Self-care actions to manage fatigue among myasthenia gravis patients.

Fatigue is the most frequently reported symptom by myasthenia gravis (MG)patients. Despite the prevalence of fatigue, treatment protocols are lacking, thus patients are left to self-manage. The purpose of this study was to describe self-care actions used to manage fatigue among patients with MG. A national sample (N = 250) of MG patients responded to two structured instruments. The Fatigue Survey (FS), modified with permission of authors Hubsky and Sears; and the Myasthenia Gravis Fatigue Scale (MGFS). Both instruments were based on the concept of fatigue. Participants identified three major categories of self-managed actions: mental interventions (76%), physical interventions (78%) and rest/sleep (80%). A subset of the respondents (N = 36) reported using aerobic exercise to attempt to relieve fatigue which is usually contradicted with MG. No significant difference in fatigue scores was found between those reporting aerobic exercise to be helpful and those not finding exercise helpful. However, those utilizing aerobic exercise reported the highest functional status categories. A question arises as to whether aerobic exercise is performed by the least ill MG patients, or aerobic exercise improves functional status. When demographic and functional status variables were associated with fatigue scores and selfcare actions, only gender and functional status were significantly correlated with fatigue score. Effective self-care actions include stress reduction techniques, pacing all activities and increased rest and sleep. Further investigation into the role of aerobic exercise is indicated as a self-care action for MG fatigue.