Patient Comments: Peripheral Neuropathy - Experience

Please describe your experience with peripheral neuropathy.

Comment from: goldie, 65-74 Male (Patient) Published: June 22

I have found Benadryl cream to help with the shooting pain in hands and feet from peripheral neuropathy. Just apply to the area and repeat until you get relief. I was a long distance runner I should have quit sooner. I am also a 5 way heart bypass and prostate cancer survivor, and not diabetic. Good luck.

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Comment from: mrcpath, 55-64 Male (Patient) Published: February 24

I am a pathologist and myself a victim of this dilemma. Let me be frank, there is no cure for this, only symptom relief, and ease of pain. Your ordinary general physician have not got a clue of what you are talking about when describing peripheral neuropathy and he will most likely only prescribe ordinary painkillers. This is a vast area of darkness and the so called expert a neurologist will 8 times out of ten put it down to just restless legs. Until there are millions of dollars to be made from research, we have to suffer.

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Comment from: Tommy, 55-64 Male (Patient) Published: February 23

My peripheral neuropathy started with feet hurting, then burning and tingling which started moving up my legs. It has now consumed my entire body. Because of it I have had two neck surgeries, three foot surgeries, and possibly my lower back. The medications I have taken have put a tremendous amount of weight on me. Oh, by the way, I am having elbow surgery on Tuesday, the 23rd of February.

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Comment from: Tops, 45-54 Female (Patient) Published: December 22

I have small dense fiber polyneuropathy. I have yet to meet anyone else with this condition. It took many years to be diagnosed as every doctor told me the same thing, 'it is all in your head'. How frustrating and maddening! I have lost use of left arm, really short painful numb nights, and can hardly sleep. No doctor will prescribe anything except Neurontin, which makes me act as if I'm drunk, so I take it every now and again for a pain break. As of now, no research is being done. Doctors say only people with diabetes gets this disease. I don't have diabetes, I walk funny, can't wear flats, clothes burn my skin, and shoes kill my feet. I could go on, but my right hand is wiped.

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Comment from: Joey, 35-44 Male (Patient) Published: November 25

One of the most frustrating problems I have with bilateral neuropathy is explaining the pain to non-sufferers. It is constant. My feet feel like they are wrapped in tin foil that is on fire. Always. I take 2400 mg of gabapentin and 15 mg of Vicodin. Even with the medication, the pain is constant and negatively affects my quality of life. Sleep is difficult. Wearing certain shoes (flip flops) are impossible. Driving is hard because my foot often hits the gas while I'm trying to brake. It is awful, yet nobody really understands it; family, friends and (oddly enough) especially doctors.

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Comment from: Dewberry, 65-74 Male (Patient) Published: September 03

It started with numbness and tingling in my legs and feet (left side worse). Walking was difficult because my balance was affected. I had EMG and MRI in January and was diagnosed with idiopathic neuropathy, although I believe polio as a child may have contributed, or thyroid imbalances in the last 30 years. I have been receiving Immunoglobulin therapy. I just had my 3rd session (5 days each session every 2 months). Side effects are mouth infections, hypertension, migraine type headache, sickness and vomiting, which last 3 days post infusion. Neurologist doesn't believe physiotherapy will be useful.

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Comment from: yoshi g, 45-54 Female (Patient) Published: July 14

I have been suffering peripheral neuropathy for over ten years and it took me about four years to be diagnosed. My doctors made me feel it was in my head but once I was seen by a consultant they diagnosed me. The first couple of years it affected my hands and feet, then over the years my legs, my bladder, and bowel. I had strange pains and spasms. I rely on my partner and now full time caregiver for everything. I feel I have lost any independence I ever had and wish there was a cure or at least more understanding about this condition. Every day I wake up after a terrible night's sleep and have constant pain and wonder if it will ever stop, but it doesn't. When I have really bad months and new symptoms I have to go to new doctors and feel I am getting nowhere and makes me more depressed. I have been on different medicines over the years but not a lot helps. It has changed my life forever. I used to work all my life and now am made to feel bad and a burden on everyone and the state. I think people outside don't know or care about how distressing this illness is. I hope one day they will be able to help all people with neuropathy as they don't do enough for the sufferers out there.

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