As a chronic pain patient, I’m here to say that the legendary 1-10 pain scale is basically useless. Saying I’m a 6, for example, means almost nothing if you don’t know anything about my patient story. For example, my 6 is compared to the worst pain I’ve ever felt, which was when I fell off a cliff rock climbing. Someone else’s might be compared to the worst Ankylosing Spondylitis flare ever. Without healthcare probing more into our own individual patient story, the scale doesn’t really tell anyone anything. Let’s not forget that the traditional pain scale does not include mental health, the forgotten partner of physical pain.
Mental health is tricky. It’s almost equal to discussing Social Security or abortion in the political world. Patients, such as myself, get accused of not being a “real” patient because we wake up each day and continue to try with a positive attitude. Other patients think their own story is the only true measure of mental health and accuse anyone who disagrees of supporting “ableism” (as a side note, I’m still not sure if I understand what the term ‘ableism’ means; all I know for sure is that it seems to be a bad word). The one thing I do know is that each patient’s concept of time seems to be the one constant in all this. Each one of us has our own measure of time with which we chart both our physical and mental pain.
For any nerds reading this, you will know that brilliant scientists like Albert Einstein and Alan Lightman have proposed many definitions of time. Time is so much more than staring at a clock waiting for it to say 5pm so we can leave work or school. In my own case, a 2 second fall off a cliff led me to become an epatient advisor at Stanford University’s Medicine X conference. For you math people there are:
2 second fall / 86,400 seconds in a day = .00231481% of the day.
A event that was significantly less than 1% of one day in my life has led me to become a Stanford University epatient advisor for their Medicine X (Medx) Conference. That is a powerful 2 seconds that does not fall into any conventional time definition, I would argue.
Simply put, I am proposing that we turn the traditional pain scale into a pain multiplier in relation to time. I believe that asking a patient to indicate a time multiplier gives their doctor a better sense of the patients actual pain and mental health level in relation to time and also provides healthcare a much needed window to start asking about a patient’s mental health. Pain and mental health are not always directly related, but they are more often than not. Currently there are too many patients who are afraid to talk about their mental health for fear of not being believed, and too many doctors are afraid to ask about their patients’ mental health because it’s not their specialty. This has to change!
Once again, I’m going to use math to prove my point.
The beauty of using the pain scale as a time multiplier is that it works with any unit of time. For example, let’s assume my doctor has a full, uninterrupted 15 minutes to listen to and diagnose me. I tell my doctor that for the last 3 months, since my last visit, my average daily pain has gone from a 3 to a 6. I would argue that to fully explain the last 3 months to my doctor, I would need a full 90 minutes to talk with him (15 minutes x 6 on the time multiplier = 90 minutes).
|Visit||Tradition Time with Doctor|
|Visit||Time needed to Explain a 6|
|2||-75 minutes to finish 1st Visit|
|3||-60 minutes to finish 1st Visit|
|4||-45 minutes to finish 1st Visit|
|5||-30 minutes to finish 1st Visit|
|6||-15 minutes to finish 1st Visit|
|7||Can start 2nd Visit|
For non-chronic patients this might sound unrealistic. At my last rheumatology appointment I had to explain to my doctor my bronchitis, pneumonia, post bronchitis hyperactivity syndrome, coughing so hard that I had to pull over in traffic and lay down, all the medications associated with my new diagnoses, diarrhea, severe headaches, neck pain, new chest pains and inflammation, and earning a significant promotion at work––all of this since my previous visit. Now, I’m incredibly lucky in that I grew up in the same neighborhood as my current rheumatologist and was his last patient of the day, so getting some extra time was not a problem for me. However, hardly any of my fellow rheum patients have this luxury, even though all patients should.
Now, let’s look at some large numbers. I’m currently on an every-3-month visiting schedule with my rheumatologist for a host of reasons. Three months is not a long time unless you have a compromised immune system and are on medications, like low-dose chemotherapy, like methotrexate and heavy narcotics. Let’s look at the idea of time if I go from a 2 to 4 on the time multiplier scale.
|Month||Days||Time Multiplier of 2|
|Totals||92 Days||184 Days|
|Month||Days||Time Multiplier of 4|
|Totals||92 Days||368 Days|
As you can see, my average day basically jumps from feeling like a normal, accepted 24 hours to feeling like a day actually lasts for 48 hours. However, jumping from a 2 to a 4 on a normal pain scale really isn’t changing my own quality of life much. I can definitely cope with this change. My meds are not going to change and more than likely there weren’t any major life events in this time period. The nature of the beast of chronic pain is that it changes without warning or cause.
My doctor or rheumatologist isn’t going to recommend any major changes to my current treatment plan despite my multiplier essentially doubling. This is the nature of being chronic. However, this doesn’t mean my doctor shouldn’t be probing my mental health. I would highly recommend that any doctor ask their patient about things like employment changes, money problems, reduced exercise or travel, or any new illnesses that this specialist might not know about. Chances are this doubling is associated with a socioeconomic change versus a significant health change. It is an important part of any patient’s life and should be charted as part of their pain journey.
Time is a better indicator of pain and mental health than any traditional pain scale. While at our lowest, time basically stops. While at our best, time basically reverts back to a healthy person’s scale. We have to judge our own lives based on the idea of our own definition of time management. My attempt at going skiing while another patient’s attempt at sitting through a movie are both examples of managing or coping with time. Since there is no accurate scale to compare the two activities we must use time. Just because I’m skiing doesn’t always mean I’m at an easy 2, for example; I could be skiing because I’m at an 8 but need something that better matches my personality in order to cope with being in that much pain.
Time also indicates our level of mindfulness. The longer time feels, the less likely we are to live in the present. Enjoying life in the present is a good indicator of a higher quality of life, and also a better benchmark than getting a patient to a 1 or 2 on the pain scale, I believe. Patients who are losing the concept of time are also prime candidates for needing/exploring mental health options along with physical pain management.
With chronic patients, I’m a strong proponent of raising the quality of life. All treatment options or plans should be based on raising my quality of life until a cure is found. Learning how a patient defines time in his or her own life is a key element of accomplishing this. Time is powerful. Two seconds might not sound like a lot but it is the difference between ending up at Stanford University helping fellow patients or getting the validation of a diagnosis. Measuring the time of a chronic patient should be the new standard, instead of picking an arbitrary number of a pain scale that really doesn’t mean much without the entire patient story.