About 3 years ago I began to have tingling and a feeling of numbness in the big toe on my left foot. This went on for a short period of time and then I started noticing that it felt like a sock was wadded up under each of my feet when I stood on them or walked. I would check, but the socks would be fine. Then, both of my feet started hurting a lot -- they would feel numb and tingly along with burning and freezing sensations, and sharp stabbing pains in my toes and ankles, and on the tops of my feet at the same time. My feet virtually felt like pincushions with thousands of pins and needles stabbing them. It felt like I was walking on ground glass and hot lava --. Walking barefoot on a hard flat surface causes extreme pain.
Eventually, my hands started tingling but as of yet, haven't progressed to the kind of pain I have in my feet.
My primary care physician sent me to three different types of doctors (a podiatrist, a neurologist, and a pain treatment physician) who did extensive testing, as well as to try to find some kind of pain relief for me. I tried a number of different medications, but nothing has helped. Cymbalta, an anti-depressant my doctor prescribed for me did give some relief, but I was unable to take it after trying it twice because I had severe reactions both times. Another drug, Lyrica also provided some relief but caused me to break out in huge spontaneous bruises all over my body. There were huge lumps under the skin where the bruising was. I looked like a dalmation with purple spots that would eventually turn yellow and green and brown before they faded away.
I recently tried a temporary Spinal Cord Stimulator. I had a portable system with part of a lead wire inserted in my back near my spinal column and the other part connected to a programmed transmitting device. I used it for 3 days but didn't get any noticable pain relief. I went to see my doctor to ask him if I could keep it for 2 more days and he agreed. A representative from the company who makes the SCS was there to re-program the transmitter so the stimulation (stim) would reach my feet. After many adjustments he entered 2 programs for me to use and see which if any would be helpful. Here's what happened:
When we got home I plugged the lead into the transmitter and turned it on. ZAP!!! :eek: I just about got knocked across the kitchen floor from the jolt, and the stimulation that followed felt like I was standing on a live wire in the water! I hit the 'off' button as fast as I possibly could, and had to sit down so I wouldn't fall down. I thought maybe the amplitude needed to be lowered so I turned it on again and ZAP!!! I got shocked again! Instead of turning it off, I leaned my head forward because doing so causes the stimulation to stop at once. Any kind of body movement will either increase the stimulation, decrease it, or stop it altogether because the lead wire isn't secured to any tissue inside my back where it was implanted, and when the body moves, the lead moves too. If the lead makes contact with the spinal cord, stimulation is the result. If the lead moves away from the spinal cord, stimulation stops. Okay, I turn it off again and wait a while until I get comfy in my Lazy Boy RockerRecliner. This time I lean my head forward before I turn it on so I can adjust the amplitude without getting zapped. It worked. I turned it on without getting jolted then decreased the amp. to as low as it would go and slowly raised my head to straighten out my spinal cord. I got absolutely no stim at all so I began to increase the amp. and as soon as I touched the + button, ZAP!!! Ohhh boy. . . I played with it a few more times then gave it up. I turned it off and left it off. I didn't call Jason because only he or another ANS Rep. could program it and I could only increase or decrease the amp which is for comfort level.
When I went to see my doctor again, I told him all that had happened and that I wanted the lead removed and that I decided to not have a system permanently implanted. He suggested that in a month or so, if I wanted to try it again, he would use two leads instead of one, and use a different SCS company. He explained how two leads would provide more accurate coverage and would be more precisely programmed, or whatever. . . I'll have to give it some careful consideration before I agree to another trial.
Has anyone had an experience like this? :confused: Has anyone been successfully treated for peripheral neuropathy, and if so, with what? My quality of life is zero (with the exception of seeing a therapist for depression, and using my computer to be online, to do everything that I can't do that requires socks, shoes, and walking) because I cannot be up and around on my feet for more than a few minutes at a time. It's too excruciatingly painful. Sorry this is so long but I really need feedback if anyone can help.