We need to talk about pain scales, and why not following them is the reason you’re not getting adequate care – and how that affects other patients.
This image has been doing the rounds today. I hate it.
Most of you are aware of my daily pain levels. I have about two dozen partial or total dislocations on a good day. While my joints do come out and reduce easier than those of healthy people, it’s still extremely unpleasant, especially for large joints like hips and fiddly ones like knees and shoulders.
I’m on very strong pain relief, but it only covers me enough to get through a basic day. It doesn’t cover bad days, it doesn’t leave me anywhere near pain-free. It just means I don’t spend all my time sobbing in bed, unable to make it to the bathroom.
As chronic illness patients, one of our greatest challenges is trying to convince our medical and allied health providers that we’re really in as much pain as we are. This is particularly difficult considering that pain for us falls into a few different categories.
We have new, acute pain caused by a new injury or illness (like appendicitis).
We have old, chronic pain not associated with any new injury (like most back pain).
We have acute pain associated with and aggravated by an old injury or illness (like a disc herniation getting worse).
And finally we have chronic ‘acute recurrent’ pain, where each injury or illness occurrence is new and resolves within the acute timeframe, but it doesn’t only happen once (like my dislocations).
Each of these needs to be treated in a different way. The management for post-operative pain is very different to the management of an old injury. Even the way our brain responds to each of these is different, which is why pain psychology should be a necessary part of every chronic pain patient’s toolkit.
One of the issues we run into as chronic pain patients is comparing our chronic, regular daily pain with an acute pain episode.
“If I usually live with a 6 out of 10, and this is so much worse than that… it must be an 11!”
There is no 11, and the pain you’re about to experience is shooting yourself in the foot. Let’s talk about the pain scale.
0 is a magical unicorn number I’m starting to believe doesn’t really exist. You’re in no pain at all. If there’s anything wrong with you, it’s probably anaesthetised or there’s nerve damage.
1 might be hunger, maybe you’re actually itchy instead. You think you remember bumping your elbow on the stairs 3 days ago, but maybe it’s just cold. It’s more than nothing, but is it really anything? You can’t be sure.
2 is discomfort. You’re sucking on your finger because your cat scratched it when you put her in a little elf costume for Santa photos. It hurts, but you’re easily distracted by Thor coming on television. No one’s denying you’re in pain, but if you whine about this for very long you know they’re not going to put up with it.
3 is the headache you get from not drinking enough water to balance out the 8 cups of coffee you’ve had at work to put up with Janet from marketing. It’s distracting and makes you short-tempered. This is usually where most people consider taking Over the Counter (OTC) pain relief, like paracetamol/acetaminophen or ibuprofen.
4 is starting to get pretty damn uncomfortable. It’s worse than a headache, and you damn well better hope no one is driving like an asshole on the way home or they’re going to hear it. This is roughly where period pain sits for a lot of those who menstruate, but sometimes it can be a lot worse.
5 is a bad sprained ankle that you’re still walking on even though you know you really shouldn’t. It’s vicious but not so bad if you can avoid it, but if it’s constant then this is the kind of pain that hospitals start to take seriously. This pain stops you from doing things you would usually do, it’s hard to push through.
At 6, you have a really hard time trying to concentrate on anything but the pain. For those who have experienced labour, you’ll likely remember how you didn’t talk during contractions (cursing out your partner isn’t ‘talking’). That pain is at least a 6.
At 7, we’re starting to get into tears territory. Not everyone reacts the same way to pain – some people scream, some people cry, some people go really quiet. However you deal with serious acute pain? This is where that natural response overrides more logical responses to what you should be doing – Talking to a doctor, doing an examination, even using the bathroom can take a massive amount of effort to overcome that pain response instinct.
8 is serious pain. We’re talking ‘it’s hard to breath’ pain. By the time your pain reaches these levels, it’s definitely starting affect your vital signs like blood pressure and heart rate. You’re distressed, and your body knows it.
9 is the worst pain you’ve ever been in. Not 10. If you can imagine your pain being any worse than it is right now, it’s a 9. If it hurts more when you move or press on the affected area, it’s a 9, because there’s something else that can make it worse. Don’t be afraid to use your ‘9’ because you think they’ll take you more seriously at ’10’. They won’t.
10 is the worst pain you can possibly imagine. Take whatever you’re going through and break your wrist on top of that. If that affects your pain, you’re not at a 10. If you wouldn’t notice, then your 10 might be warranted. 10 may leave someone unconscious. 10 means you’re definitely not on facebook, even for ‘distraction’. 10 is the peak that you can possibly fathom pain to be.
There is no 11. There is no 15. Nothing is worse than the worst pain imaginable, by the definition of that term. Exaggerating doesn’t help you get pain relief or to be taken more seriously by your medical staff. If anything, it has the complete opposite response – they’re far less likely to believe what you say. 11 is shooting yourself in the foot.
When we’re living with chronic pain, we tend to put that pain on an acute pain scale. “What would my pain look like if I could just hand this to a stranger for 5 minutes?”. It’s useful when we’re talking to a pain management specialist or someone else involved in our chronic care, but that’s really the only time it’s useful.
The time it’s really not useful is when we’re in emergency for an acute problem, and we try to add our pain scales together.
“If I’m usually a 5 out of 10, and I think this pain would be a 6 out of 10… I guess that makes me an 11?”
It doesn’t, and that doesn’t help you or your medical staff.
What is helpful to them is to tell them the sort of pain you experience day-to-day, so they know the references you’re drawing from.
“My frequent dislocations at home are about a 5, and this is worse than that. It’s really hard to talk to you right now and I’m struggling to keep my mind off the pain.”
That, that is what they need to hear. They need to hear “this is the worst pain I’ve ever been in, and I’ve experienced <x>”. They need to hear “I’m already on regular pain relief for a chronic condition, and this is breaking through that so we need to take that into account.”
It doesn’t mean your medical staff aren’t going to be jerks. Pain relief in hospitals is a notoriously dodgy area, and I’ve had my share of not being listened to or believed.
It doesn’t mean they’ll understand what your usual baseline is. It doesn’t mean they’ll understand your conditions (especially if they’re rare or uncommonly seen).
What it does mean is that you’re giving them the best possible information to work from. That you’re not shooting yourself in the foot and making it more difficult for them to get an idea of what your actual pain needs are.
Please, don’t overestimate your pain because you think they’ll be more likely to listen, or because you’re combining acute pain with your chronic pain. You don’t just make your life more difficult, but it makes it harder for others with chronic pain to access appropriate treatment when they need it too.