They make sense if you are a 'regular' person experiencing acute pain. For some with chronic pain it may be appropriate, but I think for many of us it is close to useless.
I say this not because our pain is so different then that of a sprained ankle or a broken arm. Our pain tends to be different because although it is chronic and sometimes constant it is also variable.
When I go to the pain management doctor's office I am immediately given a form to fill out. There is a diagram of a body, front and back, left side, right side. I put a circle around the left eye where the pain now resides. How bad is the pain, rate it from 1 - 10 is the other question on the page.
I cannot answer that question, not with a 1, or 5 or even 10. Right now, at this moment, I have not used my eyes to read or for any extended usage, having driven for a while to get there and then doing nothing, right now it is a 0 or a 1. If I read a short article before they call my name, it may be a 3, if I was at home and did not heed the pain's call; continuing to use my eye to read or bake, or talk with a few people at once, causing me to move the eye a lot, it would be an 8, sometimes a 9 (I call nothing but the trigeminal neuralgia lightning strikes a 10.)
Hopefully our docs understand that saying it is only a 3 right now, uncomfortable, twinging, hurts a little more then someone else's (one of the most odd scales to my mind) that this is how it feels for this snapshot in time - but the overall picture and words cover a much larger range.
I am not sure how you would draw a scale for us: maybe there needs to be two - one for acute pain and one for those in chronic intractable pain. And even then maybe there needs to be two, for the pain right at this moment and for the pain overall.
Good point. When faced with those forms, I tend to think of my pain levels as a fast forward (or backward) film of the last week, the sort of total experience of the last relevant period of time (I guess I'm averaging?) and even that is an exercise in frustration, knowing that does not express at all adequately what those spikes and the period of recovery between them are like.
ReplyDeleteLili, Thanks. If there was even a little box somewhere that you could check for "averaging'would help us, and doc.
ReplyDeleteI'm working on more of a qualitative pain scale, done with illustrations, since most people (especially in acute pain) don't have a vocabulary to describe their pain. Things like burning, throbbing, etc. Those descriptions can tell a doctor what types of pain fibres are being affected and all sorts of stuff. Surprised no one has done it yet.
ReplyDeleteYoure right, excellent idea and esp with chronic pain it is an issue of how s it affecting your daily life.
DeleteI hate the pain scale charts. I find it so hard to decide if it is a 4,5,6 or whatever.
ReplyDeleteA doctor can't compare my 6 with someone else's 6 because we all cope with our pain in our own way. And if I said that my pain was a 6 today, maybe I wouldn't be coping mentally as well tomorrow, so I might think it's an 8 instead of a 6. Then again, I might be coping better, and only class it as a 4.
Maybe they need to find a new way of asking about our pain.
Definitely. What is weird to me is the scale that has the comparison, my pain is worse then someone else's better, etc. What in the world sense does that make?
DeleteIt makes absolutely no sense. When you're seeing a doctor, their only concern should be your pain....not how it compares with Joe Blogs down the road.
DeleteHey all.
ReplyDeleteI have found that using the site www.patientslikeme.com is very valuable in communicating my pain levels, as well as other symptoms to my doctors and psych therapist. It allows you to complete a number of surveys
1 Instant Me: you check "Very Bad", "Bad", "Neutral", "Good" or "Very Good" (which is limiting but ...) then you also have a box to explain (i.e., "Right now my low back pain is really bad, maybe a 9 on the ten scale", etc. The advantage is that you can make an entry as often as your pain changes up to once a minute if necessary.
******
The rest of the surveys are designed to normally be filled out either once/week or even once/month, however it is possible to fill them out up to once a day. They include such things as:
2) Quality of Life (basically asks you questions about how your physical or mental issues affect your daily life quality and abilities).
3) PFRS (Pain Fatigue Rating Scale) (asks you a bunch of questions to rate different symptoms, (and you are allowed to enter as many symptoms as you want some of which include Pain in my right foot, pain in my left knee, low back pain, neck pain and can get very specific).
4) Mood Map (asks a bunch of questions regarding how your mood is affected and further, how your mood affects your daily life)
5) Symptoms (Lets you rate each and every symptom you have, which as I mentioned, you can enter as many symptoms as you want to track)
6) Treatments (Lets you report on and evaluate different treatments you have tried for your conditions and symptoms, etc.)
It also has a section for you to enter any and all of your conditions (i.e., fibromyalgia, asthma, diabetes, etc.) and various versions of the conditions. Like I said, I enter them all usually on a daily basis except for the "Instant Me" section which I enter anytime I have a change in the way I'm feeling (can be entered either from your computer and/or some mobile phone units).
It also has a section to list any and all hospitalizations with details. Finally, it charts all the information into graphs (and sometimes your comments). It has an option to print (to a file or hard copy) all of your reports in a format that doctors can easily understand (and includes explanations for the doctors on what the different terms they use mean and how the rating systems work). And you can print the report out for whatever time frame you want, the general options are "PLM" which means since you joined the website, for the last 1 month, 3 months, 6 months, year, two years, etc. Then you can either print it out in a hard copy (mine, which includes 40 diagnosed and 1 un-diagnosed conditions) with the daily entries would print out to approximately 17 pages), or you can print it to a PDF file to email to your doctor (which is what I do about two or three days before I go to my doctor's appointment. It gives your doctor a much more comprehensive overview (with specifics) of how you are feeling at different times for whatever time period you use (I usually send him the last month's worth). AND BEST OF ALL, IT IS FREE!
My doctor loves it and it has helped tremendously in my medical care.
~Gig~
Gig, I am a member of the site but have not taken advantage of it. Thanks for the reminding for me and my readers.
Delete