If you either live with or study a rheumatological disease, then you know that pain is a ubiquitous symptom and an essential factor in evaluating disease activity. “Pain is a most important indicator of clinical status in rheumatoid arthritis (RA),” Arthritis and Rheumatism. While pain is the most obvious sign that something is not right, it is the least obvious to observers. And that can be a barrier to receiving needed care.
Researchers have learned that quantitative pain assessments are extremely valuable in routine rheumatology care. “Quantitative data concerning pain cannot be obtained from any source other than the patient. Quantitative assessment of pain at each visit in routine rheumatology care, along with the assessment of functional disability, global status, and other patient variables, using a patient self report questionnaire might lead to improved patient care,” Clinical and Experimental Rheumatology.
Pain scales (quantitative pain assessments) are troublesome
Reading questions about pain scales from Jackie and others, I realized that exploring pain scales with rheumatological diseases is a subject which needs a lot more attention. So, when my elder daughter got home from college, she worked with me to create a pain scale image that suggests adding relatable events would be better than just frownies (un-smilies) or the numbers 1 through 10 of a visual scale.
Meanwhile, it occurred to me, “When else do we ask people to just point to something in order to communicate?”
- Toddlers might point when they don’t know the words to use.
- When there is a language barrier.
Come to think of it… Both are true with pain scales!
- We need better language to use to communicate pain levels.
- There is a language barrier with regard to pain.
So I wrote about problems with pain scales and asked others to blog about their ideas!
How can we cross the pain scale language barrier and better communicate? Let’s hear from the experienced users of pain scales! I hope you’ll visit each post!
Lauren at Unguided Missile wrote Pain Scales. How many times has my family heard me say, “If only pain were a color”? If anyone has ever wished pain could be seen, they will love Lauren’s post. She hits the nail on the head again simply: “It’s not so simple as how much it hurts. It’s how much does the pain take away from your life.” This is what I’ve said over and over again to both of the rheumatologists I’ve had. #TruDat
Cassandra at Beauty for Ashes wrote Pain Scales… Why We Love to Hate Them. Cassandra describes why it’s difficult for those with rheumatic diseases to explain pain to friends or doctors, even using specially designed pain scales. “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!” However, she points out that pain scales could be useful to track the experience of a single patient, especially if they’re used regularly or between medical appointments. When “our physicians understand the differences in our individual cases, scales to rate the pain can be useful.”
Jodi at Aim for Perfection Editing wrote How Do You Edit Pain? Jodi says we should consider editing the pain scale or in fact “DELETE” it! While I understand the need for measuring disease activity, I was moved by her plea for compassion; it reminded me of my wondering whether doctors should love patients. Jodi wrote: “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.”
Dana of At the Water’s Edge wrote Rate Your Pain. Dana distinguishes between “soreness” and being “in pain;” also she separates the issue of the constancy of pain. She offers a diagram to help us distinguish the various components that contribute to pain. This is an excellent step. Improving communication about pain is the heart of the matter.
Note that like many others, including yours truly, Dana used a “9” to rate the worst pain she ever experienced, regardless of its medical implications, as if “10” means “Don’t go there.” She moderated her answer as if she assumed that “10” is an answer that is considered unreasonable.
Linda at Rheumatoid Arthritis –Combating Pain wrote Need For a Accurate Pain Scale For RA. Linda recommends The Comparative Pain Scale by Jack Harich. She believes that rheumatologists and medical professionals could certainly assist us better if there were better ways to communicate about our pain.
Jennifer at The RA Vegan wrote Thoughts on Pain Scales and RA. Jennifer’s pain scale adds words to the numbers one through ten, to add significance to each level. One significant thing to notice is that her “one” is a level of pain that is low enough to ignore. It is not pain-free. Pain-free could be zero, but some level of pain is assumed which seems typical of people living with RA. Her pain scale is written in terms of her mothering experience, but as she explains, it is still about pain because of the way that “the pain I deal with impacts my life.”
Jeanette at Renplus wrote It’s all in your head — NOT! Jeanette explains the frustrations with communicating pain: it’s usually invisible and many people have difficulty communicating about it. She suggests that communication is the solution to the imprecision and subjectivity of pain measurement: “People need to communicate to their medical professionals completely and honestly how they feel. Medical professionals need to document the patient’s communication and ask for clarification with compassion.”
Megan at Objects in Mirror are Closer than They Appear wrote (Almost) Wordless Wednesday: Pain Scale for the Vain Girl. She created a visual pain scale called “Pain Scale (through Shoes).” She agrees with others who remind us that those of us with a “continuous level of pain” often develop a “new normal.’”
Rachel at A Happier Mommy wrote One Size Fits All. She suggests that pain could be rated with questions better than with numbers. The bottom line is trust and honesty between patients and doctors: “In all honesty, unless you have a doctor who is willing to really listen and get to know you, there is no perfect pain scale. Everyone is different and carries a different pain tolerance and response.”
Kirsten at Not Standing Stills Disease wrote The Medieval Pain Scales. She thinks life might be better without pain scales with “those damn faces mocking your pain.” Her great idea is for a doctor to provide patients with a copy of the pain chart. Then each patient can keep “a general record of your pain for a month or longer before your appointment, according to the chart. Then, when you are asked what you current pain level is, you should be keeping this chart in mind.”
Nicole at The Confirmed Ache wrote Pain Scales. She discusses how important it is to pay attention to the messages of one’s body, especially pain. She suggests patients find a scale they like and use it to help know when it’s time to take medication or seek care: “I would definitely recommend a pain scale, especially for those who are newly diagnosed. I think it’s good to rate your pain and keep track.”
AfternoonNapper at The Afternoon Nap Society wrote On A Scale of 1 to 10, How Would You Rate Your Pain? AfternoonNapper hones in on the problems of subjectivity and relativity of pain: “The healthcare professional doesn’t truly know me, and I don’t know him or her. The healthcare professional can not ask, ‘So how does what you’re feeling now compare to that time I stepped on a rusty nail and had to go get a tetanus shot?’” Like so many of us, partly due to fears about perceptions, she avoids using of the highest pain rating: “I reserve a ten for a pain that I have not yet experienced” even though she has been “cut in half sideways for elaborate bypass surgery.”
Hurt Blogger at The Hurt Blogger wrote Evaluating the 1-10 Pain Scale. Hurt Blogger shares the intellectual process that occurs when she is asked to rate her pain. Like my daughter and I did when we created our pain scale, she provides relatable events for each number on a pain scale. However, she adds this terrific idea: Rheumatologists and pain specialists should have patients complete a worksheet which details personal experiences to which patients relate various pain levels. This can be kept in the front of the chart with updated pain scale replies.
I think this could go a long way toward helping the care-givers know the relevance of the answers patients give. It’s almost like giving them a window into that thought process that occurs in the seconds between the question and the answer: “How do you rate your pain?”
Lene at The Seated View wrote Faces, Earthquakes and Ebola: Making Pain Scales Work in Real Life. Lene addresses the problems with rating pain such as the tolerances we naturally have to pain, the filters we “slap” onto it to reduce its affect on us (brilliant explanation of coping mechanisms), and the different types of pain: “How can you compare the sharp, clean, localized pain of surgery (The Ginsu) with the Dirty Cotton pain of an RA flare?” She compares various visual pain scales, her favorite being those which relate the way the pain interferes with one’s life.
Tanya of Tanya Martin wrote RAD Pain Scale – Take One. Tanya created her original pain scale for Rheumatoid Autoimmune Disease (RAD) aka Rheumatoid Arthritis (RA). She created a chart that is customized to the types of pain experienced with RA. It is also customizable to specific patients. “I put an example of something they may write to allow family members to see what help they may need during those levels of pain. They may not be able to communicate or think clearly enough ask.” (Click on her chart to enlarge image.)
Amanda at Amanda Gibson wrote Pain Scales. It was a late entry, but I wanted to include it since it has more good advice about communication.
What have we discovered about pain scales?
- Communication is the crucial issue. Better communication about pain levels will lead to better medical care.
- Communication is improved by honesty, trust, and accuracy by each party, patient or care-giver.
- Comparing one person’s responses to another is probably less helpful than comparing the same person’s answers over time.
- Rating pain in the office with a pain scale on a single day, as Jackie said in her question, does not give a complete picture of a person’s pain.
- Does Rheumatoid Arthritis Pain Really Hurt That Much?
- 4 Funny Things about Pain Scale Charts
- Click here to read more rheum blog carnival posts
- List of posts about Rheumatoid Arthritis pain