It’s 12:43 AM and I am wide awake. Sharp pains shoot through my toes and fingers from nerve pain due to inflammation caused by my rheumatoid arthritis (RA).
If only my legs would stop throbbing and my elbows weren’t so swollen and stiff, I might be able to get back to sleep. I try to adjust my body twenty different ways as I attempt to fall asleep, but it’s no use. I am awake.
It’s a night that is dominated by painsomnia, or being unable to sleep because of pain.
Painsomnia Nights
On a painsomnia night, thirty minutes go by agonizingly slowly. I think, if I can get back to sleep now, I’ll have almost four hours of sleep before I must wake up to get ready for work. But as 2:30 AM approaches, the thought of how little sleep I will now have causes anxiety because I can anticipate the ramifications of sleep deprivation.
Normally I try not to stimulate my brain more by getting on my phone or laptop when I need sleep, but some nights when I’ve tried everything possible, I just need to know someone else is out there. I grab my phone and reach out to my #Painsomnia warriors on the Internet. The best yet saddest part about seeking #Painsomnia in the middle of the night is that I will always find someone who is also in pain and quickly messages me back.
The Painsomnia Community
I learned about “painsomnia” through a #SpoonieChat on Twitter facilitated by patient (and now friend), Dawn Gibson. Chronic pain can make one feel isolated and depressed. Knowing that there are others out there in pain like I am is comforting and somehow helps me know that I can get through that bad night and reach daylight. Through #SpoonieChat sessions, participants share ideas to help cope with chronic pain.
Over time, I realized that my #SpoonieChat community and I were using a term that wasn’t exactly transferrable to our doctors and researchers. We all could describe painsomnia, but it’s not a symptom that is tracked, say in a clinical study looking at how an arthritis medicine works (or doesn’t).
Studying Painsomnia
This year the American College of Rheumatology (ACR) and Association of Rheumatology Health Professionals (ARHP) invited individuals affected by rheumatic disease to submit poster presentations specifically answering the question, “What adaptations did you and/or your healthcare team adopt to better care for your health?” Examples of adaptations ranged from exercise, diet or lifestyle, the impact of support groups, and better patient/physician discussions. With the support of CreakyJoints, the online patient advocacy group for people with all forms of arthritis, Dawn Gibson, myself, and our colleague Kristine Carandang, submitted and had accepted the poster titled, “Using a Mobile App to Facilitate Patient-Doctor Discussions to Make Informed Decisions Regarding Painsomnia.”
Our poster presentation is directly informed by data I’ve collected for the past three years using the ArthritisPower® Research Registry, a free mobile application created by CreakyJoints and the University of Alabama at Birmingham. (Note, I am a Patient Governor for ArthritisPower, meaning I sit on a board of patients who help determine research studies conducted in the app.)
Those who use ArthritisPower can choose from over 80 different, validated measures that track your experience of symptoms and treatment over time. These measures, also called Patient Reported Outcomes (PROs), are the same as a physician would use during an appointment, but the benefit of using ArthritisPower is that you can build a picture of your disease state over time. ArthritisPower users also donate their PROs to the research registry and can participate in voluntary studies in app.
Related to painsomnia, for three years I had been tracking my pain, fatigue, and sleep disturbance levels in the app. The collected data graphically demonstrated fluctuations in sleep quality over weeks or months. Therefore, my research team and I could see that over time, the days when I slept worse or felt more tired were linked to days I had more pain. Painsomnia also hit during times that I reported more flare ups and illness or used steroid medications. We presented these findings to rheumatologists attending the 2018 ACR meeting, thereby increasing awareness of painsomnia among thought-leading doctors.
Painsomnia Helps Me Be Patient-Centered
The evidence of my disease activity demonstrated in ArthritisPower has helped me to discuss with my rheumatologist how to treat the extreme pain that sometimes occurs at night. When my pain and fatigue levels were at a high point for an extended time, using the data from the app opened up a conversation with my doctor that led to making a change in my medicine.
My rheumatologist also recommended some helpful strategies for getting good sleep. At his suggestion, I adjusted my dinner time, diet, and exercise level, to better prepare my body for getting good rest. As a result, I have had less pain at night, decreased daytime fatigue, and fewer episodes of painsomnia. As a patient, I want to encourage other people with chronic disease to communicate specifically about their experience of disease, so that they can be active in determining the course of their own care.
For more information on ArthritisPower, visit www.ArthritisPower.org
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