Chronic Pain and the Pain Scale Fallacy (or Do Chronic Pain Warriors even use the first few digits on the scale?)

A common question that people face when interacting with medical professionals regarding medical issues is "what do you rate your pain?"  It's a scale from 0-10 where 0 equals no pain and 10 is extremely severe pain.  It resembles something like this:

Doctors, Nurses, Physicians Assistants, and Nurse Practitioners use this as a guide to gauge someone's pain, and it's based on patient self-report.  It's very obviously subjective--the patient has to quantify what they're experiencing into a number--but I get how it's a beneficial tool for medical professionals.  How else can they figure out how bad the pain is without a report from the person experiencing it?

The problem?  For many chronic pain warriors, we may not have experienced anything less than a "3" for years, and this starts to skew our scale.  And for many of us, we regularly exist in the "severe" range.

There is not a day that I do not experience some level of pain.  Some days, the quality of pain is more achy, as if I am experiencing the flu.  On others, it may hinder my ability to walk or breathe.  The unfortunate reality of the conditions is the unpredictable nature of it. While there are definitely things that can exacerbate the pain (i.e.-overexertion, certain foods, certain weather conditions, emotional stress, etc), sometimes there is no rhyme or reason to an increase in pain.  Lately, my "default" pain level has been a "6"--and that's on good days.

But I--like many chronic pain warriors--continue to smile and work through it, and this throws a lot of medical professionals off.  Recently, I had a visit with my primary care and I'd been dealing with a pretty rough case of sciatica pain.  When asked where I'd rate it on the pain scale, I calmly said "7".  I wasn't crying; I'd even cracked a few jokes (because I use humor to deal with a lot of things).  My doc knows me, though.  She knows I'm extremely skilled at hiding pain and fatigue (20+ years of practice), so her only response is "A 7?  That's pretty severe.  We need to get that under control.  I'm going to make a referral to the pain management program."  My doc's pretty awesome that way.

That's not the experience with all health care providers.  A lot of providers will actually assess a person's pain based on how they appear.  So, if you walk into an ED and you're smiling, playing games on your phone, and generally seem alright, providers may assess you as having low pain.  (And quite honestly, if you walk into an ER smiling and playing games on your phone, even I would have to ask why it couldn't wait until you could see your primary care the next morning.)  Conversely, if you enter the ED grimacing or doubled over, they're likely to assess you as being in some form of discomfort.

Admittedly, these are two pretty extreme examples, but in the Emergency Room, the staff are accustomed to making quick assessments to determine what the problems are.  It's a strong skill to be able to quickly eye a person and assess them, and move to start treatment. The challenge comes in when people are accustomed to wearing a mask over their pain. It hasn't be completely uncommon for me to enter the ER in extreme pain, but to show little outward reaction to it.  Or, for that matter, to be making some jokes.  

So, here's the difference between a "normal" (non-Chronic Pain Warrior) and Chronic Pain Warrior:

Or, at the very least, perhaps Chronic Pain Warriors need our own (expanded) scale:

One of the other issues with the pain scale is it doesn't address the differences in severity, quality, or location of pain.  For instance, I may have widespread pain that's achy, but using to the sciatica pain as an example, that was very sharp and acute nerve pain across my hips and down my back in addition to the overall achiness.  I was also dealing with a migraine, and my knee was acting up. There isn't enough space on the form I had to fill out prior to the appointment to write out all of that.  

The pain scale isn't a bad tool, but it doesn't provide an accurate representation for the pain that Chronic Pain Warriors experience, and this leads to even more frustrations in treatment for both the doctor and the patient.  

Definitions of the conditions listed in my medical chart