at the Water's Edge

Living life and learning all I can along the way!

Rate Your Pain

**This post is part of a blog carnival, prompted by RA Warrior - be sure to read some of the other excellent posts on this topic!**

Have you ever been to the doctor’s office (or ER, etc.) for something and been asked to rate your pain on a scale from 1 to 10?  This is called the pain scale.  It is used by a lot of health professionals to try to gauge how severe a patient’s symptoms are.  However, if you’ve ever been forced to use the pain scale, you may have noticed some of its inadequacies.  For starters, it’s incredibly subjective.  What I rate as a 5, somebody else may rate as a 7 or 3.  Most people will go off of the type of pain they’ve experienced, and we haven’t all had the same experiences.  Secondly, it only captures how you’re feeling right then – which, depending on the reason for your visit, is sometimes fine and sometimes not.  Thirdly, I just don’t feel like it conveys enough information to be incredibly useful.  Perhaps there are some different ways we can look at pain or different questions we can ask to get a better read on a patient’s condition.

However, let me start with a story.  The only time I really remember having to use this scale was during a very traumatic ER visit.  I was in the worst pain I have ever felt in my life.  As it turned out, I had a HUGE ovarian cyst that was cutting off my blood supply (ah, the pain makes sense now).  But I had been in pain for about 24 hours, and it had gotten progressively worse during that timeframe.  By the time I got to the ER, I was in too much pain to sit still (I was writhing in my chair) or concentrate on answering their list of ridiculous questions…I somehow got through answering my basic information and then they got to the pain scale.  It should have been apparent to anyone by that point that I was in no condition to be sitting there answering questions.  However, when asked the question I rated my pain at a 9.  Nobody explained how to interpret the scale, so I figured, “well, this is the worst pain that I have ever felt, but I have not yet passed out or died, so I suppose it could get worse.”  Looking back, I wonder if I should have answered 10 just to get my point across: I need medical attention NOW.

Many people with rheumatoid arthritis are often asked to rate their pain on the typical 1-10 scale.  This can be very difficult for the reasons mentioned above, and I feel like it does not really capture the full picture of how RA affects one’s life.  Much to the credit of my doctor’s office, they have a great tool they started using a couple of years ago: a survey.  Each time I go in for an appointment, the first thing they have me do is fill out a survey that asks questions about my symptoms, which joints are bothering me, how difficult certain daily tasks are for me to perform, whether or not I feel my symptoms are adequately controlled, etc.  Although they still only get a snapshot each time I go into the office, I feel like it really gives them a much broader view of how I am doing and how my disease affects my every day life.  This survey method is one tool that I think is much more useful than a pain scale – at least in the case of RA or chronic illness. 

In more general terms, I think another important thing to do is to classify pain.  There are different types of pain that we experience, and categorizing those while also capturing the pain intensity might be useful.  For me, one of the distinctions I often make with my RA is between being “sore” and being “in pain”.  By sore, I mean that my joints are stiff, feel a little bruised perhaps, and they are often uncomfortable to move or bend.  I liken this sort of “soreness” to a post-workout muscle soreness – only with RA, the soreness is in my joints rather than my muscles.  There’s also a difference between constant pain and intermittent pain.  Constant pain is obviously worse in the sense that it just wears you out because it never goes away.  Intermittent pain can look a lot like constant pain, too – think regular cramps, or stabbing, throbbing pain.  But there’s also a kind of inconstant pain that really does go away for a while.  In RA this may mean that you are only in pain when you move, when you put pressure or weight on a joint, or perhaps just after you’ve been still for too long.  For me, even if this pain is higher on the intensity scale, it’s not as bad because it’s not always there and can even be often linked to doing a certain activity (e.g. my feet hurt when I walk on them, so I’m going to rest on the couch for a while).  Along these same lines, an important follow up question to ask, particularly in the case of RA is, “Does the pain get better or worse with movement?”  Many times I find that stiff and sore joints feel better when they are used and stretched, while joints that are in a more constant state of pain get worse with use.  Finally, there are different senses of pain like “sharp” or “dull”.  Sharp pain is often described as a stabbing pain, and I’ve heard some RA warriors call it the “ice pick” sort of pain.  Dull pain is more achey, and in my experience, more easily ignored.

Here’s an example diagram that at least shows two dimensions of pain.  I’ve tried to plot out there where the pain in my fingers, wrists and knees fall – and, as you can see, I do not have the same type of pain in each of these joints, regardless of severity:

*Example diagram showing multiple qualitative measures of pain

Chances are, you’ve probably experienced most of these types of pains and could describe which type you are experiencing at a given moment.  The next step would be to then quantify the intensity of the pain.  While I don’t have any grand ideas about that, I think additional questions to figure out how limiting or disabling the pain is may be helpful.  For example, if I have a “bad” headache but I’m still able to work through it, that let’s you know that I might be kind of miserable but it can’t be that bad if I can think enough to get through my work day.  In the case of RA, it may come back to some of the survey questions:  Can you get up from a chair or the toilet without help?  Are you able to brush your teeth…or, ladies, put your hair in a pony tail?  Can you lift a coffee mug?  Can you stand in line for 15 minutes?  If you are able to do these things, is it with some difficulty?  A lot of difficulty?  No difficulty? 

Another case in point: During my worst RA flare I couldn’t stand still for more than 10 seconds without feeling like my legs would collapse out from under me.  I specifically remember an office birthday party where I didn’t have a chair and almost fell down before we even finished singing “Happy Birthday”.  I couldn’t sleep because the pain would ring through my knees and wake me up.  Of course, when I think about when I had my cyst, on the traditional pain scale, I’d have to knock this RA flare down a couple notches from that…but that might not then reflect to you that I was in real need of help.  I didn’t think I’d be able to remain standing for my short wedding ceremony.  That was bad.

And that brings me to this quote from Viktor Frankl's book, Man’s Search for Meaning, that I've always appreciated, as it brilliantly portrays the effect of pain and suffering:

“To draw an analogy: a man's suffering is similar to the behavior of gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the "size" of human suffering is absolutely relative.”

Perhaps this analogy helps to explain why that paper cut on your pinkie finger seems so awful and can keep your focus all day long, even though it’s nothing compared with other pain you’ve likely experienced.  Whatever pain we’re in at the moment is what consumes us.  It is, therefore, especially imperative to be able to express the nature of the pain so that the symptoms and underlying cause can both be properly addressed. I think it’s important to ask more than just a 1 to 10 rating scale for pain – particularly for rheumatoid arthritis patients - in order to fully understand the symptoms.  The more information we share and that our health professionals have, the better our disease can be understood and the better we can be treated.

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Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Copernicus. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!