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Saturday, December 17, 2011

Pain Scales... Why We Love to Hate Them

I am honored, excited and humbled to announce that this post was included in the 5th blog carnival at rawarrior.com. Find Kelly Young's take on the "Pain Scale Language Barrier" and check out the 15 other amazing bloggers who were also included here Crossing the Language Barrier of Pain Scales: #Rheum Blog Carnival.
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       "How are you feeling?"  Wow, that's a loaded question.  It is most often asked by well-meaning co-workers and friends, the people who genuinely care but won't know what to do with the answer if it's honest.  I appreciate the concern for my health and well-being, but it's not often that I feel I can answer this question with complete honesty.  Do they truly want to know how my hips are aching, my fingers don't work and my brain is not computing simple things like it should?  Do they even need to know the details?  If I say I am "okay", "alright" or "hanging in there" that usually works to their satisfaction... they can give me a sympathetic look and be done.  If I were to give even one detail (especially lately, as I've been in a particularly angry flare) I fear they would think one of two things: 1) That I am complaining/whiny/wanting attention 2) They would feel so bad for bringing it up that they would never ask again, thereby making me feel rude and inconsiderate.
       This brings me to the subject of pain scales.  This method of patients physically showing care providers how their pain rates on a scale can be useful... though it usually seems futile and too relative to each individual to matter.  Why do doctors feel the need to see where our pain is at before treating us?  It could be because pain is the body's indicator that something is wrong, damage is happening or an injury has occurred.  The trouble with chronic pan is just that, it's chronic.  It doesn't just happen when we hurt a joint or cause damage... the disease itself is causing damage and wreaking havoc inside.
Sometimes it feels like doctors just don't get it.  They don't understand how any of this feels, physically or emotionally.  They need a visual indicator of the way our bodies are feeling in order to assess the progression of the disease.  Pain scales can be useful to show care providers how we are feeling.
Problems arise when the scales we use are expected to relate to each patient the same way.  Like in the above comic, what happens when my perception of 5 is another person's 8?  What if you have been in severe pain for so long that your body doesn't process it the same anymore... you may say you're only at a 2 when anyone else would say the same amount of pain is a 7!
I think the most effective scale of pain will be if we can keep our own scale, daily, weekly, and at each physician check-up.  If we are only rating the pain we experience in comparison to our own pain it should be more effective in helping to identify disease progression and treatment response.  So long as our physicians understand the differences in our individual cases, scales to rate the pain can be useful.

This could also help me at home.  Maybe I need to put a "pain scale" on the fridge and mark where I'm at each day.  Hmm... this could be the start of some better communication.

7 comments:

  1. Personally I never found the pain scales of any use. Yes, chronic pain tends to dull away pain overall particularly as the years with ra go on and on and on. I have heard about scales of functionality...our ability to do things as being more useful. But even with that I think the question of modifications of the task being ask should be asked first. I have always believed in quality over quantity in my ra case. I just want to be as pain free as possible to keep on keeping on.

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  2. You took the words out of my head. I too have trouble answering honestly when asked how I am feeling. I have started journaling each day to note how I am feeling. I am hooping that this helps if I need it too at appointments and to just monitor overall progress or decline. I agree with Deb, quality over quantity.

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  3. Agreed! The moment when you're asked 1 - 10 does nothing to convey how your life is impacted by the pain. I agree that the daily notes are MUCH more useful. Well said.

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  4. How our disease affects us - pain, functionality, ability to relate to others - is the question. Most docs ask about pain, a percentage of those ask about functionality, but few ask how our disease is affecting our relations with our family and friends.

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  5. I too struggle to communicate my pain, even to people who genuinely want to hear the answer to "how are you feeling?" But as soon as I start to describe it, I realize I must sound melodramatic to someone who has never experienced this kind of pain, whether they are friends, family, or my doctor. (Wolves munching on my hands, really?) So I use the same sort of general replies that you mention.

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  6. I guess I missed this one...Great job Cassandra! You expressed this conundrum so well. Congratulations on being recognized and included in the 5th Blog Carnival of RawWarrior.com. Keep sharing; your insights speak for so many of us.

    You hinted at not wanting to cause others discomfort at knowing how you're truly feeling and being affected by your RA. There is indeed a fine line between sharing too much or too little. Only a very few key people in my life know the day-to-day details. For the rest, I just say either I'm doing okay or I'm having a hard day and leave it at that.

    I agree that using pain scales in the doctor's office is pretty pointless with chronic pain issues. I understand they need to have some frame of reference, but ideally it would be more along the lines of a daily journal rather than a periodic appointment 1-10 pain scale question.

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  7. Mary Shade MSN RN11 September, 2013 08:32

    As a nurse who has cared for people experiencing a wide variety of pain related illnesses, injuries, etc. I find it interesting how people view pain and deal with it. I have entered a patient's room who has reported a pain level of 10 (the worst pain imaginable) and requesting pain medication, to find them sitting up in bed, eating, watching tv, laughing and joking around with family members. How do I respond to this? It's a challenge at best and I wonder if they have been educated on the appropriate use of the pain scale, or if my perception is off base. I have gone into a patient's room who reports a pain scale of a two or three and is writhing in pain, refusing pain medication!!
    I have gotten to the point where I assess behaviors such as ease of movement, sleeping patterns, appetite, etc to determine the patient's need for pharmaceutical pain management. I have also taken it upon myself to study various CAM (complimentary & alternative medicine) techniques to help people (and myself) manage their pain. There is also something else to consider- the level of comfort a person experiences. We all experience pain on some level during our lives- some mild pain, some excruciating. Comfort is an interesting concept because a person can experience a sense comfort (based on environment, support, perceptions) while still being in pain. From studies I have read, our perception of pain can be greatly reduced if we are able to attain a level of comfort.
    I have taken care of laboring women for over 23 years and have witnessed what happens when they are provided the support (from family members, doulas, nurses,etc), and a calming environment. I also witness their perception of pain based on how prepared they are for labor and their self confidence. It is remarkable what happens when all of these things are put in place.

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