I managed to miss RA Warrior Kelly Young’s blog carnival about the pain scales doctors use to assess our pain and how effective they are, but I’d like to put my two cents worth in, anyway:
Imagine—or recall, since we’ve all experienced this at one time or another—a dull headache. Think about how that headache influences your day: You continue to interact courteously with others as your day and your headache progress, but each interaction—normally effortless—requires your full attention. The headache is distracting, too. It prevents you from focusing the way you’d like to on each task. You begin to get frustrated.
As time passes, the dull pain in your head doesn’t get worse, but its steady persistence starts to wear you down. You think more and more often about the pain and how you’d really like it to go away. You wonder why the Tylenol you took for the headache isn’t working and whether if it would be safe to take more, or perhaps to take something else, something stronger. You decide not to take the risk, but the decision makes you feel hopeless.
The way you deal with others—family members, co-workers—starts to suffer. Your pain now colors everything, and you get cranky and critical in spite of yourself. Worse, the headache is now causing other parts of your body to react. Your neck and shoulders stiffen up. You’re hungry, but you feel a little nauseous. Your eyes feel hot.
Somehow, you’ve made it through the lunch hour. The headache remains: it’s still a dull, throbbing, un-ignorable presence in your skull. Now you find yourself constantly checking the clock, longing for the moment you can stop for the day. Though you’ve stayed doggedly busy, you haven’t been able to accomplish nearly as much as you’d planned, thanks to this miserable headache. You wonder if it’s maybe, actually, a brain tumor. Maybe you should see the doctor. Even if it’s not a brain tumor, maybe she’ll prescribe something that will actually work so the headache will go away! You check your schedule. You’ll have to defer a couple of tasks, sure, to go to the doc, but the hope of beating the headache overrides your caution. You’ll just work harder and catch up tomorrow, when the damned thing is gone. You call the doctor’s office for an appointment. And to your relief, they can work you in today if you get there as soon as possible.
You arrive at the clinic. The nurse calls you in to have your blood pressure and temperature taken. That done—and both are perfectly normal—he asks why you’ve come to see the doctor today. You tell him about the dull headache that won’t go away. He nods, jots something on your chart, and asks, “On a scale of one to ten, what number would you rate your pain?”
You hesitate. At this very moment, your first answer would be a forceful “10!” You’re perfectly miserable and have been all day! The thing is, though, you’ve had worse headaches than this one. You’ve had headaches that, in retrospect, you’d rate as eighters or niners. If you’re honest, this dull headache isn’t even close to an eight or a nine. In fact, it’s probably closer to a five. But if you choose “five,” that number doesn’t take into account how stiff and sore your neck is, now, does it? You remember the way the doctor blew you off the last time you came in to see her. You don’t want her to think you’re exaggerating your pain; she obviously did that last time.
“Um,” you say weakly, “a three.”
The nurse writes the number down, takes you to an exam room and leaves you to wait for the doctor. Your head feels like it’s going to explode. Why did you say “three” when this pain is obviously a bloody 10? Why are you embarrassed? Is your pain a three or a ten? How can you even answer that stupid pain-scale question?
So. The above is all about a regular, garden-style but persistent headache. Now imagine that you have rheumatoid arthritis, and it’s not your head that has that dull headache, but your hands. Or your right knee. Or your left shoulder. How about your jaw? Or one of the many joints in your right foot? Or your ankle? Or maybe the “headache” is all over your body, making you feel as if you’ve been battered like a tennis shoe in an all-night clothes-dryer. You’re miserable and desperate to somehow get the pain to stop, because even though you can’t honestly rate it more than a “three” on a scale of one to 10, after enduring it for most of the day, it feels like it’s a 12.
And if you tell the doctor that, he’ll think you’re exaggerating wildly. When you ask for pain relief, he’ll think you’re drug-seeking. If you were him, given your normal stats, you’d think that, too.
But you are drug-seeking! You desperately want him to prescribe something that will, without delay, make your pain go away. For good. But if you tell him how you really feel (12 going on 15 on a scale of one to 10), he’s not going to give it to you, you junkie! If you under-rate the pain, he’s going to give you a prescription for Tylenol and act like you’ve wasted his time. Which you have—both his and yours, since you already know Tylenol won’t work.
Sigh. Pain scales. They’re too subjective to be very useful, but I understand why doctors use them. They need some way of understanding their patient’s pain levels so they can treat them successfully. But somehow, someone needs to come up with a better scale. I’m afraid I don’t have any answers, but I absolutely relate to the problem. I have headaches in my hands all the time. Some days are worse than others, but no matter how hard I try to ignore them, they sometimes color my otherwise rosy view sludgy and gray. Like a dull headache, the pain in my hands, while initially not high on the pain scale, gets worse as the day passes so that the pain I’d initially rate as a “three” is a “ten,” in my perception, by the time I see a doctor.
Please don’t forget to visit RA Warrior to read other RA blogger’s takes on the ubiquitous pain scale. They’re all excellent.
Note: Edited to correct the silly misspelling of “purgatory” in the title. Heh.