How To Use Pain Scales To Explain Your Pain (Even Though It Sucks)

Fucking pain scales. If you’ve ever sought treatment for pain, you’ve heard this more than once:

Ten means the worst pain you’ve ever experienced. Or else ten means the worst pain imaginable. Unless it means “bad enough to go to the ER.” Or just “very severe.” My new favorite is “Unspeakable / unimaginable. Bedridden and possibly delirious.” That seems closest to the gist of it. There’s even a visual scale for kids with faces!

The Wong-Baker FACES Pain Scale, with cartoon faces whose expressions supposedly reflect pain levels — Pick a face, any face

The pain scale and its inescapable fuckery

Pain Scale 1-10 index with extensive elaborative text by Prohealth.com

All those things are completely different, of course. I mean… go look at that sentence again and think about how far apart some of those are. I’ve never given birth, had a kidney stone, or had my arm cut off without anesthesia, but I can imagine how badly those would hurt. If I truly went by ‘the worst pain you’ve ever felt,’ my entire scale would have changed after my L5-S1 disc herniated. Does that mean that what was my 7 was now a 5 because the scale was stretched?

“There are lots of problems that come with trying to measure pain,” Professor Stephen McMahon of the London Pain Consortium told The Independent in 2018. “I think the obsession with numbers is an oversimplification. Pain is not unidimensional. It doesn’t just come with scale […,] it comes with other baggage. How threatening it is, how emotionally disturbing, how it affects your ability to concentrate.”

What does ‘the most pain you’ve ever been in’ really mean?

I’ve been thinking a lot about this since I saw a post by someone new to chronic pain who said that they couldn’t understand the arbitrary value of a 1-10 scale of pain.

She elaborated in a comment: “Especially when they say ‘10 being the most pain you’ve ever been in’ because yes the pain that I’m in all the time is the most pain I’ve ever been in but I always doubt that it’s a 10.”

My response was:

“Your instincts are right, you should lowball it.

Don’t ever say 10, because they will dismiss you. If you’re not literally on your back screaming in pain, or flat-out unconscious, it’s not a ten.

I say that not to be mean, but because I have been through this. Your normal everyday ‘worst pain’ is an 8. At MOST. That’s how you get a doctor to take you seriously.”

And don’t ever, ever, ever say it’s an 11. Unless you’re Spinal Tap.

And don’t ever, ever, ever say it’s an 11. Unless you’re Spinal Tap.

Pain Scale 6-12 from Hyperbole and a Half featuring comedic faces exhibiting exaggerated pain — Only Hyperbole and a Half is allowed to go past 10. And even HER 10 is “being actively mauled by a bear.”

Turns Out Doctors Care About The Pain Scale Numbers, Not The Words

Here’s what drives me crazy: the doctors who make us do this don’t know or care about the technicalities. A ten is a ten is a ten, I’ve discovered, no matter what the ‘definition’ happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long.

A ten is a ten is a ten, I’ve discovered, no matter what the ‘definition’ happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long.

The Pain Scale: Choosing The Best Version For You (Sorry, They All Suck)

The original McGill Pain Scale / Index Questionnaire, 1975

Some people like to write their own pain scales, and there are a whole bunch of other all-slightly-different scales that do one thing or another. For instance, the McGill Pain Index, created in 1975, doctors ask patients to select from among a list of sensory, affective, and evaluative descriptors for their pain, and assign a number describing their intensity. I’ve filled out this form so many damn times, even in my own medical journey over the last 20+ years (good lord, it’s really been that long hasn’t it). But it’s still a subjective measurement that’s treated as objective and forced onto a numerical scale that truly doesn’t describe the situation.

Things I Wish I’d Known About the Pain Scale

I wish someone had told me at the start that my affect was being judged and noted every time I came in (“affect” in this case means the visible reaction a person displays toward events, often described by such terms as constricted, normal range, appropriate to context, flat, or shallow).

I wish I’d known that the numbers on the scale matter more than the definitions that go along with them: even if a poorly-worded definition traps you at a 6, if your pain feels more like 7 out of 10, you should go with 7.

Pain Scale 1-10 by Famous Artists — So why not use art! I’m feeling a bit Picasso today, how about you?

Describe your pain (seriously, actually describe it)

But honestly it’s better to just get done with the number and move on to actual description. And that’s the right word, too: don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Describe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it clenches.”

Don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Descirbe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it shocks, it cramps.”

My chronic pain started when I was fifteen. I wish, at the start, that I had the words to describe just how different my pain was at night than it was at 10 AM when I might have a doctor’s appointment. My affect at 10 AM and my affect at 10 PM are, well, like night and day. But just saying “it gets worse as the day goes on” doesn’t really communicate that. Turns out most pain gets worse as the day goes on, but not to the extent mine did, and it took time to figure out how to get that across.

An Updated Pain Scale using Roadkill by Holly Scott — My new favorite pain scale right here, using roadkill. By Holly Scott, @curseofmen

Pain Scales: An Imperfect, Objective Measurement of a Variable, Subjective Experience

And that’s the crux of it: all these things are trying to objectively classify something that resists that categorization. There are so many types of pain, but even if you only have one (“only”), pain isn’t neat and tidy. So as you answer pain scale questions, keep the bigger picture in mind. Stress out less about the technical wording of the scale you’re using and more about how you’re going to get across the information you need to get across. Think of the pain scale as an intro to a conversation that might really be useful to both you and your doctor, rather than as the be-all-end-all.

Or just scream “BEES!!!” and hope they get the joke.

Funny Improved pain scale pain index 1-10 — BEES!

What do you do when asked to rate your pain on a scale of 1-10? Are there any pro tips that I completely neglected to mention? Leave me a comment or shout at me on social media and let me know!

So you need an urgent refill on your pain pills or another med under heavy restrictions, and you need it now. How do you make your doctor understand the situation? How do you make sure the pharmacy cooperates with them? What exactly do you say to make this magic happen?! Let me lay our your options for how to get that urgent refill in your hand.

Includes: Step-by-step instructions and a script to help you communicate with your doctor’s office and pharmacy

A background of pills, text: HOW TO get an urgent refill on a restricted medication, janetjay.com"

Preface: Don’t Let It Come To This!

Don’t wait until the day before your script is out to try to get an urgent refill. The more important a med is, the more wiggle room you need to leave your pharmacy.  You want to do what you can to avoid being in exactly this position, where you have to carefully choose your words and your stress is through the roof.  Set up automated refills, set up reminders, set up alarms, set up alerts– however your brain works, do what you can to keep on top of this stuff. However: shit happens, lines get crossed, to-do lists get forgotten, and sometimes you find yourself in this position whether you like it or not. So when you really need an urgent refill now, here’s what to do.

Don’t believe your pharmacy’s automated line

I use Walgreens so let’s use it as an example. If you call their automated line it will say “Your meds will be ready at 9 AM tomorrow,” whether it’s an urgent refill or not. And then you agree and the robot lady on the phone assures you it’ll be ready. Don’t believe it! Sometimes the automated system will immediately say “We need to contact your doctor about this refill, but it’ll still be ready at 9 AM.” Don’t listen! Maybe that’s how it works with some medications, maybe that works as it is supposed to a lot of the time, but you cannot depend on that if you urgently need your meds.

Urgent refill? Call your doctor first thing

The next morning, within an hour or so of the office opening, you call your doctor. Here’s the message I would leave for the nurse:

Hi this is Janet Jay, I am a patient of Dr. Whoever and I’m calling because I am completely out of Medication X. I took my final dose this morning and will need to pick them up before my next dose at 4 PM, so it’s extremely important to get this called in as soon as possible to the [pharmacy] at [address/cross streets]. If there are any problems don’t hesitate give me a call at [phone number]; if there are no issues, there’s no need to get in contact with me! Thank you SO much for your help on this, I really appreciate it.

(The bit about calling back is optional but I always stick it in to save them a little bit of effort: you want to stay on the good side of the office staff as much as you possibly can.)

WAS THIS SCRIPT HELPFUL? SUBSCRIBE TO MY MAILING LIST AND RECEIVE A PDF WITH LINES AND INSTRUCTIONS FOR THREE CALLS OF INCREASING URGENCY

Take a look at that script: there are a lot of important hooks in there. No matter what, you MUST say: your name, your doctor, your medication, how much you have left, if it’s time sensitive and just how much, your pharmacy, and your phone number.

No matter how you word it, you have to make sure you communicate

why you were calling,
what you need them to do,
when you need them to do it
& why you need them to do it then

Wait. Double check with your pharmacy. Wait more.

You’ve left the message above and are hoping to hear back soon. Most pharmacies have an automated system or app that you can check prescription status on— unfortunately, it really varies how quickly they are updated. That’s fine normally but when you are waiting at home with bated breath, trying to play middleman between a doctors office and the pharmacy about a medication you have to have ASAP, you don’t want to call and nag your doctor about calling in a script that they’ve already called in an hour ago. Not that it would be the end of the world if you made that mistake, of course, but when you’re asking for slightly special treatment you really want to be aware that you’re asking for special treatment. All that to say: even if the Walgreens app says they’re still waiting to hear from your doctor, you need to actually call and ask a real person whether your doctor’s office has gotten in touch. Half the time they’ve already heard from the doctor and it just hasn’t updated yet. But even then, the call isn’t a waste because then you can reiterate when you’ll be there to pick it up and how important it is that it’s ready at that time. The big thing is to be aware of what you’re doing and what you’re asking of people. Hopefully you don’t find yourself in this position often! But when you do, remember:

Lay out what your problem is, what needs to be done about it, when that needs to be done and why. Stay polite, stay professional, state details and facts clearly.

I’ve definitely had refill sagas that made me cry, but leaving a sob-ridden message only goes so far: a doctors office going to take you so much more seriously if you say something like

“as of yesterday afternoon I am out of my pain medication which I usually take every twelve hours, I woke up this morning and my pain level was an eight so it’s incredibly important that my refill gets called in before noon today so I can pick it up before my next dose is due at 4.”

See what I did there, with a lot of very specific details, a legitimate reason why I’m asking for the things I’m asking, and a call to action? That’s your goal.

I hope this script manages to help some people going through a hard time–phone calls can be so daunting and anxiety-ridden that a lot of people avoid them, but they’re really crucial for problems like this.

REMEMBER: SUBSCRIBE TO MY MAILING LIST FOR A PDF SCRIPT FOR THREE DIFFERENT CALLS

What if you still don’t hear back after multiple messages? Time to examine your urgent refill options.

Do you have your doctor’s email or some way to contact them? Is there a different line you could call where you speak to a person instead of leaving a message? Are you close enough to the office that you can come in physically? You’ll have a much better chance of stealing a couple minutes of someones’ time that way. And that’s it! Did I leave anything out? Do you have other questions or did this post help you in some way? Let me know on social media!

pain: chronic / words: iconic

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