If you go to the doctor complaining of pain, you will be asked three questions:
Where is the pain?
What is the pain like: stabby, dull, fiery, electric?
On a scale of 1-10, how bad is the pain?
For a chronic pain patient, the first two questions are frustrating enough*, but that pain scale is ridiculous for anyone. On the left we have "0- no pain", on the far right we have "10- worst possible pain". What the fuck does that mean? The worst pain I have ever personally experienced, the worst pain I can imagine, or the worst pain anyone anywhere has experienced? What exactly is a 10, the pleurisy pain that had my blood pressure jumping up to over 180 or Joan of Arc's final moments?
Holy meaningless, Batman.
One problem with the pain scale is that its ambiguity encourages patients to make up their own definitions. Denelian treats the pain scale like the Richter Scale, i.e., 2 is twice as bad as 1, 3 is twice as bad as 2, etc. I treat the pain scale entirely differently. 5 is normal pain for me. At a 5, the pain is bothering me, but I can work and do housework and enjoy activities like eating and playing video games. At an 8, I can't do dishes or laundry, and I lose interest in eating**. At a 9, I'm restricting water to avoid having to get up to pee and I don't want to play with my dog. By 10, I can't even enjoy video games and I mostly just twist and fidget in pain while tears roll down my cheeks and I yell at my dog if he gets too close to me.
So a doctor dealing with both me and Denelian is getting two different answers when he hears a 5, although he may be entirely unaware of that fact.
Doctors and nurses have their own interpretations. During the incident in which pain was driving my blood pressure to dangerous heights, I told the nurse that the pain in my chest was a 10 when it was hitting. She wrote down "4". I saw this and said, "I told you 10." She replied, "It's not like you're howling in pain or anything. I'm being generous with a 4." So, if I had had any weak spots in blood vessels in my brain I could have had a stroke right in front of her, but I wasn't causing a scene, so no big deal.
I know why doctors use the pain scale. It's easy. It's a single number. A real discussion of pain would involve asking a lot of questions and really listening to the answers. It would involve empathizing with a subjective experience and suspending disbelief. It would involve taking me at my word and trusting that I know my body, my pain and my needs. It would involve understanding that no matter how many years of school you attended, you're not living in my body, and you're not going to have to cope, as well as you can, with less pain relief than you need. Listening. Properly treating pain would involve listening.
In fact, studies have shown that [m]ost doctors, within the first 18 seconds of seeing a patient, will interrupt him telling his story and also generate an idea in his mind [of] what's wrong.
That explains everything right there. Doctors are never going to ditch the pain scale if they can't bother to listen for more than 18 seconds. It would take me the better part of five minutes to list every single symptom I experience, so you're not even getting the highlights in 18 seconds. Don't even get me started on the concept of treating people (or not) with potentially dangerous drugs on the basis of 18 seconds of listening and one number, especially if you've decided that you can tell from a single glance what that number is.
Anyway, I could go on all day about everything that is wrong with health care in America, but the pain scale really freakin' bothers me.
*It would be easier for me to list where the pain isn't. Right now, neither my nose nor my ears hurt. As for the descriptives, I usually just answer "yes". Here is dull, over here is stabby, over there is electric.
**I love food. If I'm not eating, there's a problem.
ohgod you are so totally RIGHT! That question is the dumbest thing evah! It makes me look around for the cameras, or suspect some trick psychological assessment: too high a number they'll think I'm a wimp, too low they won't do anything .... do they mean right this second or three minutes ago--or or should I average it out .... what counts as 'pain'? i mean this feels really crappy, but does it qualify? Is unbearable itching painful? What counts? Fuck it, six.
ReplyDeleteI've never once been able to answer with a straight face.
"How's your pain?"
"Fine, want some?"
"Adequate, thanks"
"Oh, it's doing real well. Me not so much"
"Unpleasant"
"It's imaginary, but I'm a big sissy"
"I've got plenty, thanks."
"I'm running low, you better give me some more"
"Don't worry, you've met your quota"
"Fine, how's yours?"
...
LOL!
ReplyDelete"Bold but fruity with undertones of vanilla and citrus."
Oh I hate the pain scale. After I had my c-section I was in terrible pain. The nurse came in and asked me where I was on the pain scale. I thought about it and lied, and said 7 (it hurt more, but I wanted to leave). She looked at me and said "it doesn't hurt that much." How would she know? She isn't me!
ReplyDeleteI know now that the c-section was probably what triggered the first flare I had, which is why it hurt so damn much.
Luckily, my dr doesn't use the stupid pain scale. She always refers to the worst pain I have been in, how is the pain I am feeling now. And then we work from there. Much better.
Re: Joan of Arc and the other lucky people who have been burnt alive with the blessing of the Church or other religious authority:
ReplyDeleteIf ever it were proved that God a) existed, b) sanctioned such behavior, and c) sanctioned a Hell that was actual fire and brimstone, I would d) devote the rest of my days to taking that God OUT. Because that's what you do to psychotic dictators.
I think the pain scale is very clumsy. But I'm kind of split on this post.
ReplyDeleteNurses are always going to be hard, cold bitches. They've seen everything. I don't really like it, but I just accept it.
The reason they downscale your pain is because most people (not you PF) have never really experienced really bad physical pain. This is true especially of men, who are often much more wimpy when it comes to pain than children. So they compensate. However, they get into such a habit of this that they blanket everyone with it.
the pain scale, how i loath it.
ReplyDeleteand also, i just have to say - to some extent, you get USED to the pain. in two ways:
1.) after a while, it hurts the same amount, but it's still the same. it becomes a norm. you can't cry and scream for years - you can't. your mind starts to cope, without anything. not making the pain *less*, just finding things to disract - so it's still OHMYGODSTHERE but you aren't screaming. there's conscience training, too. PF, your 5 is what your used to - and would make someone not in pain howl. because you learn to ... not accept, but adjust, and after awhile, it's *embarrasing* to make faces or whatever.
2.) people don't want to know. they sure as hell don't want to HEAR and SEE it. and so people who are in pain are *taught* how to NOT SHOW IT.
[for instance - after the AI Porphyria was diagnosed when i was 9, i was sent to a Children's Hospital to "learn how to manage my pain." swap the word "managed" for "hide", and you have to most *educational* 6 weeks of my life]
and it's all fucking relative, anyway! someone who's never had so much as a *papercut* is NOT going to even be able to comprehend what a broken leg feels like.
i know that some med schools [schools of thought, i mean] are *TRYING* to teach that Pain Is What The Patient Says It Is.
but it's not moving very fast. for the exact reason, i think, that you wrote - it takes too much time. [and, i would argue, empathy - when i *have* managed to make a doctor or nurse UNDERSTAND what it is, they've been really really upset, and not anywhere NEAR as good at their jobs as normal. they can't empathize to the point of not being able to function. but they COULD empathize a bit, and don't because it takes TIME and ENERGY... sigh]
I, too, am a chronic pain sufferer ever since being nearly killed in a massive auto wreck. I take methadone by prescription for it, issued by a pain specialist.
ReplyDeleteMy pain scale is very similar to yours: 5 is pretty much "normal" - stiff, sore, and the pain is noticeable, but I can generally operate normally.
At 6 the pain occaisonally comes to the forefront and distracts me but I can still generally operate normally.
At 7 the pain starts making everything significantly more difficult - I can function but everything requires more energy, effort, and grunting/wincing. Since I only take my Methadone on an as-needed basis, it is here that I will start seriously considering delving into my medication, especially if my pain has been consisting increasing until this point.
At 8, the pain is all I can think about, I'm not quite crippled, but I can't really function with any effectiveness. In addition, by the time I've hit 8, sleeping without medication is basically impossible.
9 is crippling pain.
10 is thought-crippling pain. I can't think, I can't move, I can't stand being conscious but can't escape it without my medication.
I live most of my life at 6.
As an aside, the methadone never makes things better than 5, regardless of how severe my pain level is when I take it. The miracle of the methadone is that it can bring a 10 down to a 7, a 9 or 8 down to a 6, and a 7 or less down to a 5. But even if I took it at 5, I'd never feel less pain than 5. The idea that one can be on narcotics and "feel no pain" is a lie - at least in my case.
Just so you know (I'm looking at you, thewrittenwordreviews) not all nurses are cold hard bitches.....well, I am a cold hard bitch and am also a nurse, but I assume the two don't go hand in hand because I was the former long before becoming the latter.
ReplyDeleteHere's what I tell my patients regarding the pain scale: Don't stress about what number you give me. If you're in pain, I'll give you the pain meds regardless of what number you say. The only reason I ask you to quantify the pain with a number is because I am *required* to do so.
So there!
~Meanie, RN
Chronic pain is an awful thing to live with. Too bad your health care providers can't learn your personal pain scale - then you would have a shortcut to some really efficient communication.
ReplyDeleteI am a practitioner of therapeutic bodywork, and I sometimes ask people to rate their pain as a way for me to know how they are feeling. I can offer them my best work if there is clear communication between us about what their needs are. I find that some folks don't have a sense of a "gray scale" with their pain, and that "I hurt" means something different for everyone. So it ends up being a poor descriptor. One intention of the number scale is to create a shared language around something that is an unique experience. It's clumsy, and obviously not perfect. But it does provide the one on the outside (me the practitioner) a means to measure changes in the state of my clients' well-being.
Perhaps you don't know that 20 some years ago the pain scale was created by a group of nurses who felt it was important to monitor more closely and carefully how much pain someone was in, so that it could be adequately treated either by medication or other means. This group of nurses worked in cancer wards and hospices. Back then a lot of pain went undocumented and people didn't always receive enough pain medication to alleviate their pain. In fact, most patients were never even asked about their pain! The creation of the pain scale was an attempt to make sure this would not continue to happen to people, and as a result of the implementation of the pain scale things are much better now.
Clearly things aren't perfect, as I've been learning as I read your stories here - it seems that perhaps what we need is some improved language and a scale that relates to "activities of daily living" as opposed to some vague numbers. I do think it's important to find a good way to communicate about this, for the greater good of all.
Just my 2¢ worth.