Every Day, I Live My Life in Pain

In 1982, at the age of 31, I was diagnosed with a small-fiber length-dependent sensory peripheral neuropathy. Despite extensive laboratory assessments (including genome sequencing), the cause is unknown. Most patients with small-fiber peripheral neuropathies do not have an identifiable cause. When the diagnosis was first made 40 years ago, I was told the disorder would be progressive, but I did not know what that might mean.

At first, the neuropathy was emotionally scary, but not physically discomforting. I could not discern temperature or pinpricks in my feet, and when I touched things, my hands and feet would tingle. It was uncomfortable to keep my shoes on for long periods. Friends would notice that I would take my shoes off whenever I sat down, and they would give me a hard time about it. But life went on.

With the passage of years, the neuropathy progressed, as was predicted. The sensory loss became more profound, and my feet and ankles felt numb all the time. I felt I was wearing socks, even when I wasn’t. I developed spontaneous uncontrollable agonizing cramping in my toes, feet, calves, and hands, and the spasms required a concerted physical effort to “break” them apart. Then, autonomic imbalances emerged and took their toll. It is hard to keep my balance, and with the loss of proprioception, I would never trust myself to walk any distance in the dark.

And then, for several years now, there is pain.

Waves of sharp “coldness” or “burning” in my feet. Lancinating pain. A thousand cuts. The unpleasant sensations were episodic at first, and then they became more frequent and longer in duration, lasting hours or days. And even when the pain stopped, I could still remember it, and I feared its return.

At any given moment, it was hard to tell if I was “feeling pain” or if I was having a “memory of feeling pain.” As the two experiences began to merge, if I was having pain only intermittently, I was afraid of having pain all the time. Could I still tell the difference between the pain and the fear it generated?

My physicians assured me they could mitigate the pain. I was told there were many drugs that had proved useful for the discomfort caused by small-fiber sensory peripheral neuropathies. I tried pregabalin, and it worked for a while, but it no longer does. I read positive things about duloxetine, but I could not tolerate it, despite a half-dozen serious attempts. The discussion with physicians never moved to tricyclics or narcotics. If these options had been proposed, I had planned on saying no, but I was not exceptionally confident that my resolve would hold. I am praying that no one brings up the possibility of using them in the future.

What was the worst part of the experience? Because of my fears, my world was becoming more and more narrow. The fear generated by the memory of pain made me choose not to do things that I loved because I feared the pain might be intolerable. Or more accurately, I fooled myself into believing that — to keep the pain at bay — I needed to concentrate on it every single minute, when (in fact) by doing so, I achieved precisely the opposite effect. When my professional activities were insufficient to distract me, I went to sleep to seek an alternative universe, since (for some strange reason) I did not suffer from neuropathy in my dreams. I prayed that — once banished by the night — my neuropathy might have resolved by the morning. But that profound wish was never fulfilled.

A month ago, my son invited me to visit him in Brooklyn for a few days. I was not sure I was up for making the trip, but I did. He whipped me out of bed early, and he and I walked miles and miles around the borough. Fifteen languages and seven different cuisines over the course of 14 hours. Real bagels with gravlax. Hot lobster rolls. Asian food to die for. Swirled soft ice cream on a cone. And we watched the sun set at Brooklyn Bridge Park, feasting our eyes on the waves of the East River lapping against the shore, with the southern tip of Manhattan as the backdrop.

At the end of the day, my son asked: “How was your neuropathy today?”

Startled, I was speechless. (I am not speechless very often). I had not talked about my pain or the neuropathy the entire day. When memories of it would periodically encroach on my consciousness, my son seemed to take notice that he was losing me. And he immediately focused my attention on something else. During most of the day, my neuropathy had become a more distant memory. Or to be far more accurate, my son filled my head with new memories, primarily for the purpose of displacing the ones that were paralyzing me.

I was bewildered and confused. Was this a mind trick? Did my son seek to distract me from the real world of my neuropathy? Or did he simply want to reintroduce me to the real world where my neuropathy would play a very small role?

A few days later, I discovered that Haider Warraich, MD, had just published a new book, The Song of Our Scars: The Untold Story of Pain. Warraich is a heart failure cardiologist, so we have known each other for years. He has an incredible ability to write compelling articles for lay audiences. But why would a heart failure cardiologist write about pain? An entire book about pain? And why should anyone care?

People should care because this is an important book. Based on his personal experiences with chronic pain supplemented by substantial historical, cultural, and scientific study, Warraich proposes that “acute pain” and “chronic pain” are distinct entities. Acute pain arises in the periphery and flows towards the central nervous system. In contrast, chronic pain arises in the brain and seethes to the site of perceived discomfort. According to Warraich, “chronic pain resembles more of a memory than a physical sensation.”

The distinction is important. Both physical sensations and memories are exceptionally real. But they originate in different places in the nervous system, and they have different time constants. Physical sensations tend to be brief — and our appreciation of them wanes, even if the sensory stimulation persists. In contrast, memories are exceptionally durable, even when their physical origin has unequivocally disappeared.

If chronic pain is a form of memory, then it may be subject to retraining. Specialists have been working on this; it is called “pain reprocessing therapy.” And in a randomized trial published fairly recently in JAMA Psychiatry, pain reprocessing therapy had striking benefits in patients with chronic back pain. After 1 year, two-thirds of patients randomized to pain reprocessing were pain-free compared with only 10-20% of patients randomized to placebo or usual care.

If “pain reprocessing therapy” seems arcane or out-of-reach for most people with chronic pain, Warraich has important advice. The best treatment for chronic pain, he believes, is to focus on things that bring you joy in life. Chronic pain narrows your field of focus, forcing your brain to concentrate on the pain, thus invariably making it important and scary. Focusing on the joys in life broadens your focus and helps your brain reconceptualize pain as being due to non-dangerous brain activity rather than actual peripheral tissue injury.

It is like spending a day in Brooklyn. Even more than 60 years after the Dodgers left.

Those who are fans of Dune will remember the famed encounter between the book’s protagonist, Paul Atreides, and Gaius Helen Mohiam, the Reverend Mother of the Bene Gesserit, an exclusive sisterhood of women who guide the course of the universe. To test Paul for his worthiness, the Reverend Mother compels him to place his hand in a small box, and immediately after he does, she positions a poisonous dagger at his neck and explains: “The test is simple. Remove your hand from the box and you die.” He asks: “What’s in the box?” She responds: “Pain.” How much pain can he withstand?

But in truth, the test is not really about “pain.” Rather, it is about fear. Fortunately, Paul has already learned: “I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain.”

A person who fears constantly dies a thousand deaths. Those who let fear pass through them die only once.

The reframing of pain as non-dangerous brain activity is not easy, and I have not achieved it. I have great empathy for the millions who are paralyzed with fear, and my brain still seems determined to narrow my universe. But I understand my chronic pain better than I did a few weeks ago, and it now makes more sense to me. That understanding provides comfort, and I am less afraid.

In case you were wondering, I am booking my next trip to Brooklyn. The bagels there are really extraordinary.