10...9...8...7...how valid are pain scales?
Pain. A simple 4 letter word that encompasses and wraps itself so intensely around the lives of those of us with RA that is could be our middle names. Nan Pain Hart. Not only do we experience it daily but the degree, the actual point of pain and the duration of that pain are all so random it is enough to make us curl into the fetal position and just scream at some point.
So with those thoughts in my head I began to consider the value of PAIN SCALES. I think anyone who has ever had to chat with a physician about pain has had to deal with the dreaded pain scales. What I find puzzling about this as well as elusive is exactly what it accomplishes? If I say I am having an "8" day versus on my next visit when I am having a "7" day what exactly will that trigger the physician to do?
I started looking at various "models" out there in preparation for writing this post and to my surprise there are so many different scales it amazed me! Not only that, but some use numbers 1-5, some 1-10, all with different wording to "clarify", some use smiley faces, others weird images like the one below that I thought was pretty interesting.
I would imagine that the purpose would be to determine treatment and management of the pain but as we know with RA it can change on a dime so a choice made one day may be totally ineffective the next. Not only that but as a patient, I have some issues with treating pain as do many other folks.
This is just a partial list of the many challenges that we encounter as we try to sort through how to deal with the pain. The priorities of these difficulties are all over the map for RA patients. For me, I worry about adding yet another group of medications to the cocktail I am already on. I mean at what point do they begin to offset if not totally erase the benefit as a result of their own interactions with one another?
This is a real worry for me so I have chosen to stay away from the heavy duty pain medications. Plus I don't feel well on them and I would like to be alert and engaged in my life which often is difficult to maintain with pain meds.
The few times I have had to take them I really feel like someone has covered my brain in a fog and I have no clarity of thought whatsoever. So back to the scale. Are they of any use at this point?
I am really not sure unless we select one that makes the most sense for us and perhaps keep a daily or weekly "pain journal" using the scale and then share that with our physicians. By doing that we can see over time how our medications are working or not working. This may be another tool for us to add to our arsenal in order to determine the effectiveness of our treatments.
Pain treatments in and of themselves are a topic for another post but we do need to consider all the options....
Once again it is clear to me that we must stay focused on our path to managing RA. That includes examining the various tools used by the medical community like pain scales and deciding if they make sense for us. How can we make them serve our needs as we try to manage the daily pain that is such an all encompassing challenge for us? Focus and reflect.
Nan
7 comments:
Hi Nan,
Great post! You pose some good things to think about, like how pain meds interact with other meds.
I wrote a similar article in April on the topic of pain called, "Pain: Determining Its Level is Subjective" http://thrivewithra.wordpress.com/2011/04/20/pain-determining-its-level-is-subjective/
It's about how some judge others in regards to pain and how it’s too difficult to quantify -- which is similar to your focus on the pain scales. I can see we both don't put a lot of value in the scales. ;-)
To find the article, I queried my site using the word, "pain," which came up with far too many posts to sort through; then I searched using the words "pain level," which came up with many posts, but fewer, so I could eventually find it. The subject was surprisingly more frequent in my writing than I had realized. I haven't really felt lately that the pain has been that noticeable. Maybe I've forgotten already what it's like to be pain-free? Maybe my current self-assessed level of "low pain" is now equal to my pre-RA-onset level of bad pain? I think perhaps there is an unconscious adjustment in self-assessment to be able to adapt and to thrive. Interesting...
Thank you for your fine perspective.
Lori you are so right about it being subjective! I loved your post from April. Thanks for sharing it here. Part of what prompted me to post this was my own pain at the moment which has definitely escalated since the Remicade began to fail. Since I am only a week into the Simponi it is too early to tell yet and so the pain continues to be an issue and of course bounces from one joint to the next making each morning quite the eye opening experience! Nan
Loved this post and the visuals..got some chuckles and that is for sure! My most frustrating part of pain management is getting management at all. There appears to be alot of the old school of thinking out there among ra docs that believe if they prescribe narcotic pain meds then we will become addicted. We know better than this but who the heck as the time, energy or patience to educate them...not me! And then there is the issue that alot of pain management docs will not treat patients with ra, saying it is the ra docs responsibility. That catch 22 hell. I am on ultram and have been for years. I have too many allergy issues and ultram actually gives me energy whereas a side effect can be drowsiness etc. In my cast it does just the opposite and one of the main reasons I have stuck with it. A little pain relief along with a hefty does of energy. Yup...best of both worlds and no catch 22 there.
Deb you are so right about the "catch 22" aspect of pain management! My rheumatologist whom I adore, never even really discusses pain with me unless I bring it up! When I consider that it really is quite amazing since that along with significant stiffness and lack of flexibility of my joints are the key symptoms I suffer. very strange....
Nan
Hi Nan,
Very nice post. My thoughts are that while pain in this case is easy and natural to think of in terms of physical pain, RA can also inflict emotional pain as well. Both can have such an impact on people with RA, as well as those around them.
John
I've had different docs over the years, some of whom were quite willing to prescribe narcotic pain meds (while closely monitoring them). Others have treated me as if I'm a drug seeker, which of course absolutely fries me. I have RA; believe me, I'm not really worried about dependence. What I want is relief from the awful pain.
Thankfully, my current rheumatologist feels that treating RA pain is as important as treating the disease itself.
That said, RA pain is so changeable, and my ability to endure it has grown so much, that most pain scales aren't very useful. The first thing the nurse asks me every time I see my rheumatologist is what level of pain I'm experiencing, based on the 1-10 pain scale. It's always different--and if my answer is a low number, I worry that my doc might take that to mean I'm doing well all the time. Not so. The night before the appointment, my pain might have been 8-9 and stayed that way for hours, keeping me awake and miserable.
Pain scales can be useful, but like everything else having to do with RA, they're subjective. Pain that I rate a two might feel like an eight to you--and vice versa.
I'm rambling, but I think you get what I mean. Thanks for a thoughtful and thought-provoking post, Nan.
I've been pondering lately, if pain scales for people who are in pain almost constantly. Wouldn't that skew the scale. For example what used to be a four now might be rated as a two now.
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