Proving Painsomnia is Real: A Case Study
By Keynote ContributorsDawn Gibson and Dr. Ben NowellAnkylosing spondylitis patient, member of CreakyJoints®
Director of Patient-Centered Research, CreakyJoints and
co-principal investigator of ArthritisPower® Research Registry
Director of Patient-Centered Research, CreakyJoints and
co-principal investigator of ArthritisPower® Research Registry
Living with Painsomnia
It doesn’t matter if it is 11pm or 2am. Anyone seeking solidarity during a long night awake with pain can find a virtual friend on the Twitter #Painsomnia hashtag or by mentioning it on other tags frequented by people living with a chronic disease.
Painsomnia is a patient-generated term for the vicious cycle of pain and sleep deprivation or fatigue related to a chronic condition or its treatment. Evolving from social media discussions, painsomnia is a shorthand description that helps people relate to each other in posts about being prodded awake by pain and being unable to find a comfortable position in bed or to “settle down” for sleep and rest. Anxiety and frustration about lack of sleep and its impact on functioning the next day often accompany patients’ painsomnia experiences and virtual discussions.
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