How do you describe your pain? Numbers on Pain Scale, Adjectives, Silly Weird Pain Faces.

 

I hear it all the time from doctors and nurses: “Tell me your pain on a scale from 1 to 10”. I always cringe at the thought of summarizing my pain and fatigue down to a number. I also get scared at the thought that I have never felt below a 4 or 5. How can every patient from a broken leg, to a chemo patient, to a stomach virus have the same silly faced pain scale picture to choose from?
A sample of the typical pain scale. a line with tics in it is draw, and numbered zero to ten. Above 0 is "no pain", above 5 is "Moderate Pain," and above ten is "worst pain." Below, a series of line cartoon faces which are numbered evenly from zero to ten. 0 has a big smile. 2 has an "okay" smile. 4 has a straight line mouth. 6 has a down turned mouth. 8 has a very down turned mouth and pressed down eyebrows. 10 looks like 8 but with lots of tears.
We all know that pain and fatigue is different for everyone. Some people who have lupus use great adjectives to describe their pain, like a “piercing” pain in their shoulder, or an “achy” pain that feels like they’re bruised all over. I’ve found that using descriptive words helps others understand my pain because I’m painting a better picture for them to relate to and understand.

 

We all have ways to communicate how lupus affects our lives. As an example, I once used a handful of spoons to describe to a friend what it was like to live with lupus and to be forced to make certain choices when it comes to performing the everyday activities that most people take for granted. People with lupus have to parcel out their daily activities and tasks because they often aren’t able to do everything they want or need to do. To illustrate this, a spoon is removed from the bunch for every daily task completed to show the choices that must be made by a person with lupus. I still use my “spoon theory”with family and friends as they ask me how many spoons I have left, or even give me spoon gifts to brighten my day.

 

I know that as much as I try to communicate what I’m going through, it sometimes feels like only other people living with lupus really get it and understand. That’s why message boards like this are so important.

What methods have you tried to explain what living with lupus is like? How do you describe your pain to others? Do you use the pain scale, descriptive words, or maybe that chart with all the expressive faces on it?

 

 

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook. 

©2017butyoudontlooksick.com
  • Amy Michelle Wiley

    When I first got misdiagnosed with fibromyalgia (I actually have Ehlers-Danlos and now also ME/CFS) I attended a pain management class that actually was quite helpful, primarily because it gave me permission to pace and to say no if tasks were too much. But they had a pain chart I have found more helpful than any other I’ve found. Instead of objective numbers or faces, the stages had description explanations like:

    I am in pain but am able to continue doing a normal day’s tasks. I am noticing my pain all the time, but can continue my tasks. I am noticing my pain and it is preventing me from fully performing my tasks. My pain is so severe it’s all I can think about and I can’t do anything else. Ect.

    I found that so much more helpful and I can adapt it to fit my nausea and other symptoms. Here is a link to the chart: https://pbs.twimg.com/media/COohCVTUsAAELr8.jpg

  • Robyn Kayes

    I have lupus. I hate that scale, but the reason is because usually I’m always in pain, and my scale is either I’m hurting or I’m really hurting badly. I usually cannot specifically tell what hurts or where. Sometimes the nurse or doctor seem to get frustrated with me. They seem to forget I’m the one suffering, and it’s not like I want to have to be at the doctor. I’d much rather be doing something fun or even something “normal”.

  • Victoria Jean Leslie

    spent since march 1st in and out of hospital with a lupus flare and a bunch of complications.
    Was repeatedly asked ” out of 1 to 10, if 10 if getting your arm cut off and 5 is getting half your arm cut off what is your pain?”
    okay…
    First I have never had an arm, or half of one cut off so its a terrible comparison.
    Second, im pretty sure loosing half or a whole arm would hurt the same.
    Third, a 1/10 scale offers absolutely no clarification of what type or origin the pain is, and after 24 days of progressing pain it is genuinely hard to tell where one ends and another begins. so silly

  • Jill

    I have fibromyalgia. My pain is mostly 9/10. My fibro Dr prescribed tramadol which really doesn’t do the job and won’t prescribe anything stronger. I want a better quality of life. I am 57 years old and want to be able to babysit my grandchildren. I can’t due to my chronic pain! I want an understanding doctor who will give me what need for a better quality of the life I’m trying live!!! I’ve had percocet when I broke my foot and that did wonders w my fibromyalgia. Does anybody live in he Hartford Connecticut area who has an understanding pain management doctor??? HELP!

  • Deborah Northcutt

    When i am asked that question i give them my parameters of what a one is to me and what a ten is to me. Giving birth to a 13 pound baby with no drugs i rate a 9. Acid burns on 25% of my upper body is a 10. Then i give them my pain number.

  • kr

    FWIW, the 1 – 10 pain scale is not meant to be used as an objective scale to compare one person’s pain with another’s; it’s meant to measure the subjective, individual experience of pain, so you can gauge how an individual is doing, and also how effective a particular treatment is for them (e.g. “medication x takes my pain down from an 8 to a 5”). Objectively, comparing person to person, it’s not good for anything other than a (Very) rough guide. Granted, some health professionals still use it incorrectly, but the whole idea of the 1 – 10 scale is that everyone literally does have their own individual scale, as described in detail by others here.

  • b324

    I think the thing that pisses me off about that damn scale is that most of them have another little poster that says you shouldn’t live in pain. I have several diseases, mostly related to my chronic autoimmune issues which includes fibro and I have a chronic back injury from 2007. I see some doctor like every other month and the nurses constantly ask, “are you in pain” and every time I answer yes, they then ask me to put a number for it and I say my pain is on average always around a 7 and it can go up. The pain has kept me from working, getting out of bed, showering daily, going out into the world, etc… and WHOOOOSH it always goes over all their heads. No pain relief. No helping me find pain relief. No working on different pain meds. Nothing. And I live in Madison, Wisconsin, I go to the UW hospital and clinics, a rather prestigious medical facility in the area and no one cares. They are willing to help my mom with her pain from her 2 spinal surgeries, but for me and my invisible disability, they don’t care.

    So I really hate that stupid pain scale.