Anyone who has ever managed chronic pain or a chronic disease knows how difficult it can be to maintain a clear picture of your symptoms and progress over time, let alone communicate that to your health care providers. And yet, the ability to track and communicate your progress with some level of accuracy can be instrumental in receiving the best possible care and ultimately feeling your best.
Symptoms, by their very definition, are entirely subjective. Unlike measurable signs such as temperature, blood counts or blood pressure, symptoms such as pain can only be gauged based on the sufferer's perception and description. Pain seems to be particularly subjective and therefore an extra difficult symptom to measure. In her article for HISTORY, The Torturous History of Trying to Measure Pain, Becky Little provides an overview of the many ways scientists and doctors have attempted to measure pain.
Not only does the perception of pain vary widely from person to person, but will also change for a single individual as their experience with pain changes over time. Our bodies and nervous systems are incredible at adapting to help us function, making us more tolerant of pain when it is a more regular occurrence in our lives and less tolerant when it becomes less frequent. This is great for helping us live our lives, but makes the task of monitoring our progress that much more confusing and difficult. As a life-long chronic migraine sufferer who has made considerable progress over the past several years, I can personally attest to this phenomenon. Headaches and pain that a few years ago I might have rated at a 2-3 now feel like a 5-6 because I’m no longer acclimated to constantly existing in a pain state.
As a long-time fighter of chronic pain, I am very familiar with being asked some version of the classic 1-10 pain scale, and I have always dreaded and hated it. The idea that I could fit my perception of my pain accurately on a scale of 1-10 from “no pain” to “the worst pain I could imagine” always seems absurd, quite frankly useless and I usually just spout off some number to make the asker happy.
However, having a tool to make something that is completely subjective, actually measurable is incredibly valuable. A few years ago I developed a modified pain scale for myself and since have often encouraged clients to do the same. By creating a scale that was unique to me, my life and my symptoms, I was able to more clearly track my progress and communicate with my neurologist and other care providers. I created a 1-10 scale with descriptions for each number that made sense to ME. I kept a small notepad on my dresser and each night before bed I simply recorded the number that applied to the day. I also chose to input my numbers into a spreadsheet so that I could see my progress laid out on a graph and brought this into my appointment. While I think it’s super cool to be able to see your progress visually like that, this is certainly not necessary.
How to make your own modified pain scale:
- Select a rating scale to use. I recommend 1-10 because it’s simple but anything less lacks the nuance often necessary to capture a true picture of someone’s symptoms and progress.
- Assign descriptions to each number. This sounds very simple but this is where details become important.
- Start with 0 as “no symptoms” and 10 (or your highest rating) as a clear picture of the worst you can remember your symptoms feeling.
- Now split that in half to determine your middle ratings. Then split the remaining sections etc. This will give you the most balanced scale.
- When writing your descriptions for each rating, try to avoid statements that are overly general and subjective such as “Feeling great” or “hurt a lot”. Instead, try to include something objective that will make it easy for you to know your number each day. This will also help minimize the effect of your shift in the perception of your pain over time. It won’t eliminate it entirely, but that’s okay because we are really mainly concerned about your quality of life.
Some examples of objective criteria might be:
“Minimal pain, noticeable but did not interfere with day’s activities”
“Severe pain, could not participate in normal activities, spent day in bed.”
“Able to walk 1 mile with minimal pain”
“Able to go up and down stairs without pain”
“Was not awoken at night with pain”
“Did not require any pain medication”
No description will be a completely perfect fit for every single day and that’s okay. However, if you are finding more often than not that no description fits properly, you may need to re-think your scale’s descriptions.
If you’re not sure where to start with writing descriptions, you can find many existing scales online that you can then modify to better suit you.
Start tracking your number each day, whether in a notebook or on your phone or in whatever way works for you. If you like journaling, that can be a great tool for noticing other patterns and reflecting on your progress.
If you are not a fan of journaling, simply pick the best number each day. You might have an interesting observation here or there to jot down, but the number is what is important.