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. 

©2019butyoudontlooksick.com
  • Amy

    Another good pain scale from article “Using the Pain Scale Effectively”

    0 – Pain free.

    Mild Pain – Nagging, annoying, but doesn’t really interfere with daily living activities.

    1 – Pain is very mild, barely noticeable. Most of the time you don’t think about it.

    2 – Minor pain. Annoying and may have occasional stronger twinges.

    3 – Pain is noticeable and distracting, however, you can get used to it and adapt.

    4 – Moderate pain. If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting.

    5 – Moderately strong pain. It can’t be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.

    6 – Moderately strong pain that interferes with normal daily activities. Difficulty concentrating.

    Severe Pain – Disabling; unable to perform daily living activities.

    7 – Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships. Interferes with sleep.

    8 – Intense pain. Physical activity is severely limited. Conversing requires great effort.
    9 – Excruciating pain. Unable to converse. Crying out and/or moaning uncontrollably.

    If you want to be sure you and your doctor are speaking the same language, print out a copy of this pain scale and show or give it to your doctor so he knows exactly what you mean when you rate your pain.

    Another common overstating mistake is smiling and conversing with the doctor, then stating that your pain level is a 10. If you are able to sit and carry on a normal conversation, your pain is not a 10… or even a 9. Actually, an 8 on the pain scale has been compared to natural childbirth.

    Taken from this website: http://www.healthcentral.com/chronic-pain/coping-403768-5_2.html

  • Amy

    BEST COMPARATIVE PAIN SCALE
    No pain. Feeling perfectly normal
    Minor

    Does not interfere with most activities. Able to adapt to pain psychologically and with medication or devices such as cushions.

    1
    Very Mild
    Very light barely noticable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.
    2
    Discomforting
    Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test.
    3
    Tolerable
    Very noticable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don’t notice the pain. You have adapted to it.
    Moderate

    Interferes with many activities. Requires lifestyle changes but patient remains independent. Unable to adapt to pain.

    4
    Distressing
    Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the similated pain is initially piercing but becomes dull after that.
    5
    Very
    Distressing
    Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.
    6
    Intense
    Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migriane headache combined with several bee stings, or a bad back pain.
    Severe

    Unable to engage in normal activities. Patient is disabled and unable to function independently.

    7
    Very
    Intense
    Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.

    8
    Utterly
    Horrible
    Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.
    9
    Excruciating
    Unbearable
    Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.
    10
    Unimaginable
    Unspeakable
    Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

  • WintersNoni

    My family doesn’t understand why I play video games for hours on end through the night. It DOES distract from the pain. Glad to see I’m not the only one. Thank you for your post.

  • Brandon Ottinger

    We’re all about to lose our pain care if politicians and the CDC have their way.

  • Elizabeth Bacon

    There are some good docs out there that recognize they aren’t in a position to judge your pain. I had one that said “if your 4 is anything like mine I don’t know how you do it.”

    The Rapid3 scoring is standard for chronic. It is designed to give the doctors point of reference but definitely falls short. In some ways it is best used to compare your pain levels from visit.

  • Sky

    Jackie, I’m Steve’s daughter, and my dad sent me a link to your comment. I just wanted to say I’m so sorry about your pain. I have fibromyalgia and migraines, so I understand a little of where you’re coming from. It’s so, so hard. I’d be more than happy to talk with you if you need it. ♥♥

  • Steve

    Jackie, I’m really sorry to hear how awful and painful your days are. Talking about it is one of the first, best things you can do because if you don’t, it just keeps building and sapping what little you have left. Believe me, I know. What I don’t know is how it affects you, what your daily life is like or what it’s like to face this as a 15 year old. On the other hand, my daughter Sky does. She’s at youngandsick.net (not .com!) and she lives with Fibro and migraines and other stuff. She’s 19 and might at least understand a bit better than a guy more than twice your age. Hang in there and you’ll be in my prayers, k?. 🙂 Steve

  • walker

    You are very far from the only one. Sometimes it’s hard for me to stop playing video games or watching tv because I can block out more pain that way.

  • Jackie

    I’m 15, and have fibromyalgia, arthritis, migraines, and some yet undiagnosed problems. Your website has been the only place I can find ways to express my pain. I never understood why I felt certain ways or if I was just being overdramatic. I now realize I’m not the only one. ive never been good at expressing pain, simply because I’ve always had it. One persons 10 is my 1, only because the best I feel is never very good. I have spent much of about the last 3 weeks at a solid 7 at least. I spend most of my time laying down in my dark bedroom, crying in pain, and unable to sleep.

  • Jackie

    So I’m not the only one who pretends the pain isn’t there? I feel that’s the only way I can cope, ignoring it until I “forget.” Fibro, arthritis, and migraines are very painful for me, I have spent much of the last few weeks crying in pain and frustrated beyond comprehension.

  • walker

    Sometimes it feels like they seriously never pay any attention. I once showed up at an ER in the middle of the night barely able to breath, and even though I was a patient in their network and had been to that hospital before, I was given a stack of paper work and told to sit down next to the kid puking his guts into a trash bag. The fact that I had just taken new medication and was having an allergic reaction didn’t matter to them.

  • walker

    I wish they would just stop asking that stupid question. Or that I had your ability to use other words so they wouldn’t.
    Sometimes I just want to yell at them it hurts like all **** **** *** **** or I wouldn’t be here!
    My current main doctor has never asked that question, but as someone born with fibro, I spend as much time not thinking about my pain as I can so that I stay (mostly) functional.

  • Crz

    I don’t have Lupus that I know of. After three years I’m told they may never be able to diagnose me. But I’m in pain a lot, and I’ve had literally dozens of doctors ask me if my pain were a number, what would it be. This always seemed weird to me. Pain isn’t numeric. If your pain were a butterfly, what species would it be? What geometric shape would your pain be?
    Well, I did learn that doctors asking this question aren’t looking for a philosophic debate, so I just throw a number out there, usually a high one so they understand the urgency of helping me. What kills me is that no matter what I tell them, it doesn’t seem to make any difference. I could say two or ten, and they just write it down. It doesn’t change anything. I suspect it’s just something they ask to make it look like they’re paying attention.

  • Anthony Turtle

    I had a visit to the physiotherapist at the hospital the other day and my knee dislocated, “what’s your pain level now?” was asked. I replied “about a 7”, “is that all?”

    I reached over, pulled the pin from his lapel stuck it ¼” into the back of my hand. “Yep, about a 7!”

    His jaw hit the floor literally!

  • ducky3

    Lucky you! I haven’t been able to try it, yet. And, no one I know has taken it. What are the side effects you’ve noticed? If there’s a side affect, I’ll usually get it.

  • Nucynta ER – it’s expensive, and I may not be able to keep taking it much longer, insurance is getting dicey. But it’s been pretty good so far. A couple of unnerving/unpleasant side effects, but overall much better.

  • ducky3

    What was her name?

  • ducky3

    I think the only answer I’ve come up with is to keep trying to find a decent doctor. The only ones I’ve had that seemed to understand at all were my pain doc’s PA, who apologized for his insensitivity a number of times, and my most recent GP, who has had severe chronic pain due to an injury, herself. Although, even after I explained my pain, she asked, “So, are you going to get a job?”…..Still an unknown, then, I guess. You might try looking up lists of docs on the pain related medical associations – there is a doc named Dr. Forrest Tennant who wrote “The Intractable Pain Patient’s Handbook for Survival” and has a publication as well as links to a pain association with docs like him, around the country.

  • ducky3

    I just write in the margin that I’m never not on meds.

  • ducky3

    What’s the med?

  • ducky3

    Yeah, I meditated for 30 years before becoming injured. So, my ability to sort of automatically breathe through and release my body’s or my mental or emotional response to pain is higher than most…..even then, I’m struggling just to survive my ongoing pain condition. Instead of giving me credit for actually being better than the average Jane at tolerating pain to begin with, and so being really in trouble with this situation, my docs unanimously decide that I’m a whiner, exaggerating for who-knows-what-reason. I’ve seen some people in waiting rooms, all red in the face, crying and shaking. I have no doubt that happens fairly often in a pain practice. But, if we don’t express our pain that way, is it fair to assume it’s not as bad?

  • ducky3

    The thing is that our brains keep reconfiguring themselves to tolerate the higher pain, so it’s not just the actual pain, but the SIGNIFICANCE of it to the given person, at that exact time, that is important. The re-allocation of resources, including neurotransmitters, to tolerating pain steals them from other functions, so that our entire body/mind system begins to degrade, so tolerating chronic pain is very expensive, in a way the pain scale does not recognize. So, to a novice, a pain might be a 10, but to us, it’s a 7; nevertheless the toll it takes on our organism to make that pain a 7 is worse than what the novice has to deal with to tolerate their “10” for a limited period of time.

  • ducky3

    So true. The fatigue factor is very important; and the creeping exhaustion that takes over one’s life, until the “running on fumes” metaphor gets turned on its ear, (I WISH I had fumes to run on) plays a big role in how some of us keep getting worse, not better. But, if I rest up a bit, (like, for a week), then I can deal with a bit more pain from the inevitable flare I’ll get from getting something done (like groceries), yet the rest plus errand adds to the continuing cycle of tissue degeneration in my back and ensuing increased pain and exhaustion, so the temporary 6 is really contrived. On a day when I am at the doc, I have rested up for a week, at least, to be sure of keeping my appointment, avoiding necessities like cooking or cleaning, or an errand, the whole time, which causes extra suffering from the increased boredom of lying down even more than I would, strictly speaking, have to. Maybe the pain is a 7, but because I can dredge up the energy to keep my mood up and so on, I’ll call it a 6 at first. Usually, after focusing on it, my awareness of it will increase and I’ll have to re-answer the question. So, I say, “It’s a 6 or 7” and the doc conveniently ignores that keeping it at the 6 or 7 so that I can stay alive long enough to hope for improvement has ruined my life. If you try to explain that to them, they look like you’re boring them and taking up too much of their time, because their focus is “What can I do for you, today, so that I can get you out of the room and send the bill to your insurance?”.

  • ducky3

    What I say sometimes is that, to me, because I have a deeper understanding of it than they do, the scale is exponential, not linear. That’s because, at the lowest levels, one doesn’t pay enough attention to it to notice the subtle gradations in pain intensity as it increases. It’s not until about 5 or 6 that one even notices it consistently. And, there’s, at my baseline pain level, 7 – just having arrived there from 6, inching upwards bit by bit, until I can’t deny I’m in danger of entering the 8’s (I call that 7.5), knowing that I’m very likely in for an 8, if I don’t lie down and hit extra meds, immediately (8.75), and ….ta da! 8! And, between 8, which, for me, is curled in a ball in bed, hitting the meds periodically, trying to stay calm and waiting out the stress and boredom until I can at least sit up again, and 9 (curled in a ball, in too much pain to even turn over and reach for another pill, for hours), there are similar stages, but maybe sliced thinner, since 10 is THE MOST PAIN IMAGINABLE, which is ridiculous, and there’s always room for one more thin slice of pain, before one does oneself in or has a heart attack.

  • ducky3

    It’s as if people think that it goes from “lots of pain” to “dead”….They can’t see the endless gradations of grey we are forced to move through, if we don’t get the right kind of help. So, if we’re not dead, or on the death bed, then, to them, we’re ok.

  • ducky3

    One of the BIG problems is that there is no distinction made between acute and chronic pain. What is the excuse for this? There are some researches who have had chronic pain, surely, and know there is a need for different scales. I was an athlete who ran 5 minute miles, so I can deal with pain, even by choice, and grew up in hospitals, having over 10 major surgeries by the time I was 4. Still, I had NO IDEA what chronic pain was, until it happened to me. When all of the ligaments in my lower leg were torn on the soccer field, and I had to crawl off the field, and was unable to move or talk for several minutes, that was the most pain I’d ever been in, unmedicated. Recovering from a 12 hr surgery on heavy drugs was actually the most pain I’d ever been in, though. It’s hard enough to compare those two, but to try to compare intractable back and nerve pain to them is not only impossible, but pointless. I think the real problem is that docs are too busy making money and practicing the few techniques they’ve gotten training in to actually THINK about anything, including if they’re perhaps causing harm by insisting on making us answer questions in misleading ways.

  • ducky3

    Argh, I know. Usually, the docs I know say “The worst IMAGINABLE pain.” My genuine response is “That’s the stupidest scale I’ve ever heard.” …partly because we can’t imagine pain, only the signs and symptoms of it, or causes. My 10 is this: I’ve been run over by a mac truck and cut in two, but am still alive.”. How is that helpful for what I’m feeling, now?!!!

  • I recently got a new medication and now I am down to 4 all day every day (outside of flareups or cases of overdoing things) and occasionally even down to 3 at times, and though rarely, even for an entire day….it is bliss. Still wearing, but comparatively? Bliss.

  • Monique D’hooghe

    gabapentin (a not so effective anti-epilepticum that can work really well on chronic pain) has been a life saver for me…. maybe something of that order could help you bring the pain down further (and drs feel less bad about prescribing it)

  • Lee Sweeney

    My first real pain doctor, 3 years after the wreck asked me this.
    The worst pain you ever had is a 10 where are you now.
    Thinking a min I replied a 5, she looked at me and then asked what my worse pain had been.
    I explained the sun poisoning I had, had to crawl to back seat of car, bent a wheel chair, felt like under the skin was on fire.
    Unlike then I could walk, needed a cane but was not crawling, or crying the whole way.
    We decided I was at a 7 or 8 atm.
    In 2 years she had me to a solid 4.
    Then got shut down. The local GOP did not like her methods, 350 folks lost pain care.

  • I’m in the process of switching doctors (thank god) because my old doctor mainly does rehab, and hasn’t the slightest idea what to really do with me. She’s not a pain mgmt specialist. My new doc says that almost all of their patients have their own personalised pain scale, often written out somehow, and the nurses who work there collect them, he asked me to bring a copy. I was amused. But anyway, here is mine, it sounds similar to what you are describing:

    with the assumption that each successive number includes everything that has gone before it:

    1 – twinges when I move

    2 – occasional pain even when I don’t move

    3 – low grade constant pain but ability to get ‘comfortable’ in certain positions

    4 – inability to get anywhere near ‘comfortable’ regardless of position, but still ignorable if I have sufficient distraction/absorption

    5 – spiking, stabbing, or spots of intensity; wincing/grunting when I move

    (this is my normal everyday level, after meds, somewhere between 5-6, much closer to 6 recently)

    6 – physically compensating in some way; hunching/listing/leaning/limping/twitching/clenching, visibly in pain if you know what to look for

    7 – digging nails into hands for counterpoint if they are long enough, either scratching until I have abrasions or minor cutting if they are not (I carry razorblades for a reason); frequently shifting, pacing, or unable to sit still; unable to sleep because my sleeping meds can’t actually knock me out when I have level 5 to the power of 2

    8 – ‘ohmygod i cannot actually deal with this’, actually complaining and vocally bitching to anyone nearby or posting to fb/twitter etc about how much everything hurts; rocking in place, unable to focus for longer than a few seconds or think substantively about anything other than pain

    9 – crying actual tears of pain, curling into fetal position, rendering myself unconscious by any means available (alcohol, usually, and yes I know it’s bad when you’re on meds, screw you I AM IN PAIN AND I NEED IT TO STOP)

    (9/10, 9.5, w/e, this is the point at which alcohol stops working)

    10 – nausea from sheer pain, extensive and desperate cutting for counterpoint, screaming into pillows (if there are any) or moaning/sobbing/shrieking in general, begging people to kill me or knock me unconscious by whatever means necessary, 2×4 to the head is fine, really, concussion is NOT A PROBLEM RIGHT NOW

  • For someone like me who has to take meds every four hours, I measure it by how intensely crap I feel if I miss it by a little bit. Even when it’s not quite four hours yet, pain starts increasing. I imagine it’s the same even for people on extended release forms of pain management – it’s the in between times, or the times you overdo and end up with more pain than usual, that give you a benchmark. And you never, ever, ever want to have those times. But they still happen, and if by chance your appt is on a day when they don’t, you still have a very, very vivid memory of the last time it did. Trust me on that.

  • garycal

    I always refuse to just use the 1 to 10 scale. I pick real landmarks so the providers can understand. I usually say something like “ok, so a 1 is like a tiny scratch, a 5 is like I broke a finger, and a 10 is like somebody pulled off a limb while I was still awake. Given that, my pain level is N”. When in the ER, I’ve heard people describe tiny injuries as a 7+ and serious injuries as a 5 or less. The scale is kind of meaningless without actual landmarks. Using landmarks often elicits good followup questions too, since my condition can generate a lot of pain without any visible injury, as saying that I feel slightly worse than a broken finger with no visible injury makes the provider much more inquisitive than saying I feel “6” without any visible injury.

  • rosalindsanders

    Despite a lifetime of chronic pain and years of therapy, pain forum memberships, medical seminars and focus groups, and reading everything on the topic I could find, I learned of the Spoon Theory recently but was treated like I should have known it all along, I guess by osmosis. On social media I see many complaints from those coping with one or two conditions. But how can I explain that I’ve existed for many years with no treatment at all because the usual suspects (Percodan, Oxy-whatever, etc. just don’t help at all? I’ve had fibromyalgia since a car accident in 1980, although unnamed until 1993. However my back was hurt in a 1957 accident when I was 6, and I have had no pain-free days since. I had a stress fracture in my right foot in 1977, but no letup in pain. An artuficial joint was inserted in 1993, followed by 5 more surgeries a decade later. In 2008 I slipped on ice and both bones snapped in my left ankle, surgically repaired with steel plates and pins. A sore point in my left side that required an MRI last summer showed a colon condition that was supposed to self-heal within 2 weeks. The same MRI also revealed avuncular necrosis (AVN) and my hip bones have been steadily deteriorating, while the doctors called it arthritis. Nobody bothered to tell me this means tissue death, not inflammation. So when asked where is my pain and shown a pain chart, their eyes just start to glaze over and I’m sent on my merry way with a label of drug-seeking behavior. I have another initial visit next month. Any ideas on how I can present an effective conversation that may bring me relief, and not them shaking their heads? Does this acute and chronic pain all over have its own name?

  • Elizabeth Bacon

    I’ve been to your site before and just today clicked on the link to get here from the healingwell.com Lyme Forum. I was scanning the page and saw this post. It is so apt. I do this every three months because I have to visit my doctor every three months even if nothing has changed. The visits are purely to satisfy requirements for my doctor in terms of “seeing a patient as often as you fell is necessary to ensure that they are on the appropriate treatment.” Translation: if you write scripts for any pain meds you have to see patients more than is actually necessary to prove they are not drug addicts, but we (the federal govt) won’t tell you have often that is. You have to pick a number and then if we (the federal govt) think you are not seeing them often enough, we’ll get your license yanked.

    I hate these stupid scales they don’t tell the doctor anything and nobody looks at them. If I had a particularly good week (on my meds), my scale might be a 4. Without meds it would have been at least of 7.5 if not higher. My doctor will say, if your 4 is like my 4 I don’t know how you function. I take a muscle relaxant and one had a doctor say to me, if I were to take that dose I would be asleep the whole day. Just goes to show that people in pain don’t react the same way as people with no pain.

    Love the spoon theory. It is so on point.

  • Marecedes

    Kylyra – I have lived with RA my whole life and I have always laughed at that same thing. No matter what I said, the doctor’s following question was always “So how ARE your hands” – I learned to reply “They were fine until I had to slap my forehead from your question”.

  • Marecedes

    How do you answer that when you are never NOT on medication?

  • Marecedes

    Hi Ellory, I also have RA. I was diagnosed at 5 years old and am now 48. I have just had both my hips replaced and my husband found this wonderful site full of wonderful people. Best of luck to you. I will keep you and your family in my thoughts. M

  • First off, thank you so much for sharing the spoon theory to the world! Who would have thought a convo between you and your friend would start something that involves a large percentage of chronic pain fighters, to say they’re a “Spoonie”. Your theory has helped so many ppl explain how they’re affected by chronic pain to their loved ones. That’s so inspiring.
    As for the topic of this post lol. I don’t have lupus, but I do have CRPS/RSD in all four limbs, and is starting to affect my organs. I also have Fibro (which is common to go hand and hand). When the doctor asks me that question, I seriously just say “I really hate this question because there is no way for you to know what a 9/10 is for me, as opposed to anyone else (and that’s the case for everyone).
    But then I tell them “the best I can do is tell you that I’m a 6/10 right now… But an hour ago (during a storm), I was a 15/10”. So, now when i see the doctors who I see on a regular basis, know how I scale my pain. I guess it’s kind of hard to argue with a patient who has what is recorded to be most painful health condition known to mankind… About a 1-10 smiley face pain scale.
    Another reason why that scale shouldn’t apply to Spoonies, and that’s bc most of us have learned how to mask our pain so well. To the point that we don’t even realize that we are hiding it anymore. So when the doctor asks a question like that, and physically, you’re miserable. But you look healthy on the outside, you run into the risk of a doctor/hospital staff not believing you.

    Any hoot! Thank you again for sharing your thoughts with the world.

  • Ellory Glenn

    I love your theory I have RA (30 years) and am retired military so 10 of those years were active duty. It is always hard to explain why sometimes I have no energy. My wife even uses it to explain my condition thank you very much.

  • Annunziata

    I don’t have Lupus myself, I have my very own variety pack of illnesses – POTS, fibromyalgia, CFS, nerve damage in my shoulder, endometriosis, hiatus hernia and general aches and pains from a road accident some years back. I find it virtually impossible to explain and describe my pain to others, or rather, I think I am explaining it but the person just doesn’t seem to understand.
    An example – my most recent appointment with family doctor – where I was explaining the severity of my pain and the detrimental effect it is having on my entire life, my mood, my ability to do anything at all etc. Dr asked me, “on a scale of 1-10 where 1 is no pain and 10 is the worst pain imaginable, how would you rate your pain?” I asked, at what time? My pain right now this second, my pain when I woke up this morning, my pain with analgesia or without, what exactly did he want to know? He said “well, maybe an average for the last 2 weeks, how it is at its best, its worst and right now”, so I told him, an average would probably be about 6, it has been pretty bad hence why I am sat here in your room now! At its best it has not gone below a 4 in the last 2 weeks, at its worst it has peaked at a 9, and currently it is hovering around a 5 and that is after taking the max dose of everything available to me (paracetamol, ibuprofen and oxycodone). His reply “Oh, well a 4 isn’t too bad is it” – well when thats the best it has been in the last 2 weeks I think that is not really great actually – “are you sure it reaches a 9 though? a 9 is a lot of pain” – yes that is exactly my point, it IS a lot of pain and yes I am sure; when I can barely breathe because the pain is so severe that even just the movement of breathing feels like I am being stabbed with red hot pokers, when I literally cannot move because the pain is so severe, that all I can do is lay as still as possible, taking shallow gentle breaths, when I cannot even stand the touch of my clothes against my skin because it feels like a burn, when it feels like my abdominal cavity has been filled with hot coals, my legs arms and back feel like they are being beaten with a tire iron, and someone is hammering a chisel through the base of my skull into my head, when I can’t even speak and even if I could my brain is so addled by pain that I cannot think coherently, when my entire existence narrows down to being pure white hot pain and nothing else registers, when the sky could be falling in and I wouldn’t notice because all I can think and feel is agonising pain – yeah, I class that as a 9. I don’t understand how, when I explain this, they do not seem to understand what I am saying, like I suddenly switched into speaking martian or something. And then they say something like “I don’t really want to give you more pain relief as it doesn’t work/don’t want you to become dependent/you’re only young” and I just want to scream. Yes the pain relief DOES work, it turns the dial right down and helps me to lead something more closely resembling a normal life, no I don’t want to become dependent either, but if it is a contest between risk a future possible problem (which can be resolved) or spend my days just existing, existing in a state of terrible pain, or lead something like a life, but with medicine, then I’ll take the medicine thanks. I feel like I am going insane, like how are they not getting what I am saying. Or looking at me like I am a druggie or something.
    Sorry, going on a rant.
    The other issue I have with the scales is when they ask how it ranks according to the worst pain you can imagine or the worst pain you have experienced, because it is so subjective. I mean, if someone lucky has never suffered with anything more than a headache then they break their toe, that broken toe will be the most pain they have ever experienced by far. Yet for someone who maybe survived a serious accident, or had serious burns, or has has several major surgeries etc, their perception will be very different.

  • Larry

    I do not have chronic illness, however, I do cringe when I get asked according to this scale when I go in for various boo boos. See, I’ve spent 11 years beating up my body in the military. With that comes many different aches and pains that come and go, or are there so much, they “become part of the wallpaper.” Some days, my joints have a day long dull throb to them, others, it hurts to move them, and at no time are my aches ever in sync with each other in the sense that they always decide to be at different points on the number scale. Sharp, shooting pain in my foot, dull right elbow throbbing, muscles in my left calf feeling like someone’s stuck a rod in there and is wrenching on it. At times, I find cuts and scrapes on me that I haven’t the slightest how they got there. For better or worse, the soldier in me insists on “drinking water and driving on” regardless of how much pain i’m feeling. I’ve laughed a few poor nurses out of triage when they asked me for 1-10. I’ve laughed at my sisters for asking my nieces the same. Why? I can ignore a scraped knee, or someone elbowing my ribs during a basketball game. My nieces catch a knot with a comb, and they’re screaming bloody murder. People have different thresholds for pain, and an all too simple arbitrary numbering system isn’t going to accurately relay an amount of pain.

  • S. Weidner

    Renee, When my son was born he had some complications requiring he be in the NICU for 3 months. I bought posters from Hyperbole and a Half and gave one to my OBGYN (he paughed for 10 minutes) and posted another by my son’s crib. His nurse loved it (the NICU manager took it down because humor wasn’t appropriate in the NICU… guess who doesn’t work with patients or parents

  • Renee
  • Eloise Swales

    if you like that, you might like hyperbole and a half, which is where it’s from.

  • wanderlust74

    I hate having to a answer the pain scale questions every time I go to the doctor. “How is your pain with medication?”, “How is your pain without medication?” It doesn’t change but they ask me at every appointment and sometimes I want to scream at them that “Yes I’m still in pain so stop asking!!!”

  • Grandma Patty

    Many people go to the Dr.s for very little and want immediate help. They say the pain of a hang nail is an 11. Dr.s become used to hearing all kinds of things. That’s why it is important your Dr. knows your common pain numbers so when they change or get better or worse they will know about it. A new ER Dr. Every time is not a good choice for long term chronic pain or illness. A good working relationship with a really good Dr. You trust is important. Especially when things get bed for you.

  • Colleen Winters

    For me, I tend to treat a 5 as “bad enough that I can’t function normally.” Most days I have pain around a 4, as I have a constant headache. If it’s bad, it’s a 5 – and I can’t get out of bed if it’s joined up with vertigo.
    Since I use that as my benchmark I don’t think I’ve ever gotten past a 6.5 on “my” pain scale, but I can imagine some really bad pain and feel like I’ve never gotten to whatever that would be (Never broken a bone, given birth, sliced open my forearm, etc).

  • Anyone looking for a pain doctor in AL…..Serenity Clinic is accepting new patients. To set up an appointment call 205-623-9742. If calling on a Thursday or a Friday call 205-624-3771.

  • Robin Schmidt

    I found a 1 – 10 description of the pain scale years ago on a Fibro site. I could write it out but that would take far too long. If there was a way I could send it to this comment section I would. Anyone know how to do that? It is the most amazing way to explain to myself, then to others exactly what I’m feeling and we are all on the same page (literally) with what a 6 or 7 or 9 means to me.