One of the most annoying questions that you are constantly asked as someone with chronic pain is “On a scale from 1 to 10, how would you rate your pain?” The only time the dreaded pain scale question is fun is when a huggable white robot is asking it.1For those who are unfamiliar with the reference, you need to watch Big Hero 6.
There is a good reason why they are asking, however. The pain scale is a way to measure something that is unmeasurable. It’s not like body temperature; there is no way for your doctor to know how you feel without you being able to tell her. But how the heck do you know what number to tell them?
Define what each number on the pain scale means.
As someone with chronic pain, you get used to a certain level of pain. You’re probably never at a 0. You probably don’t remember what a 0 feels like. So when your baseline is higher, how do you actually describe the pain level?
The best thing is to define, for you, what each number means. Sharing this information, along with the actual number, also helps your healthcare team know what you mean. It gives a grater depth to your answer and let’s them into your experience. More details, in this case, are very useful.
To help you get started, here is how I, personally, define each number on my pain scale.
0 – No pain
1 – Discomfort. I only really notice it if I actively pay attention.
2 – Uncomfortable, but ignorable. I periodically get reminders of the discomfort, but I can ignore it and I don’t need to change any plans or adapt how I do things.
3 – Light pain. It is somewhat distracting but I can ignore it and push on. I might take things easy if that feels appropriate, but I don’t have to change any plans.
4 – “Pay attention” pain. This is the point where I start to pay more attention to the pain. Is it muscular, tendon, or joint? I start to treat the pain by adjusting my plans, adapting how I am working, stretching, or taking medication.
5 – Need medication. If I haven’t started taking medication yet, I will now. I am definitely changing some plans, but I am still able to work and push through if I need to.
6 – Warning. I need to take active steps to manage my pain and take more proactive rest. I may not be able to push through.
7 – Borderline. I can do some things, but my ability is significantly impacted.
8 – Challenging. At this stage, I can only hold one sentence or less in my head at a time. Conversations are difficult. I cannot cook or do dishes. Brushing my teeth will take effort. It goes without saying that I will not be working.
9 – Non-functional. I cannot think logically and will struggle to make simple decisions. There is very little space for anything but the pain. I don’t know what I need.
10 – Intolerable.
Define each number by how it is impacting you
It is really difficult to nail down a number because your experience of the pain is not static. When you focus on it, the pain becomes bigger. When you are not actively in the moment, the pain seems like it wasn’t that bad. But what is harder to ignore and easier to describe is the impact that the pain is having on you.
This impact is also far more relevant to your health care providers, particularly those who don’t have the lived experience of what chronic pain can do. It is easier to advocate for yourself when you describe your pain in terms of the ways that you have to change your life to accommodate your pain or the things that you are not able to do.
When you live with chronic pain, you get used to experiencing a certain level of pain. The actual experience of pain is unpleasant, but as long as it isn’t effecting my ability to do the things I want to do, I can deal with it.
Take a piece of paper or open your notes app and consider how you would define each level. What are some points of reference that you can make for each point on the pain scale?
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