Patient Comments: Peripheral Neuropathy - Symptoms

What were the symptoms of your peripheral neuropathy?

Comment from: Tom, 75 or over Male (Patient) Published: May 01

My peripheral neuropathy started 20 years ago. My first symptom was drop foot, then a feeling of socks on in bed. Next was the loss of nerves in both the arms and legs. I"m now having trouble with balance. I"ve fallen a few times even using a walker. I have tried all the medicines with no help.

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Comment from: aide, 35-44 Male (Patient) Published: May 01

I am 38 years old and been diagnosed with peripheral neuropathy. It started 2 years ago when at night I started to get pins and needles, pain and burning in my hands and feet. This has progressed up into my calves, and I now get numbness, feet and hands go cold as stone, bottom of my back aches, and I get pins and needles most of the day in my back, I went to the doctor and got prescribed gabapentin. This sent me suicidal, and the doctor changed it to duloxetine 30 mg which has worked reasonably well. Although I have had to have the dosage upped it still works, at the moment I am on 80 mg a day and I think it's time to see the doctor again as pain is starting to get to me again. The worst part of this disability is that I get so angry and wound up because the pain never stops and nobody believes how bad it gets but on the plus side I"ve still got a job.

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Comment from: overmedicated, 45-54 Female (Patient) Published: February 11

I have pain from my low back, butt, leg, and foot because of peripheral neuropathy. There is numbness and severe nerve pain all the time. It either feels burning hot, or freezing cold. I have bowel and bladder problems and sexual dysfunction. I took Neurontin for a long time. It made me gain 30 pounds and made it very difficult to think clearly. I weaned off that after 4 years and changed to Cymbalta. I also take morphine. I have a lot of side effects from these drugs.

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Comment from: stillhopefull, 45-54 Female (Patient) Published: January 03

I have had swelling in my legs for years and extreme pain when standing and prickling pain in my legs when I would lay down at night. I thought it was just from being on my feet. Then 6 months ago I started getting tingling in all my fingers and toes at the same time and numbing would run up both legs and arms and I would get such a heavy feeling; like the most intense feeling of "going to sleep" I had ever experienced. It would dissipate after sometime however I would be so fatigued I would sleep for hours. I thought I had back issues. I got so fatigued I lost my voice, have full time care to care for my home, my dogs and myself. At times my right leg will go dead and not take a step. A few times the numbness went as high as my face and I find it hard to swallow and my tongue went into a muscle spasm. I trip constantly. One day while driving it hit my right hand went up and down to my right foot and has never recovered. I can't feel if I have lost a shoe on my travertine floors in my house. It has settled in my hands now and I can't wash my own hair. I also started getting migraines 4 to 5 times a week. One doctor told me it was all in my head. I knew it was not. I received a referral to Stanford. I have been diagnosed with peripheral neuropathy, however I don't have diabetes, have tested negative for autoimmune s and my B12 levels are great. On top of this I have lower back and neck issues which I take medication for. The only option so far is to take more medication but I am 45 years old, own my own business and not working is not an option for me. The pain in my hands and legs/feet during the day is getting so bad and I am not able to sit a lot. I used to be a very fast typist and now it seems I spend most of my day correcting errors and it honestly feels like it has affected my brain. I have also been constipated for many years and that continues but I also find that I am losing control of my bowels and urinary tract. I can't feel 80% of my body, or I feel as if I am being suffocated.

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Comment from: Shelleypete, 45-54 Female (Patient) Published: November 20

A couple of years ago I was admitted to the hospital for my asthma which was inflamed by some type of upper respiratory infection and it was not bronchitis or pneumonia. I was in the hospital for 6 nights. On the 4th night my hands started hurting and I thought I was just being sick or from the medications. Well, it kept getting worse so they checked my blood and found out that I was B12 deficiency so, I was released and my hands and arms were killing me so bad that I did not want even touched. So my husband took me to my family doctor because I was in tears. My family doctor thought it was all in my head. Finally he sent me to a pain clinic and after a year in pain they put me on gabapentin and Flexeril but my arms still hurt so they sent me to a neurosurgeon who ordered an MRI of my neck and EMG of my arms and found out the I had ulnar neuropathy so they did surgery on my arm and it worked for a bit but the more I used my arms in daily activities the more they hurt so they upped my gabapentin to 600mg 3 times a day. Well, it came back and so they did an MRI of my neck and found a really bad herniated disc in my C4 C5 so they fused which almost eliminated my massive migraines and some of my arm and hand pain. Then all of a sudden after a stay in the hospital for my asthma my left arm up to my thumb and fingers where killing me. So, now they upped my gabapentin to 600 mg in the morning, 900 mg at lunch and 600 in the evening and had me start physical therapy but it just aggravated it and the doctor thinks my C5 C6 has herniated but has not ordered an MRI and I really do not want to have another surgery due to issues the last time.

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Peripheral Neuropathy - Experience Question: Please describe your experience with peripheral neuropathy.

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