Living with neuropathy

No one, unless they have been there, can explain what it's like to be in pain 24/7. When I began researching a neuropathy feature for our summer issue, I have to concede that I had a couple of personal reasons for wanting to do the story: my right foot and my left foot. Since 1999, my feet have hurt. Is this a late effect of chemotherapy? No, says one expert. Yes, says another. I was treated before it was known that certain drugs can cause neuropathy, but after meeting Diana DeVoe and writing a story about her in 2011, I began to reconsider. She had had some serious chemotherapy to treat her sarcoma, with some of the agents on the list of bad actors when it comes to neuropathy. She also has some spine issues that could be part of the reason she developed the condition. According to Diana, one of the drugs I took could cause neuropathy. It all left me wondering. More than what caused my burning feet, I wanted to know how to stop the pain. I tried Cymbalta even before it was found to be effective for severe pain--but it wasn't for me. I tried anti-inflammatory drugs. And I had seen an orthopedic who suggested it was tarsal tunnel syndrome--the foot version of carpal tunnel syndrome that affects the wrist. I had surgery on one foot that accomplished nothing except to make my foot wider and rule out tarsal tunnel. Beginning in 2000, I did the rounds every few years to see if anyone knew anything else, and, of course, I kept an eye on studies here at CURE. Nothing. The last time I underwent testing that determined I had neuropathy, the doctor sent me to a neurologist, who entered the room and asked why I was there. "My feet hurt," I said. "Stand up," he said. When I did he asked me to close my eyes and then bring my fingers together in the front. When I did he said he didn't know why I was there and he couldn't do anything for me. I took an opiate for one summer while teaching in London, where I had to walk--a lot. It didn't help and just made me grumpy. Finally, a pain doctor in New York City who I had come to know well prescribed low-dose methadone. It worked well enough to allow me to think about other things than my feet when I needed to, and I have been on it a number of years at this point. And no, I am not worried about becoming addicted. For those of you who don't want to take pain medication because you are worried about become addicted, listen to me: The receptors for pain are different than the receptors for addiction. Those of us who take pain medication (unless you already are predisposed to addiction) take the drugs to function. Addicts take the drugs so they don't have to function. Big difference. The challenge with taking methodone for the first few years was getting a prescription filled in Texas. My oncologist filled it at first and then said there were now some pain specialists who could help. That was around 2008. It took me six months to find a pain doc, and then it took me another six months to find another pain doc when the first one told me I had to be drug tested every time I went in to see him--at a cost of $3,000. If you read the summer issue of CURE and the story on neuropathy, you'll know that Michael Stubblefield is the guru on neuropathy, and his logic that those of us who have neuropathy are predisposed to it in some way makes sense to me. I don't know why I have neuropathy, but I can remember bringing my dad a hot water foot soak every night when he came home from work. It's clear his feet hurt, too, but he never talked about it. In the past six months, my feet have worsened, and I am back on the path of trying to find a solution. I am excited that a new drug based on the toxin of the puffer fish will soon be available. When it is, I'll let you know if it works. If you have figured out something for your neuropathy, share it with us in comments or on Facebook. And join CURE for a Facebook chat about neuropathy on July 9, when Michael Stubblefield will be joining us.