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Peripheral Neuropathy in Feet
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Shelian posted:
Second time trying to post this..... Mama 12, I am 24 and have Small Fiber Neuropathy, a form of Peripheral Neuropathy. In most cases of Peripheral Neuropathy the only way to diagnose is to rule out everything else. Unfortunately, this is what happened in my case. I was back and forth to different doctors for almost 3 years, most of which implied the pain was all in my head, until finally I saw a Neurologist. He discovered I had less temperature sensation in my feet, ankles, and lower legs. In other words, I can take extremely hot baths and the water feels cool or simply warm to my lower extremities. I also had a constant, dull, burning pain that started in my feet and ankles, now reaching up as far as my thighs and hips sometimes. After exercise, long periods of standing or walking, or carrying extra weight, it begins tingling and eventually goes completely numb.....usually just to my knees but more and more often up to my thighs and hips. The only good thing about everything going numb is that I get a break from the pain. I had X-rays, MRI, EMG, Nerve conduction tests, and blood work......all of which came back overall negative ( I had some inflammation, but not enough to be arthritis). Because of my symptoms and what results the Neurologist did find he diagnosed me with Small Fiber Neuropathy. He then prescribed me Lyrica and almost immediately after the first week I started to notice a difference. That basically was a guarantee to the Neurologist that I definitely had some sort of Nerve damage and due to the results the only thing left was Peripheral Neuropathy. He mentioned that a Skin Biopsy was about the only test that could give a possible positive, but even it is not a guarantee and it's quite painful so he decided to not give it to me. After family, friends, and coworkers doubts that anything was wrong, I was just happy to finally get a diagnosis that fit. Eventually the Neurologist prescribed me Cymbalta because the side effects of Lyrica would interfere with work and driving......basically made me feel and react like I was drunk. Unfortunately, Cymbalta didn't do anything for me, and I mean it literally was as if I hadn't taken anything at all. Neurologist said that each person reacts differently to different pain medications. "What helps one person may not phase another." So I'm back on Lyrica, but I only take it at night or in extreme episodes of pain. I hope this helps!
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Shelian responded:
By the way......mine is Idiopathic, cause is unknown...... It is possible that yours is caused by your Fibromyalgia.
 
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Lifes responded:
I'm sorry it took 3 yrs for you to be diagnosed. But it doesn't surprise me. Drs do not realize just how common & how painful neuropathy is. They often tell pts or imply that they are "crazy" or "just stressed".

Everyone does react differently to the meds. You might mention Trileptal to the Dr. It has much less drowsiness. For ME though, I have a couple hours a day when my heart pounds harder, usually about 2 hours after the dose. And before the dose is due I have swooshing in my ears. But, I can function during the day. It is also only 2x a day, versus multiple daily doses on Neurontin. Most insurances cover it too.

Have you read www.neuropathy.org ?

Lifes
 
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Shelian responded:
Yeah.....it was very frustrating and stressful not knowing what was wrong. But now I have a diagnosis! I'm waiting for the VA to decide whether to give me disability.....this began and progressed while I was in the military, probably one of the worst places to be with Neuropathy. The Neurologist I saw thought that the Small Fiber Neuropathy was caused by the constant impact on my body from the military.....like the men who drill into roads get it in their hands from constant vibration and hitting from the drill. I'm using the medication I have left sparingly because I can't afford insurance on myself or more Dr. bills; otherwise I just deal with it......but thanks for your suggestions. Maybe if I get disability from VA I will discuss with VA Dr. I looked at www.neuropathy.org and it has great information.....thanks.

Shelian
 
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NancyClagg responded:
I too am sorry that it took 3 years for your diagnosis. I was fortunate enough to be referred to a Neurologist right off the bat and have been fighting an extremely painful peripheral neuropathy for the past 10 years, combined with dizziness, unsteady gate and other problems associated therewith. I did undergo a sural nerve biopsy which indicated that both myelin and axonal involvement. The neuropathy has since spread from my toes to my hands, almost 3/4 of my body. I moved to Phoenix with the hope that their medical practioners are more cutting edge than what I had experienced in the midwest. I'll have to let you know how that turns out. For now, with my last appointment it was agreed that the only course of treatment was mega doses Neurontin (Lyrica was not tolerated well), combined with massive doses of pain killers and topped off with antidepressants. Even with such treatment I am in extreme pain, can barely walk on my bad days, which are coming more and more frequent, I can no longer work in my profession as a paralegal. It is extremely frustrating that there is little else they can do. Time to explore other avenues.

Nancy


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