The Pain Scale and Chronic Pain
This is the pain scale they have on the wall in the rooms at the hospital.
This is a terrible pain scale on so many levels! But, for someone in chronic pain it’s pretty much useless. The faces that go with it are just, well, humorous.
- 0 – No Hurt – A person with chronic pain likely can’t remember what this feels like.
- 2 – Hurts Little Bit – This would be nice. This is like oh, I just tapped my finger on the hot stove eye. Yeah, it kinda hurts but it’s no big deal, let’s go on about our business.
- 4 – Hurts Lots More – Ok, this is actually where the pain for someone living with chronic pain typically starts. This is a great day for us. At this point we can still ignore the pain and go on about our business and even smile.
- 6 – Hurts even More – This is the point where those of us with chronic pain start to crack a little. We might even start to look a little like the (not so ) smiley face in the image above. Those who know us well can usually see that we are in pain. Even so, the most we are likely to reach for at this point is a Tylenol, because we know it can get much worse.
- 8 – Hurts Whole Lot – This is the point at which those of us with chronic pain live too much of our lives. And yet, still, we can usually fake a smile, and the worst our face might look is that disgruntled 6. At this point we are likely reaching for the ice pack, or the heating pad, and maybe considering grabbing something a little stronger for the pain (if we have anything).
- 10 – Hurts Worst – This is about the silliest thing on this entire pain scale. What are we comparing to exactly? How many times have we heard if you are at a 10 you should go to the ER? Seriously! If those with chronic pain went to the ER every time they were at a 10 they’d live in the hospital. Nope. At a 10 we curl up in a ball, take anything we have on hand, definitely have the heating pad on full blast, and are trying to find a way to knock ourselves out. We aren’t at the ER because we know they can’t/ won’t do anything for us.
The sad truth for those of us living with chronic pain is that we get really good at not noticing the pain up to at least a 4, maybe even a 5. It’s not until pain hits a 6 that we even think about taking something for it. This is true for all types of pain whether it’s Fibro aches or a migraine.
We have gotten used to the pain. It doesn’t mean we like it, it doesn’t mean it’s become a part of our identity that we can’t live without. But, it does mean that we have learned to tune it out. We’ve learned that the pain is there so we may as well keep on living as best we can despite it.The standard pain scale doesn't work for #chronicpain. #fibro #spoonie Click To Tweet
The chronic pain scale looks a lot more like this:
Chronic Pain and Perception
Kelly Morgan Dempewolf has a great chapter in her book As My Body Attacks Itself: My journey with autoimmune disease, chronic pain & fatigue about how perception and experience affect the way we interpret pain. Think about, in hospital they even tell you to base your pain against the worst pain you’ve experienced… that’s subjective and different for reach of us.
The Story of Pain: From Prayer to Painkillers explains this well. The problem is perception and the lack of a real definitive pain scale. There are several pain scales available now, with different images. While one pain scale might use little (non) smiley faces and give some input to help you gauge your response, there are still other issues.
When you live with chronic pain, the way you perceive pain changes.
What was once an 8 or 9, becomes a 3 or 4 after you’ve lived with it for a while. If you are looking at a pain scale that asks you to compare your pain to the worst pain imaginable, you’ve experienced a lot of pain, you may or may not be able to imagine that your pain can be much worse. The reference of “burning alive” is used often as the “worst imaginable”.
If you are comparing to the worst pain you’ve ever had, it still changes as you go. The worst pain I’ve experienced would have to be the night I was sitting in bed screaming with a massive migraine, and stomach pain from both ulcers and my gallbladder going out. However, the pain I experienced when my neck/back freaked out so that I couldn’t even move ranks up there pretty high.
Another problem with reporting our pain. Once we do get used to living with it, we can walk around with a smile and no one is the wiser to our pain. This is a problem when a doctor is looking at us, because we aren’t presenting the nonverbal cues that they are told to look for with pain.
Those non-smiley faces are a guide for the doctors.
Those are the faces they expect us to be making if we are in that much pain. We become such good actors that it’s nothing for us to hide those faces from the world.
The problem is that when it comes to communicating with doctors, we have to remember to stop acting and show the doctors our reality. When we’ve spent so much time practicing putting on a smiley face for the world and pretending we aren’t in pain… it can be a bit difficult to flip the switch and display our our true pain to the doctor, but it is something we must do so that we can better communicate pain.The pain scale is a chronic pain in my (fill in the blank) #spoonie #fibro Click To Tweet
Sherria Vestal says
I saw one pain scale for chronic pain and fibro. I am at a 7 everyday because it keeps me from doing daily activities. So really I have only 8 and 9 to go. I have had 3 episodes of 10 and it was so blinding I didn’t even know where I was at. I’ve been on ultram for @20 years. Really doesn’t touch my pain but gives me just enough energy to get out of bed. Recommend dose 1-2. I take 5. Have asked for stronger meds, Vicodin, but nope!! And public doesn’t understand why there is an illegal drug problem. Thanks for this info. Very informative.
Fellow Chronic Painer says
4. Make your own person pain chart and bring it to the doctor with you so that your pain numbers can be accurately compared.
Thank you for this blog article! It will help draw some needed attention to a common problem and helps me to know that its not just me alone struggling to use the pain scale.
Fellow Chronic Painer says
I run into this problem as well! I hate pain scales and have no clue what to answer when they ask me to rate my pain… based on my personal scale or an average person my age. It will differ extremely and I dont want to seem dramatic, but I also dont want to undermine my pain by saying it is their level 6. But how to solve this problem…hmmm.
1. Have a chronic pain scale chart separate from a normal pain scale chart at the doctors office.
2. Have better descriptions of pain under the smiley/frowny faces.
3. Ask us how much we can accomplish in a day instead. Like, how often are you in bed? How much does your pain interfere with your life? How much can you exercise (without shaming us to try harder)?
Interesting to apply the standard smiley face pain scale that is used in typical emergency rooms to chronic disease pain. Helpful summary.