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

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.

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.

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

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.

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.

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.

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.

What was her name?

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

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?

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?”.

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.

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?!!!

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)

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

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.

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.

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

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.

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.

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

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

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.

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.