Pain-scale purgatory

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.

Sigh.

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.

14 responses to “Pain-scale purgatory

  1. I have a headache now in every single joint and now my tendons and muscles. Pain scales are just (in my opinion) justification for doctors to cover their backends. Yup, that is Murphy’s law take on it all…smile here. Why you ask am I so cynical on pain scales. Because even if and when you say ten, what might you be prescribed…an OTC, an anti inflammatory, or perhaps tramadol mixed with pregnisone on the side. In this country we have a terrible view on narcotic pain medications all together. We as true pain patients have for years been mixed in like a pot of soup with all the other ingredients out there including drug seekers. Now, why can’t a doctor tell the difference between a drug seeker and true in need pain patient. Ummmm…maybe they should read the medical records for a starter. If one has been clinically diagnosed with say ra (though there are hundreds of other painful chronic conditions that need true pain treatment), why wouldn’t a doctor prescribe narcotic pain meds if this patient has taken almost every darn known drug out there to treat the disease? It is a question of pain treatment overall. A big discussion and with patients at the forefront of this discussion, needs to take place in this country. I can’t speak for other countries but ours is having a massive disconnect on too many common sense approach things lately. It is truly a sad state of affairs indeed. One can take all pain scales and flush them down the deep abyss in my humble opinion. How about a good old face to face conversation with your patient? Now that is an innovative approach :-)

    • You’re so right, Deb. It’s frustrating and even insulting to be considered a fraudulent drug-seeker while trying to get relief from the awful pain of rheumatoid arthritis. My own rheumatologist does work with me, face-to-face, and he’s one of those compassionate doctors who believes that it’s just as important to treat the pain RA causes as it is to treat the disease itself. There have been times in the past, however, that I’ve had to endure that grimace of disbelief from other doctors, ones who didn’t know me and didn’t have my medical records. Because of the many, many people who do fraudulently seek narcotic pain relievers there’ve been times when I’ve been given less-than-effective medications in response to my request for pain relief.
      It’s my hope that because of bloggers like you, me, RA Warrior and others who deal daily with chronic pain, the medical community WILL be more inclined to look into the issue of adequate pain relief. There has to be a way.
      Thanks for your comment, Deb. I hope that you’re taking care of yourself as you get through this current full-body flare. And I hope it eases off soon.

  2. I know what you mean about those pain scales. When I walk out of my doctor’s office, the nurse will ask to see the prescriptions he has written. Apparently, they have to keep track of strong pain medications. I have been fortunate that my pain has been tolerable and even when it isn’t, I do my best to manage it on my own. I figure that there will be a time when my RA is much worse and I will need strong pain meds. For now, I do the best with what I have. However, you are right about minimizing pain and I, too, I do it. When the doctor suggests something I take something strong, I tell him no. I am, just like many, afraid of the label associated with taking pain meds. Right now, I have a prescription for muscle relaxer that I take as needed (for the neck and back injuries from the auto accident many months ago) and it took a lot of convincing from the doctor for me to take it. I wonder if I took it when I first had the accident if I would have gotten better by know. Who knows? It is like we fake it until we make it and we keep trying until we are defeated. That’s when we finally give in. I finally gave in. :-) If that makes me appear drug seeking, I tried not to appear as such. I really did. :-)

    • Hi, Lana! Thanks for commenting! I totally agree that it’s wrong and sad that we understate our pain so we won’t sound like we’re drug-seeking–especially since our pain is absolutely real and often devastating. I also understand why you try not to take the strong pain relievers unless you really feel like you’re about to die–we all fear the day that the strong drugs no longer work so well because our brains have gotten used to them.

      All that said, I’m glad you finally broke down and took the meds your doc prescribed for your neck and back injuries. Suffering that sort of pain when you don’t have to can only do you harm. Hooray that you “gave in!”

      I hope this finds you feeling well today–or at least, as well as a person with kids, a job, rheumatoid arthritis and fibromyalgia and auto-accident injuries CAN feel at any given moment. Be kind to yourself, okay? Hugs for you.

  3. It amazes me that those who really need the relief can be misjudged — at times harshly. Having to assess one’s pain is frustrating, especially when the pressure is on to make it count, or suffer as a result of either your own fears and apprehension to quantify and/or disclose, or because of some form of miscommunication.

    Ah, yes, SIGH…

    Thanks Wren for your thoughts in the form of very-pleasing prose! :)

  4. Hey, Thrive! Thank YOU for commenting. It’s uncomfortable to be under the lights, having to justify your need for narcotic pain relievers–especially when you have RA and pain is one of the major symptoms of the disease. And playing down our need for pain relief only makes everything worse.
    With luck, and in time, perhaps this sort of misunderstanding will become a thing of the past.
    I hope this finds you feeling good and not in need of pain relief. Best wishes to you and yours.

  5. Good post, Wren. As you point out, the pain scale is ridiculous. Every person’s perception of pain is so different that we can’t possibly agree on what a 10 is, let alone then scale everything else back proportionately from there.

    What’s worse is that medical providers who insist on a number don’t usually ask what our 10 is to have any basis of comparison. When I went into the hospital (sorry, you’re probably tired of hearing about it), I rated my pain around a 7-8. Two days later when I was coherent enough to realize that there was treatment plan info on the white-board in my room, I saw that someone had said my *target* pain level was a 7. What idiot determined that I didn’t need to feel any better than the horrid pain that landed me there in the first place?! Obviously there are serious problems with such an arbitrary scale. Maybe we should all write down what our scale is so that the doctor/nurse asking knows our frame of reference.

    • Now, THAT’S a great idea, Socks. Every RA patient should create her/his own pain scale for their doctor’s education and their own use–and make sure the doc knows that as the patient experiences more pain over time, the scale is subject to change.
      I, for one, haven’t gotten tired of hearing what happened when you were in the hospital, Socks. Your experience there obviously had a real impact in your life and on how you deal with your doctors, etc. Even the most ignorant hospital worker, though, HAD to know that a seven on a pain scale of one to 10, 10 being the worst pain you’ve ever had, wasn’t any sort of positive goal. Sheesh. Incredible.
      Thanks for the comment and the compliment, Socks. Hope this finds you feeling well.

  6. Pingback: Quantifying Pain « ∞ itis

  7. Plenty of healthcare professionals also have a problem with the 1-10 pain scale and it is now increasingly common for the faces version used for children to be used for “normal” adults (in the UK at least). Part of the problem is that pain can’t be seen and everything else is often exaggerated compared with years ago. I used to have a parallel problem when I went to the doctor. I had had an excellent relationship with our PCP when I lived in Germany with small daughters both of whom had asthma. We both knew the pattern of the attacks and when I arrived to see him he knew I had done my part and waiting before turning out to see him.They were then treated promptly and within hours were improving dramatically. On my return to the UK we had no history notes and I was treated like all the others – I knew nothing about their illness. When I arrived I would be sent home to wait it out and by the time they would listen to me the girls were in the middle of a severe attack that kept them in bed and off school for anything up to 3 weeks. That had never happened before. The final straw was when I took a child with difficulty in breathing late afternoon and was told there was nothing wrong with her – the next morning she was pretty blue about the lips and I demanded an emergency out of hours visit. THEN she got the abx she always needed eventually – no apology.

    Those of us who know our disease and problems are often ignored by docs not familiar enough with us or our disease – because after all they haven’t walked in our shoes. It seems a shame all healthcare professionals don’t have to spend a few weeks with the levels of pain/disability their patients experience. They did do a TV programme in the UK where medical students were dressed in a special suit that mimics the stiff joints and clumsiness of old age/rheumatic diseases and sent out amongst the public to see how the elderly and handicapped are subjected to being ignored and abused because they are “in the way”, slowing things up. The insights expressed were very revealing. Pain is a bit more difficult to replicate though.

  8. Coincidentaly, I have just read a post from early November over at “Those Emergency Blues”. About the need for effective pain relief and it not being given/reasons – written by a nurse who couldn’t face asking for the pain relief she needed because of the labelling given by others. Go read.

  9. Wren, I just wanted to say, I love this post, it’s the one I related to the most out of all the pain scale posts. I do the same thing, underestimating my pain as I don’t want to look like a drug seeking hypochondriac. The way you described the progressing painful day was perfect.Thanks!

  10. Very interesting analogy, Wren. I think you’re completely right, I also think knowing that there is no definite ‘end’ to a pain makes it a whole lot worse to tolerate. I sometimes get pretty bad period pains but I know that within 24 hours it’ll go away so it doesn’t get me down. But when you’re faced with ‘uh oh is this new pain in my knee going to stay with me for weeks/months’ I think the brain struggles to cope and rates it ‘higher’.

  11. So true. Thanks for capturing that frustration so well, Wren.