The reality of chronic pain

 

A continual problem during my kidney-related adventures (!) over the past nine months or so has been how to describe my pain level to doctors, nurses, etc.  They all ask about the 1-10 scale of pain, from negligible to unbearable, as if it's a Gospel truth, and when I can't really pinpoint my pain level on that scale, they get impatient.  Some even seem to wonder whether I'm malingering.

They just don't get how debilitating ongoing, permanent, chronic pain can be, or how it affects one's pain tolerance overall.  Since suffering a disabling back injury in 2004, followed by two surgeries, a spinal fusion and permanent nerve damage, my pain level has been constant.  On the 1-10 scale typically used, I'd say it's routinely at a 3-4 level, spiking to 5-6 on bad pain days (which come along every ten days to two weeks or so, almost on a schedule).  However, medical personnel don't understand how one can cope with such a constant pain level.  They regard it as impossible, and find it hard to believe that anyone can exist normally while living with it.  Very few actually listen when I describe what it feels like.

I came across the post below (by someone using the moniker "invisiblefoxfire" on an unknown social media site;  the post was copied to MeWe by someone else).  It describes pretty accurately, from my perspective, what a pain scale should be for chronic pain sufferers.  I know some of my readers have that problem, too, so I'm re-posting it here as a way for us to describe our situation to those who can't experience it for themselves.

Been telling my (young and abled) physiotherapist for years that I'm in pain all the time and when he asks me to tell him how bad something hurts from 1-10, I really don't know how to answer that.  He'll say "Tell me if it hurts" and I have to say every time "You mean... in addition to how much it always hurts?"  Anyway I love the guy, but he kept asking the same questions in the same way and not understanding why it was hard for me to answer.

Then I found this graphic ... and I showed it to him at an appointment.  (Click the image for a larger, readable view.)

He started reading from the bottom to the top, reading each "normal" level followed by the "chronic" level next to it, and at first he was laughing.  When he got to about 7/4 he stopped laughing and said "Okay well this is getting less entertaining and more concerning."  He went completely silent for a moment after he finished, then turned to look at me with real concern in his eyes and asked me if this chart was really accurate.  And when I said "Yeah, dude" and gave him a big goofy grin and a shrug, I saw something click for the first time.

I'll let other readers who endure chronic pain make their own comments, but as far as I'm concerned, yes, that chronic illness pain scale is accurate.  I live daily at the 6/3 to 7/4 levels.  I've gotten so used to background pain that I sometimes don't notice minor injuries, because their hurt is lost in the overall "noise", so to speak.  On bad pain days, I endure the 8/5 and sometimes the 9/6 levels, popping pain pills to make myself livable-with (if you know what I mean).  During the worst weeks of my kidney problems, with that pain added on top of what I normally endure, I was taking up to half a dozen (strong, prescription-level) painkillers every day.  They made the pain bearable, but only just.

My physician commented that she'd put notes on my charts with other specialists, to warn them that because of long-standing chronic pain, my pain tolerance was much higher than their average patient, but many of them didn't appear to listen to her.  I hope she sends that chart to them next time (yes, I'm forwarding this blog post to her).  If your doctor or medical practitioner(s) find it hard to grasp how bad your pain levels are, you might want to print out that chart and show it to them.  It's the best description I've yet found of how really severe, ongoing pain affects our lives.

(BTW, I'm not posting this to gain your sympathy, or brag about my pain tolerance.  I'm doing so because I know from personal experience how hard it is for "normal" people to judge just how debilitating long-term chronic pain can be.  I'd like to help other readers, who suffer from the same problem, explain it to their caregivers and loved ones.  I hope this helps.)

Peter