This post is dedicated to dejerine, who has taught me more about pain and pain management in a year than the medical profession has in 30, and whose humor and keen observations about the lack of real understanding about central pain make me think, laugh and cry, often all at the same time.
There’s an old saying, “You don’t know what you don’t know.“
After living with chronic pain for most of my life, I’m can say with certainty that doctors and researchers have no idea that they’re absolutely clueless about pain and pain management. The reason behind the problem? The doctors and scientists we rely on for help do a terrible job of communicating with us about the problem of pain and the solutions.
Let me illustrate with my story.
In scientific terms, I suffer from two very different kinds of chronic pain: nociceptive and central. Nociceptive pain is the typical kind of pain people feel when their organs, soft tissues, or bones are damaged. Central pain, in the most simplistic terms, occurs when nerves in the brain and spinal cord are damaged. These injured nerves amplify their signals (and drag their healthy neighbors along for the ride), and the brain interprets this barrage of amplified nerve signals as a variety of obnoxious sensations: cold, metallic burning (dysesthesia); stabbing (lancinating); pins and needles; electrical shocks; pressure/swelling; and even itching, to name a few. Spasticity (involuntary muscle spasms and rigidity) are also a form of central pain, although I think of it as a separate symptom.
I was able to cope with my pain (both kinds) and spasticity on my own for almost 20 years. When I finally reached the point at which I needed help, I had no idea how to tell my doctors about how I hurt in “science speak”. But I could do what I thought was the next best thing -- describe exactly what I was feeling. I (naively, as it turned out) assumed that the specialists at the pain management clinic would both want and need to know, in as much detail as possible, what kinds of pain I had, where it hurt, how bad it hurt, how often each kind of pain occurred, how long each type of pain lasted, what triggered the pain (if anything), and finally, what relieved the pain (if anything). Logic dictated that the better my doctors understood what I meant when I said I was in pain, the better they’d be able to come up with treatments that would help me manage it.
The clinic’s intake questionnaire seemed like the perfect opportunity for me to provide the specialists with a record of how pain affected my body and my life. There were page after page filled with questions about the ways in which pain encroached on my ability to sleep, eat, work, and the other activities of every day life. But to my great surprise, there were only a handful of questions about the pain itself. The best opportunity I had to describe the types of pain I was dealing with was rough outline of the front and back of the body.
Although the instructions said only to mark where I felt pain, I went a step beyond by mapping both where I hurt and the kind of pain that affected each area of my body. It took me the better part of an hour to fill in the illustration and create a key that explained what type of pain was represented by each pattern: polka dots represented problems with spasticity and tone even though I already had a Baclofen pump. Left-leaning hash marks indicated (I thought rather cleverly and appropriately) the butcher knife that would randomly plunge into my left shoulder blade and other lancinating pains. Jagged Zs showed where electrical shocks raced through me, while tear drops revealed the acid that pooled just under the skin of my left arm and right leg when anything touched them -- even a tear drop or a puff of air would set me to burn. And a series of squiggles marked the nociceptive pain that plagued me, including the persistent ache in the middle of my back where the side-to-side and front-to-back curvatures of my spine intersected.
The finished product was the most accurate representation of my pain that ever existed. It was also a mess -- there were so many different patterns overlapping in areas like the left shoulder and arm that the drawing appeared to be colored black. (To this day, I can’t help but wish I had taken a set of colored pencils with me that day -- color coding would have been so much easier to distinguish than multiple designs.)
Only one question remained, and I thought the most difficult part of the questionnaire was behind me. Then I read the question.
“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?”
What?!? You have to be kidding. I had no idea how to answer that question.
When you’re in pain, there’s no such thing as a “typical” day. Anything and everything can trigger a flare up -- the wrong clothes, lack of sleep, stress, changes in temperature and/or barometric pressure, having scrambled eggs instead of sunny side up. (I‘m only half-kidding about the eggs. Blending the whites and the yolks with a little water to make them fluffy as they cook has triggered stabbing pains in my shoulder on more than one occasion.) Should I consider today typical, or should I find the average of the highest scores from the last three? seven? ten? days and write that number down?
“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?” Reading it again only made it worse.
At any given time, I’m under siege from multiple types of pain. Which of them am I supposed to measure against that scale -- the worst one? Or should I take the score for each kind of pain I have and come up with an average? Should the average be derived from the “typical” score for all the pains or the highest flare up for each type of pain? Maybe I should give one score for the nerve pain, another for the “regular” kinds of pain, and a third for the spasticity.
I sat and stared at the question for almost five minutes, trying to figure out the answer. Nothing came, so I left it blank.
I spent an hour and fifteen minutes on the pain questionnaire. The pain management specialist never looked at it once -- well, at least not while I was with him. We talked about the tumor, the surgeries and the radiation that caused the damage to my spinal cord. We talked about how the pain affected my sleep and my work. We talked about my expectations for pain management. We talked about how well my Baclofen pump was working.
The only thing we didn’t talk about, except in the most general terms, was the pain.
It’s been the same with every doctor since. Specialist or general practitioner, they all behave as though my pain is a single, homogenous entity. They act as though I can adequately describe how pain affects my life by assigning it a numerical score at a random moment in time. And they prescribe and evaluate the effectiveness of treatments without ever understanding the specifics of the problem.
And we let them.
If we, the people who hurt, ever hope to get the relief we need, we must change the way we talk about pain, and force the doctors and researchers to change, too. Instead of conversations about “the pain”, we need to talk about the burning, the stabbing, the spasms, the pins and needles, and the pressure. We need to insist that our doctors stop talking in general about pain and start talking specifically about the kinds of pain we have and how well -- or poorly -- the treatments they’ve prescribed affect each one. And we need to challenge the scientists who study new treatments to use the most specific definitions of pain possible when they perform their research and evaluate the results.
So let’s talk about pain, baby, just not about “the pain.” They don't know what they don't know, so it's our job to tell them.