Monday, December 19, 2011

How Do You Edit Pain?

Good Monday morning, friends! As many of you know, I am blessed with Rheumatoid Arthritis (RA). Yes, blessed. Sometimes I say that sarcastically, but I mean it sincerely. Really! Here’s the way I see it: God only gives assignments He knows we can handle with His help. He has graced me with a chronic illness that has no cure, that will progressively worsen, and whose treatments can potentially cause more harm than help. That can be a real downer! However, I choose to view my ailment as an instrument of God to draw me close to Him and to direct others to Him. It reminds me of my daily need for His compassion and His grace, and it alerts me to His unending mercy.

Not too long ago, I told you about some ways RA has edited my life. I’m on a similar task today. Let me explain that sometimes having a chronic illness requires me not only to receive mercy, but also to offer it, especially to the medical community. Rheumatoid Arthritis is a challenge to live with and a challenge to treat, because it affects every patient differently. Yes, there are common identifiers, but those are not always apparent in all patients. For this reason, rheumatologists have developed assessments to help them know how to best treat each individual.

Every time I visit my doctor, I have to fill out a survey that ranks my pain in a variety of situations on a scale of one to 10. For example, am I able to turn on and off faucets with no pain, some pain, or a lot of pain? Can I walk on flat ground with no pain, some pain, or a lot of pain? Can I get in and out of a car with no pain, some pain, or a lot of pain? Can I get out of bed with no pain, some pain, or a lot of pain? You get the picture. Seems simple enough, right? The problem is that people living with chronic pain—severe, intense, prolonged, unending pain—sort of get used to it. They—we—develop a high tolerance to pain, because we live with it daily. My friend Kelly of RA Warrior explains it well in her article, “4 Funny Things about Pain Scale Charts”:
   Another difficulty with measuring pain is that people who live with
   severe pain such as Rheumatoid Arthritis tend to adapt to it. They
   increase their tolerance to pain out of necessity. This is the reason
   that people living with RA often complain that pain scales “don’t
   work because they don’t go high enough.” RA pain often starts out
   as the most severe pain a person has ever experienced, so they
   might rate it with a high number. But then, if pain worsens or
   occurs in numerous joints at a time, they wish for a bigger number.
   Consequently, they adapt their personal pain threshold and now
   rate the pain which was previously a “9” as a “7” in order to be
   sure to fit all of their pain onto the scale. RA patients tend to
   continually increase their pain tolerance in this way.
A funny but accurate way to look at it!

Kelly has challenged us to edit the pain scale. (You can view some real samples at the NIH Pain Consortium.) So I need your help! Knowing the conundrum described above of 1) how RA is unique to each individual and 2) RA patients adjust their pain tolerance out of necessity, what would be a more effective way for patients to communicate their level of pain to their physicians?

Personally, I detest the pain scale. In the realm of writing, sometimes a piece just must be scrapped. Even after innumerable edits, certain elements just do not work. The only thing to do is hit DELETE. In my opinion, it’s time to delete the entire pain scale concept!

I think the physician should treat each patient with real compassion and concern. Instead of having us fill out a chart of meaningless numbers, sit down and talk to us. Ask me what I do each day. Ask me how my pain hinders those activities. Ask me my specific concerns. Ask me how I manage. Ask me things that relate to my ability to live my daily life, and listen to what I have to say. Understand that every day is different. Understand that medication may keep symptoms at bay, but that doesn’t mean the disease is gone. Get to know me and my disease. Do not dismiss me. Believe my tears. Care.

I am grateful that my RA is manageable and that my current pain level is low, relatively speaking, of course. I am grateful to have a doctor who looks out for my best interest instead of marking me a statistic, and I wish my fellow sufferers the same for their Christmas wish!

If you have comments or suggestions, I'd love to hear your thoughts below.

*This article is part of a blog carnival hosted by RA Warrior. Read what others have to say about their experience here.

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Bethany from Confessions of an Organized Homeschool Mom said...

Amen, sister! I don't have RA, but I do have fibromyalgia and chronic fatigue syndrome. My doctor and therapists have similar, ineffective pain scales. And then, after you spend all that time pondering the written stuff, they ask you the same questions again. I say, just skip the written scales altogether!

Jodi Whisenhunt said...

I'm with ya, Bethany! Hope you have a relaxing, pain-free Christmas :)

Rachel said...

I knew I would enjoy and relate to this post in the first paragraph. I have always felt the same way! In addition to RA, I also have fibromyalgia. I have to say, I like your doc's questionnaire. But still, we do build up a tolerance and live with pain many cannot imagine. Perhaps because they cannot handle it. Best wishes to you!

Wren said...

I'm here from RA Warrior. Great post and excellent points. I gotta say, though, that I wish my rheumatologist gave me a questionaire like yours that asks for my pain levels during various daily tasks. Instead, I'm only asked how my pain is, 1-10, at the time of the appointment. I have to be assertive and tell him how my pain has been affecting me prior to the appointment. To his credit, he DOES listen, and he's great about prescribing pain meds as necessary. But even so, there are times when I feel like all I do is complain, so I under-report my pain. I'm not sure how we fix the problem. It's not only our docs who can't really understand our pain and how it affects our daily lives, it's our loved ones, our friends and our acquaintances, as well. No one can truly understand another's pain.

Patricia said...

Hi Jodi!! I'm a new subscriber and trying to catch up a bit on your most recent posts.

I despise the pain scale my rheumatologist wanted me to complete with each visit. It not only wants ask that we rate our pain on a scale of 1-10, but it's broken down into half-points. I've asked him to tell me the difference between a 4, a 4.5, and a 5...and so on...and he can't. It's such a waste of time. I've been pleasantly surprised that I haven't been asked to complete one since.

My RA is still unmanageable - I've been in a continuous flare for over a year - but some days are better than others, and how I would complete a pain scale assessment would likely only reflect how I felt at that moment. A useless assessment.

I, too, am "blessed" to have RA. It's the blessing of being in need and knowing the sweet presence of the Lord who always meets me at every turn.

Jodi Whisenhunt said...

Hi, Patricia! Thanks for joining me here! Pain scales just make no sense, do they? I'm glad to hear your RA is manageable, and I hope that prolonged flare subsides soon. It is difficult to communicate pain properly when you're so used to it. I hope your doc is compassionate and understanding!

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