We now pause to bring you a word from our sponsor, the one who makes our story possible: Pain. A word or two about pain will, in fact, be helpful for what’s to come in our story. (For the ten posts already available, see the menu above "A Fire in my Bones.) We all experience physical pain, unless we’re having an extreme reaction to Lidocaine and feel nothing (as I did in 2011, see post #1) or deal with a severe medical problem. In fact, we depend on acute pain for our wellbeing, despite all the macho signs in locker rooms across America encouraging young people to “Play through the Pain” or reminding them “No Pain, No Gain.” Acute pain transmits reliable signals that fade with the healing of an injury or disease, signals that we ignore at our own risk. We may tear ligaments that were only sprained a few minutes ago, rupture an appendix that’s been sending S.O.S. messages for days, or die of a heart attack because we didn’t pay attention to the warning signs written with acute pain.

A world without pain sounds really good. But, in fact, it would be mortally dangerous.  We need acute pain to alert us, to persuade us to stop and seek help. And the inability to feel pain is a serious medical condition: Congenital Insensitivity to Pain (CIP). Those with CIP might bite off the end of their tongue, break their arm, or stand on top of a red ant colony without any awareness of a problem. My friend Gary, may he rest in peace, was paralyzed from the waist down. He loved to swim, even after the day his swim trunks came off in the pool and floated away as he continued to swim laps, unaware of the full moon flashing about in the water. Another day, in the heat of summer, Gary went to the lake to cool off. When he came back to the truck, he pulled himself up into the front seat, and without a thought put his feet on the floor and its broiling hot metal plating. He couldn’t feel a thing, but unless you are paralyzed or have CIP, you wince in pain just thinking about what he should’ve felt—but couldn’t.

In contrast to acute pain that serves an important purpose, chronic pain serves no useful purpose. By definition, chronic pain is any pain that continues or progresses for a long period of time, usually twelve weeks or longer, and includes well-known maladies such as recurring migraines, fibromyalgia, back pain, or pain from nerve damage. An extreme example of unhelpful chronic pain is Complex Regional Pain Syndrome (CRPS, formerly referred to as Reflex Sympathetic Dystrophy or RSD) or Causalgia (literally, “severe burning pain”). CRPS typically develops after a minor injury at the end of a limb, such as a sprained wrist or ankle. The nerves recognize and report the initial pain of the injury, but then go totally berserk. They send more pain signals than the injury warrants and continue sending alerts after the injury is healed. Beyond this point, every case of CRPS is unique; no two patients have the same experience. For some, CRPS pain may not be too bad at first, but with the passage of time it may grow in intensity, scope, and variety of sensations to a point almost beyond belief. What begins as an ache may develop into feelings of electrical shock, spasm, pressure, chill, or burning—which over time may grow into a deep ache, electrical explosions, epic earthquakes, throbbing pressure, Arctic cold, or a raging forest fire. As the pain intensifies, it may also radiate upward from the foot into the calf and knee (or further), or from the hand into the forearm and elbow (or further), as if the confusion spreads from one nerve cell to the next. And worse, no one knows why the nerves are confused or if the pain will stop spreading.

At the extreme, some CRPS patients experience allodynia: the affected nerves become ultra-sensitive to touch. The sensations of a light breeze, sound vibrations, water in a shower, or even clothes are exaggerated and reported as burning pain, harsh pressure, or unbearable irritation. Once, I was waiting just outside of surgery when the patient on the other side of the curtain suddenly screamed in pain. And then, still screaming, said, “Don’t you see the words on my arm? Don’t you see Do Not Touch!?” The nurse had apparently lifted her arm or tried to get a pulse, which had set off unimaginable pain for the patient, who continued to unload the pain onto the nurse. I was a bit surprised, not by the patient but by the nurse. Patients with allodynia often use a permanent marker to write, “Do Not Touch” on the affected area (I can’t imagine how much it must hurt the patient to write this warning).

So far, my description of CRPS may seem somewhat rational: nerves lose their bearings, continue to grow more confused, and influence those around them. For some patients, however, CRPS becomes totally irrational and makes no sense at all. The pain may become “bilateral”—jumping from one hand to the other so that both hands burn with pain, and then jump from the hands into the feet. Beyond this point, experiences vary so much that it’s best to turn the pen over to a person who knows firsthand what this disease is capable of doing. This is how “Les,” a Facebook friend, has described his symptoms over a series of posts and personal notes:

My RSD has spread to all four extremities now. It is also affecting my skin, eyes, and many other areas… When I have flares, it’s full body burning, spasms, swelling, deep bone pain… the feeling of things crawling all through my legs, fire and ice symptoms from restricted blood flow… the sweating, the weakness, the nausea, the tremors, feeling like I have the flu.

Les suffers from the worst manifestation of CRPS that I’ve ever heard of. Frankly, I’m not sure how it could get worse. With his description, and even in weaker forms, CRPS takes its place at the top of the McGill Pain Index Chart—above bone cancer, the amputation of a digit (finger or toe), childbirth, chronic back pain, and even bone fractures. So it’s less surprising to hear this little-known malady sometimes called “The Suicide Disease.” The depression that accompanies long-term unrelenting pain, isolation from friends, the inability to work, and the pain itself causes patients with CRPS to be at a high risk of taking their own lives.

For all cases of CRPS, chronic pain is the problem, not a symptom of another problem. And without an understanding of the cause or cure, the goal of treatment is to lessen or control the pain by any means possible, frequently with large doses of opiates such as hydrocodone and morphine which are simply not very effective for nerve pain. Ultimately, as Les and others know all too well, it is impossible to control nerves confused by CRPS. The pain comes, stays, and spreads as it pleases and there is nothing that can be done to stop it. And worst of all, this chronic pain serves no good purpose. Absolutely nothing is wrong, despite the never-ending alerts racing through the nervous system.

And now, with a smile on our faces, we take you back to your regularly scheduled program…

—to be continued—

Excerpt from a working manuscript, A Fire in My Bones: A Memoir of Life with CRPS (copyright Glenn Pemberton).