Along with trouble with mobility and moving joints, patients also emphasized fatigue and said that this was often one of the first signs of a flare coming. Many felt fatigue interfered more with quality of life than pain. “One of the first things that patients told us was that when they start to go into a flare … they … stop everything other than work to conserve energy,” says Dr. Bartlett.
“Depending on the severity of the flare, I may disengage from social activity and will do anything to keep working,” says Ms. Leong.
Dr. Bingham
Dr. Bingham points out that symptoms, including fatigue, that clinicians routinely address in assessing disease activity are important to patients because they affect such everyday activities as brushing their hair, opening doors and being able to fulfill important roles as a parent. “These are the things patients care about and change when they are flaring [that] they want us to measure,” he says, adding that this shows that the current metrics used for RA (e.g., disease activity score [DAS]) in clinical practice and research really do not reflect many of the things patients care about.
Lessons learned from that study, says Dr. Bartlett, are that patients are pretty good at managing their flares (e.g., by eliminating unnecessary activity, sleeping more, increasing medications as agreed with their doctors) and that they seek out their physician when self-management strategies no longer work.