Sunday, January 08, 2012

Faces, Earthquakes and Ebola: Making Pain Scales Work in Real Life

RA Warrior is doing a blog carnival about pain scales. This is my contribution. 

"Please rate your pain on a scale from 1 to 10." Said by many doctors and it sounds pretty simple, right? It isn't. When you live with chronic pain, rating that pain becomes a really complicated question.

Pain scales are an attempt to assign an objective measurement to a subjective feeling. And it gets very subjective and imprecise. Let's start with the issue that we all have different pain tolerances - you might find the pain of a bee sting takes up a lot of room in your mind and body, whereas the person next to you shrugs it off.

Then there are filters. When you live with chronic pain, you learn to filter out the messages your body sends you unless they're really annoying. A pain scale doesn't really start at 1, it starts at 0, i.e., no pain. When you have pain all the time, your lowest level of pain takes over the 0 spot, but it is not the same as someone else's no-pain. You slap some filters on things and pain doesn’t really get noticeable until it’s about a 3 or a 4.

When you live with pain on a chronic basis, your own pain tolerance waxes and wanes, as well. At times - especially in the beginning of your life with pain - you might rate it at a higher number because it's the most pain you've ever had. As other joints join the circus and as your disease gets worse, you begin to realize the truly interesting upper reaches of pain and you adapt again. What was a 7 is now a 5. As Kelly mentioned, this means you adapt your reporting and sometimes your experience of pain so it fits into the scale, instead of the scale fitting into your experience. One of the ways I've personally interpreted the pain scale to do this is to get really specific about what happens between each number. As I've gotten more experienced in the ways of pain, I've realized that in order for those interesting upper reaches of pain to fit within the scale, there can't be an equal interval between each number. Instead, each number reflects a much larger increase in pain. For instance, the difference between a 1 and 2 is significantly less than that 5 and 6. Pain is like earthquakes, this way, but I haven't seen that comparison of pain scales to the Richter scale anywhere.

Enter the faces. In an attempt to deal with the not-at-all-objective and really-hard-to-generalize 1-10 scale, the Wong-Baker FACES Pain Rating Scale was developed. This associates the number on the continuum with faces and description of pain.

And it’s better. It even specifies that crying is not necessary for pain to be rated a 10. This scale allows (somewhat) for the adaptation that happens as you pain tolerance goes through its own ups and downs. For instance, having really high levels of paying for a protracted period affects your ability to cope with it and that can also messes with your pain tolerance. If you look at things as objectively as possible, your pain may have been an 8 for three weeks, but because you are worn down and raw, your reaction may be the same as if it were a 9. The Wong-Baker is better, but it's not perfect, it still has too much fuzziness for my taste, the report of pain too dependent on your own coping mechanisms to be a reliable measurement.

And then there's how the pain itself has different faces, depending on its origin. How can you compare the sharp, clean, localized pain of surgery (The Ginsu) with the Dirty Cotton pain of an RA flare? When the pain feels completely different than another type of pain, can you accurately rate its intensity? But I digress into philosophical…

So what's missing?

One of my favorite alternatives is Hyperbole and a Half’s adapted FACES with their accompanying description (this is where ebola enters the picture). Go take a look - it's brilliant. It works because of the descriptions. For instance, 2 is described as "I probably just need a Band-Aid" and 10 is "I am actively being mauled by a bear." Now that's helpful and getting closer to my point.

The best pain scale I've ever seen was when I had a routine mammogram-equivalent test at the Breast Centre at St. Michael's Hospital in Toronto. As I was waiting for the doctor, I noticed a poster with an adapted version of FACES on the wall. With each face - and there were 11 of them, not six - was an accompanying description of the impact of the pain. Not just the "hurts a little bit" or "hurts whole lot" from the original, but words like "I need to take pain medication," "it’s difficult to get dressed and get on with my day" and "all I can do is rock and moan" (this is not an accurate quote - I didn't think quickly enough to ask for a copy at the time, but will at my next checkup).

And that's exactly what's missing in pain scales. When the difference in pain tolerance, coping mechanisms and general mood can affect your rating from day to day so significantly, it effectively renders a numeric scale invalid. However, basing the assessment of the pain on the impact it has on your ability to lead your life is truly meaningful. It speaks to the central issue of living with pain, namely the living with aspect. Whereas a numeric scale may work in an acute case, such as a sprained ankle or broken arm, for those of us who live with it every day, the only thing that matters is how it interferes with your life.

And that's my answer to Kelly's question. I'd like to see something like the St. Mike's Breast Centre’s pain scale become the norm. In order for that to happen, it can't be led by doctors who have only a theoretical understanding of pain. Instead, this kind of change has to be driven by those of us who live with chronic pain and who know pain from the inside. 



Lyn Burnstine said...

Insightful post, Lene. I have never found pain scales to be at all helpful. Recently when I had episodes of chest pain, I told my cardiologist that it wasn't "fall-down grasping my chest" pain, but it was "wouldn't want to have to get up and walk" pain.I think the impact on your life is the only one that will ever be accurate for everybody.

Joy B said...

I don't live with chronic pain and have always found the pain scale useless. If I had NO pain, why am I seeing a doctor or going to the hospital FOR PAIN? And if 10 is the worst pain I've ever felt, I'm not sure what that is. It's bad enough that I left my home and came to the hospital. Does that make it a 6 or a 10? Worst pain compared to what -- Giving birth or getting shot? My husband has sickle cell disease and the pain he calls 7 I would call 21! I like the functionality scale, as you suggested (and Hyperbole and a Half has the right idea!).