. I had myself tested and even after having had massive oral doses my B12 count was low. I am presently receiving shots and showing hopeful improvement.

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Comment from: Rozaro, 75 or over Female (Patient) Published: October 15

I have had peripheral neuropathy for several years. I was put on Gabapentin (neurontin), in January. My leg pain (cold fire) was greatly relieved. After four months I developed crying/laughing storms, and swollen tongue and throat and I stopped. Doctors have not been able to stop the swelling. I cannot speak plainly, nor can I swallow normal sized food or pills. I am still seeking a 'cure'.

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Comment from: Rock in Pain, 55-64 Female (Patient) Published: February 04

I'm sitting here crying because of peripheral neuropathy. After three years of constant pain, four doctors, painful feet injections finally I have some answers! The pain is so intense some days I feel I could just pass out! Nobody understands, and nobody believes me. The constant feet pain, any cold brings me to tears! I am in so much pain, and my pain doctor won't even give me pain medication. So I just sit home in constant pain! I am glad to know there are other people who have this debilitating disease, so now I know I'm not going crazy!

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Comment from: bl curtis, 45-54 Female (Patient) Published: October 26

I have had neuropathy in my feet for years and it is getting worse. The only thing that makes it better is 2 tramadol and 3 tablets of 400 mg gabapentin in the morning and at night. I fight with the doctors every month to fill my prescription and then somehow they mess it up and I end up not having enough or any of either and go weeks with just gabapentin and it doesnt work. Right now it has been two weeks, and I keep getting the same story. The doctor will be in next week. I don't know if they think I am just taking the medication for the buzz or what. I am in pain and I cannot walk sometimes.

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Peripheral Neuropathy - Symptoms Question: What were the symptoms of your peripheral neuropathy?

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