When you experience pain due to rheumatoid arthritis (RA), it affects every part of your life, including sleep. When RA or your pain is not well controlled, it can cause sleep disturbances. Unfortunately, there isn’t a lot of talk in clinical practice about this aspect of living with pain, but this is about to change. Efforts from the community of people living with chronic illness have brought the problem of painsomnia into the light.
What is painsomnia?
“#Painsomnia is a patient-generated term for issues with sleep or rest related to chronic pain or its treatments,” said Dawn M. Gibson, an advocate for people living with chronic illness. In an email interview with HealthCentral, Dawn explained that there are two general kinds of painsomnia. One “prevents sleep by making it impossible to find a comfortable position or settle down,” the other “interrupts sleep when pain breaks through the sleep cycle.”
The term painsomnia has a unique origin. It was coined by people with RA — and other conditions causing chronic pain — who found themselves connecting with one another on social media. Dawn explained that it is “an innovative creature of social media advocacy and support groups where patients gather as peers.” She said the definition and discussion around the issue came out of the “frustration and worry that many feel around sleep,” which has a serious impact on quality of life.
Leading the conversation
Dawn is a patient advocate, writer, and consultant. She explained that when she founded the Spoonie Chat online community in 2013, it was with the goal of helping “rheumatology patients with self-care and [to] cultivate disability positive identities.” She herself lives with ankylosing spondylitis, a form of autoimmune arthritis. Dawn lives in metro Detroit and has a background working with youth and in young adult chaplaincy. She also enjoys raising butterflies.
Although sleep deprivation is getting attention as a public health issue, Dawn said that “prescriptive sleep hygiene doesn’t address the barriers that chronic pain or other aspects of illness pose to adequate sleep.” She said that it is not enough to advise individuals to “just get some sleep,” when your body is not cooperating due to the effects of chronic illness and pain.
The 2018 meeting of the American College of Rheumatology (ACR) created a new initiative called the Patient Perspectives Poster Program, which invited individuals living with rheumatic diseases to share their stories at the gathering. Sponsored by CreakyJoints, Dawn co-authored a poster on painsomnia with Shelley Fritz and Kristine Carandang, then brought it to the 2018 ACR meeting.
The painsomnia poster
One of the problems in generating discussion and research is the lack of data on painsomnia and tools to track it. The ACR poster aimed to get the process started.
Shelley Fritz, one of the co-authors of the poster, used the ArthritisPower app to track her symptoms once or twice a week. (1) She also completed assessments from the National Institutes of Health related to pain interference, sleep disturbance, and fatigue. This provided her with the opportunity to identify potential patterns between painsomnia and other factors in her life.
“Understanding a patient’s rate of sleep disturbance matters,” said Dawn. “Painsomnia may mean that disease or pain aren’t … controlled as well as they possibly could be and therefore, new intervention might be needed.” Using tracking apps, such as ArthritisPower, gives you an organized way to share your symptoms with your doctor.
Advocating at ACR
Presenting at ACR was both exciting and exhausting. “It feels great that five years of hard work sowing seeds on Twitter has taken root, in real life, off of social media,” Dawn said.
Attending the conference also enabled her to continue advocating. It “allowed me to speak directly to researchers about one of my main concerns, which is racial disparity in research studies.” Dawn said. She explained that African-American women with ankylosing spondylitis experience “serious barriers to diagnosis, treatment, and suffer a more serious course of the disease. This is something researchers needed to hear and it was an honor to perform this task.”
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The Spoonie Chat community meets virtually most Wednesday evenings from 8-9:30 PM ET on Twitter for a guided conversation hosted by Dawn, using the hashtag #SpoonieChat. You can also find support in the Spoonie Chat Facebook group.