1-10 Pain Scale descriptors for patients and doctors

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!

pain scale 1-10 also a pdf

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

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Ankylosing Spondylitis on the McGill Pain Scale

Recently Ankylosing Spondylitis (AS) has been found to involve neuropathic pain. A question from a fellow patient about the McGill Pain Scale score for the condition resulted in me pottering off to see what research had found regarding AS pain scores.

A recent research paper that involved a small AS sample group of 17 participants who completed the McGill Pain Questionnaire (MPQ). The MPQ score for this sample group was 28.

Please note that with such a small sample group this is a ‘ball-park’ figure for reference only.

I’ve added this to my MPQ diagram below, in case this helps any other AS patients out there to explain the pain levels they experience on a day-to-day basis.

McGill Pain Index, final 2

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The main objection you are likely to hear when showing this pain scale to others is that pain is subjective and so cannot be scientifically compared, so here’s some info’ about this scale…

There was no scale of the sort for many years because yes, pain is subjective.

The use of the basic 1-10 pain scale is simply to compare our own pain to our own pain – it is only relevant to us as individuals because only we know a) what pain we are experiencing, and b) what the numbers on the scale represent to us pain-wise.

The McGill Pain Scale (named after the university it was developed at) was introduced in the 70’s by Ronald Melzack and Warren Torgerson and was initially doubted by his contemporaries for the same reason. Of course no scale is perfect, but the MPQ has been rigorously scientifically tested over and over since it’s creation and has actually proved to be scientifically very robust indeed. (There is also a short-form of the MPQ available (S-F MPQ) ).

The reason it works is that it involves asking many patients (so it’s not a small sample group) and they are not asked to just name a number in a subjective way…
The MPQ asks various questions involving both numbers and words that are descriptive of pain. The words used to describe pain have been found to indicate different levels of pain when the similar groups of words keep cropping up in the answers. The set-up of the MPQ is complicated in that it cross references all of the answers with each other to assess things like consistency, but it is designed to be easy to use and easy to score. The complexity used has been found to be very robust for a general pain score.

This scale is a good guideline, therefore, for our understanding of condition pain levels in a general sense.

So yes, pain scales as a whole are still as subjective as ever. But the McGill Pain Scale is a reliable way of comparing conditions as a whole.

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References:

Melzack, R. & Torgerson, W.S. (1971) ‘On the language of pain’, Anesthesiology, Vol. 34, pp 50-59

Melzack, R. (1975) ‘The McGill Pain Questionnaire: Major Properties and Scoring Methods’, Pain, Vol. 1, Issue 3, pp 277-299

Melzack, R. (1983) ‘The McGill Pain Questionnaire’, Pain Measurement and Assessment, pp 41-47

Melzack, R. (1987) ‘The Short-Form McGill Pain Questionnaire’, Pain, Issue 30, pp 191-197

Melzack, R. (2005) ‘The McGill Pain Questionnaire: From Description to Development’, Anesthesiology, Issue 103, pp 199-202

Wu, Q., Inman, R.D. & Davis, K.D. (2013) ‘Neuropathic Pain in Ankylosing Spondylitis: a Psychophysics and Brain Imaging Study’ in Arthritis & Rheumatology, Vol. 65, Issue 6, pp 1494-1503

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Create your own personalised pain scale for better medical info’

One of my fave bloggers has just posted an amazing post!

If you, or someone you know, has a pain condition…. you just *have* to see her templates and reasoning for creating your own personal pain scale.

We all know that pain is subjective – we each experience pain but we can only rate it by what we have experienced. When asked to rate our pain at a score out of 10 the response as meaningless as the concept of “how long is a piece of string?”. Answer: the string is as long as the string is long.
Or maybe: the string is twice half it’s length! 😉

On a scale of 1-10… how much pain are we in?

– What’s the scale they’re imagining it to be?
– How close to their understanding of the scale is my own understanding of it?
– If I explain what my understanding is when I score my pain, will they note it down? Or just note down an arbitrary number that means different pain levels depending on whose reading my notes?
– Would they ever understand that a 10 on the pain scale for a CRPS patient is basically “magic me out of existence because I wish I didn’t exist”?
– If I pointed that out would they just assume I’m depressed or something?!

Elle and the Auto Gnome, Pain scales views!

I’ve talked before about how I used the standard 10 point pain scale to create something that I could use for non-pain symptoms as well as part of a previous post: What I take with me to my doctors appointments. (There’s also other info’ on stuff to take to your doctor, so have a look if you think it could be helpful to you, x) It’s always been more than a niggle to me as the standard pain scale is just so arbitrary – there is no general consensus for what the pain numbers mean. They quite simply mean something different to each of us (and even then our meaning may change over time). All it does is provide a before and after reference for physio’ teams to see if they’ve ‘improved’ our pain levels before discharging us from their care. (It doesn’t take into account any changes in our understanding of what the pain scale might mean during our experience of talking to the physio’ during the course of treatment, either).

So. Yeah. The pain scale sucks.

It’s arbitrary and pointless.

Especially when the pains that are being experienced by the patient are off any scale that the medical practitioner has ever experienced themselves. They’re just not in a position to comprehend that an 8/10 for a CRPSer is ‘nearly screaming’.

So – we need to remedy this.

If you’re going to discuss a pain condition with a doctor, remember that they’ll comprehend your experience better if you can use a scale that ties in with what it’s limiting effects are on you. And not just the physical effects, either. Pain disrupts all sorts of processes, not least our ability to comprehend and understand.

Below is the link to the brilliant post that can help you to do this. It goes into more detail on how to do so, with examples of the blogger’s own CRPS pain scales that she’s created over the years to help her doctors to understand. Notice that it’s okay to create a new one when the old one just doesn’t apply any more. And the different examples also function as templates that you can choose from to create your own scale. This wonderful lady (with a nursing background – she knows what she’s talking about 😉 ) has noted at the end of her post that these are available to use, to share, to help. 😀

And if you think you might end up looking for this link on my blog sometime in the future when your are more able to spend the brain-time, then you can also just go straight to the tab on the homepage for Useful Links as I’ve added the link to the blog article there and noted it as ***Highly recommended***.

Here’s the link: Pain rating scales that describe reality  

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