I damaged my coccyx back in January but I have a pre-existing intractable pain condition (CRPS) so I don’t show how much pain I’m in. It’s a habit that’s developed over the past 18 years of living with severe pain all of the time. Only my boyfriend can clock when the pain is beginning to soar, those of my friends who think they can see when I’m in pain have no idea that by the time they spot it I’m on the verge of inward screaming.
So if my own friends cannot see how much pain I’m in how is a doctor who rarely sees me supposed to comprehend my reported pain levels when they don’t match my outward appearance?
Most practitioners (including pain management teams) will use the 10 point pain scale. But it’s hard to convey what our understanding of that scale is.
When I was first seen by a pain management team aaaall those years ago I was told that a 10 was the worst pain that I could “imagine”. I’m pretty imaginative! And besides I figured that even though I had reached the stage of realising that if someone offered to chainsaw my legs off with no anaesthetic that I would have said ‘yes’ in my desperation I still figured that there must be experiences out there that are even worse than that. So I rated my pain at a 6 when I now know it was a baseline 9 with regular 10s.
When I had completed the maximum allowed NHS pain management treatment time I knew that my baseline pain had reduced a bit so I felt I ‘had’ to rate it less than my starting ‘6’ so I rated it at a 4 when it turns out I was actually getting discharged at a dreadful baseline (i.e. what our pain levels never drop below) of 8. So yeah, the team probably thought they did pretty well and I didn’t know why or how they expected me to be pleased and able to cope/function thereon after. *sigh*
Miscommunication is easy when a scale is subjective.
Being told that a 10 is the worst pain we’ve ever felt doesn’t usually help much either as with a severe 24/7 pain condition the likelihood is that this is the worst pain we’ve ever felt and that just leaves them with a 10 which they often don’t feel is very helpful even though we’ve answered within the parameters.
So… I figured (years later) that I had better find some descriptors for each number on the scale. That way I could share those with my doctor so they could see what pain levels each number represents for me. It makes it easier for them to understand what their patient is actually dealing with so it’s useful input for their assessment.
I collected various descriptors from multiple medical sources and started recording my pain (and other symptoms) in accordance with these. My doctor ended up with several weeks worth represented in one easy-to-assess graph which showed clearly my pain baseline as well as how often and how high the pain spiked (I wrote about that, and first shared my less prettified pain scale descriptors, here). Doctors have a mere few minutes to talk with us so it is helpful to be able to present data in the most accessible way for us to get the most out of an appointment and for them to best be able to understand and help their patient in the time allowed.
It helped me. It helped my doctor.
Especially as my high level intractable pain has been with me so long that I tend not to ‘look’ as bad as I feel. Though after making it to the surgery, through a conversation and then home again I usually find that by heck it shows by then. The doctor doesn’t get to see that bit because we chronically ill have to be at the best we possibly can be to be able to hold a conversation well enough for the meeting to be useful. It is necessary and yet very misleading.
So, here’s my compiled pain scale descriptors in a more user friendly format that when I first wrote about them. I hope that it may prove useful to patients and doctors alike. The reason the compilation is more helpful to me is because when one aspect of it doesn’t pinpoint it well enough another aspect will help me figure out where I am on the scale. Pain interferes with decisions, assessments, pretty much any processing to be honest! So I find that the higher pain level I’m at the less capable I am of accurately placing it on the pain scale. Particularly helpful to me when I’m really bad are the points at which tasks and then concentration get affected – I know that tasks are being affected but when my concentration is being affected it takes longer for me to actually realise that the reason I’m struggling to pinpoint my pain is because… my concentration is being affected!
And here’s a pdf version:
pain scale 1-10
A fellow expert patient and ex-nurse pain blogger, Isy Aweigh, also wrote about the alternative option of personalised pain scales here, which is well worth a look.
Hoping this helps,
With love from me, xx