Most patients hate the pain scale, especially those of us who live with chronic pain. We’ve learned to ignore a good chunk of our pain, and what would be catastrophic for people who do not live with chronic pain is just another day for us. Which doesn’t make us special or heroes or warriors; it’s just a fact.
I particularly hate using them when it’s just a matter of a clinician needing to tick off a box, rather than being relevant for treatment, and would prefer a “chose not to answer” option that wouldn’t get any pushback from the clinician. Routinely having to put a number on our pain (when the patient isn’t seeking pain treatment) can be both traumatizing and pointless. It’s traumatizing in that it forces us to think about something we’d rather keep below conscious thought. And what does it even mean to say my pain is a 4 out of 10? What’s the difference between a 4 and a 5 anyway? And it’s not like the clinician (other than a pain specialist) routinely asking about our pain levels can do anything about it. If my pain is relevant to whatever I’m seeing a clinician for, I prefer to just say something like “I’m in more/less pain than usual today, so my blood pressure is likely to be worse/better than usual, as a result.” (Blood pressure rises with pain.)
Rating your pain is necessary, of course, if you’re seeking pain management treatment, but the basic ten-point scale is still pretty worthless for that. There is a more advanced scale for treatment purposes, although it too is far from ideal. It’s from “The McGill Pain Questionnaire: From Description to Measurement,” published in 1971 and republished in 2005.
Basically, the questionnaire asks a bunch of questions about pain, its location and severity, and the answers are assigned certain numerical values, which are then added up, for a score that ranges from 1 to 50. So far, so good. It’s annoying to fill out, but it is reasonably patient-focused (it asks the patient what the pain is like, rather than making assumptions!). It may be helpful for the clinician, but I’m not sure it’s terribly helpful to the patient, especially those of us who have pain virtually everywhere in the body, since the questions seem to assume that the pain is only in one location. Anyone with chronic hypophosphatemia knows that at any give moment, we can have bone pain, back pain, a healing fracture, a headache, widespread arthritis, and dental pain, all at the same time. And the presence of multiple pain locations exacerbates the perception of pain overall. I can ignore the arthritis pain most of the time, or the headaches most of the time, but an increase in one or the other will make the total pain even worse than the flare-up would account for on its own.
The site-specific questions still seem valuable to me, with the caveat above, but I’m highly skeptical of the section asking for ratings on the worst level of pain the patient has ever experienced from assorted conditions (toothache, headache, stomachache). A simple toothache is not the same as what we experience from spontaneous abscesses, and I wonder if a patient who labels it “excruciating” will be seen as exaggerating their pain. Ditto for headaches, which can indeed be excruciating, but generally aren’t. It just feels like an attempt to trick a patient into revealing that they’re exaggerating their experience. A clinician who looks at a patient with the assumption we’re lying is not someone I want to work with.
The biggest problem though, just as with the 10-point scale we see more often, comes from translating the questionnaires’ responses into something that purports to be objective but really isn’t. Once the patient’s responses are tabulated, the total is then compared to a scale that is supposed to rank the degree of pain for reasonably well-known conditions. You can see the scale here in an article on childbirth pain.
Basically, the scale gives examples of how bad pain is at various levels, with arthritis, fractures, toothache, sprains and lacerations in the teens; bruising (!), cancer, and back pain in the 20s; childbirth in the 30s, and nerve pain and digit amputation in the 40s.
And that’s where I think the goal of producing an objective measurement for a subjective condition falls apart. Because, seriously, bruising is more painful than a bone fracture? And arthritis is necessarily less painful than back pain? Because I’ve had pretty much everything on the chart (except childbirth and amputation), and they all have the potential to hurt just as much as everything else on the list. For example, if I happen to be having one of my spontaneous abscesses, and it’s at peak infection, with my face swollen, and I’ve been unable to sleep for three days, which in turn makes everything else hurt worse, and I fill out the questionnaire, my total could well be at 40. The scale suggests that’s equivalent to a digit amputation, so when the clinician is looking at where dental pain “should” fall (in the upper teens) they’re going to think that I’m either lying to get drugs or I’m a whiner who exaggerates my pain.
A secondary problem is that the scale may be misused (as I saw it done on social media). Instead of answering specific questions about the pain to generate a number, patients look at the scale and work backwards. In other words, they try to come up with the score, based on the examples, but because the examples are so terrible, they question their own experience. They wonder, how can arthritis pain be only in the teens, when theirs is so bad they’re crying and curled up in the fetal position? It makes them feel bad about their own suffering! That’s absolutely not helpful. (Although, again, to be fair, that’s not how the scale is supposed to be used, just a consequence of how it can be misused.)
If the researchers had stopped with the questionnaire itself, without trying to assign numbers to types of pain, I would see the benefit in the scale. But when they translated the numbers to “known” pain levels, they undermined their own work. It’s obvious to me that there was no direct patient input at that stage (or the patients weren’t heard). Otherwise, the researchers should have realized that each patient experiences pain differently, even if it’s from the same part of the body, the same “type” of pain (headache, arthritis, dental, etc.) It feels very much like the examples were based on what the researchers themselves believed (or had experienced) about certain types of pain, and somehow that got the veneer of objectivity. It’s yet another example of researchers coming to wrong conclusions because they’re filtering the patient experience (often without realizing it), rather than letting the patients speak for themselves.
Bottom line: the McGill scale is potentially useful and patient-focused if it just uses the raw numbers, rather than trying to equate those raw numbers with a specific type of pain. It’s not hard to understand that on a scale of one to fifty, anything over twenty-five is significant, and anything in the forties is really serious. Which, of course, gets us back to the standard ten-point scale, where numbers in the middle are significant, 8-9 is serious, and 10 is excruciating. The questionnaire has the benefit of teasing out the factors in reaching that conclusion, but ultimately I’m not sure how either the simple scale or the McGill scale have any benefits over asking: if you have pain, is it just noticeable, serious, or excruciating?
So that’s the Gin Pain Scale (named after me, not an indication of what you get from drinking too much gin!): None, noticeable, serious, and excruciating. I actually think the results would ultimately be more accurate than the faux-objective ones from either the simple pain scale or the McGill scale, because there are fewer gray areas. I might also separate out an overall pain level from the worst/least in different locations, since I tend to cite the worst pain I have as my pain level, even if there are a handful of other body parts that have a lower level. It might be useful to explain, for example, that while such-and-such pain (e.g., spinal spasms) is serious, I also have noticeable pain in a number of other locations (knees, head, etc.).
How would you quantify pain if you could create your own scale to help clinicians better understand your experience?
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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