Here’s an article at NPR that gives advice on talking to doctors about pain. It questions the usefulness of the old tried-and-true 1-10 pain scale and comes down in favor of more descriptive words.

It’s not that I disagree entirely; it’s just that my experience as a chronic pain patient (which I was for about 15 years) taught me some different lessons.

If you’re interested in my story, I’ve written about it previously in many posts, some of which can be found here. Right now I’ll just say that I was in fairly severe chronic nerve pain for well over a decade and saw countless doctors from many disciplines (in particular, orthopedists, neurosurgeons, neurologists, and physical medicine and/or chronic pain specialists). I still have some chronic pain but if I’m careful with certain limits I’ve established, it’s of a minor variety. But much of the time during all those years it was very major, and I often despaired that it would ever get significantly better. The improvement began as a result of a surgery that most doctors thought would not help me, but which one of the world’s finest elbow surgeons was willing to perform on me.

These are some of the things I learned during those fifteen years about talking to doctors on the topic of pain (pain specialists were an exception; they generally—although not always—tended to do significantly better than the others, as one might expect since pain was their bailiwick).

Nearly every time I went to a doctor’s office I was required to fill out that 1-10 pain scale. For the most part, most doctors never seemed to even have looked at it and never referred to it or wanted to talk much about it. Often the examinations and discussions were extremely cursory due to time constraints.

I also usually had to fill out a chart and put Xs and Os and various other marks on a picture of the human body in order to show the sites of my pain and the quality of pain involved at each site (burning, stabbing, electric, etc.). I almost never got any hint from the doctors that they had looked at those, either, although they did seem to know my general situation (back injury plus arm injuries).

Sometimes I was asked to circle descriptive words as well (words are suggested in the article I highlighted today). Ditto; no attention was paid to that either. And one of the things that used to drive me somewhat nuts was that, despite all that information, doctors continually referred to my pain as “numbness.”

Now I ask you: is pain numbness?

Whenever doctors would say point to some part of my body and say something like, “The numbness you report here…” I would respond by telling them it wasn’t numbness, it was pain. Often it was burning pain. Sometimes other kinds of pain. Sometimes disordered sensations of various kinds. But I had no numbness. A common response on their part was to say something like “Pain, numbness; it’s all the same neurologically.”

Now, I understood that they meant—or at least I thought I understood that they meant—that pain and numbness are sensory nerve sensations and deficits and disorders, as opposed to motor nerve problems such as weakness or foot drop or reduction in grip strength or muscle wasting (I had the latter two in my arms and hands). But pain and numbness are certainly not the same to the patient, and a patient with a significant pain component to his or her complaints (and I certainly had that) is not going to be happy when the doctor calls his/her pain “numbness.”

I felt like taking a hatpin out of my purse (no, I don’t really carry hatpins), jabbing the doctor with it, and asking how that numbness felt. This was something like what doctors did regularly to my feet and arms, going up and down with a little pin, and I always could feel the sharpness so that they already knew (or should have known) from that that numbness was not one of my complaints. But it didn’t seem to penetrate to most of them.

That doesn’t mean that some of my doctors weren’t good doctors or weren’t trying to be helpful. Some were, some weren’t. In the end, I found a couple of extremely good and helpful doctors (neither of whom ever made the numbness-is-the-same-as-pain error), such as Dr. David Roos of Colorado, who guided me, and Dr. Frank Jobe of Los Angeles, who supervised my arm surgery. They are both deceased now, but I owe them a great deal. RIP, Drs. Roos and Jobe, and thank you.

[NOTE: This post was originally on my older blog and had comments, but unfortunately the comments didn’t transfer over here.]