Mengshoel Anne Marit, Norheim Katrine B, Omdal Roald
University of Oslo, Oslo, Norway.
Arthritis Care Res (Hoboken). 2014 Aug;66(8):1227-32. doi: 10.1002/acr.22263.
To examine how fatigue may differ from ordinary tiredness in patients with primary Sjögren's syndrome (SS).
A purposive, heterogeneous sample of individuals with primary SS who had participated in a study that examined the effects of medication on fatigue was asked to participate in individual interviews. Patients were asked about their fatigue before and after the onset of illness, changes due to medications, and how fatigue was experienced in daily life. An inductive thematic analysis founded on a social constructionist perspective was performed.
Five women and 4 men ages 27-76 years participated. Two themes were identified. "A heavy, resistant body and ever-present lack of vitality" represented a profound, ever-present lack of energy along with an unfamiliar bodily heaviness quite different from the experience after alleviation by the drug and being healthy. The patients had scaled down their everyday life in different ways to manage this lack of energy. "Unpredictable and uncontrollable fluctuations in fatigue" expressed how the level of fatigue fluctuated from day to day and even within a particular day. The informants tried to portion out their energy without knowing exactly how much energy they would have at any time. On bad days, patients felt that their "batteries were flat," and they had to put their life on hold.
Fatigue in primary SS clearly differs from ordinary tiredness. Patients describe it as an ever-present, fluctuating, and nonrelievable lack of vitality being beyond one's own control.
探讨原发性干燥综合征（SS）患者的疲劳与普通疲倦有何不同。
邀请曾参与一项研究药物对疲劳影响的原发性SS患者组成一个有目的的异质性样本，进行个体访谈。询问患者发病前后的疲劳情况、药物引起的变化以及日常生活中疲劳的感受。基于社会建构主义视角进行归纳主题分析。
5名女性和4名男性参与，年龄在27 - 76岁之间。确定了两个主题。“沉重、抗拒的身体以及持续存在的活力缺失”代表着一种深刻、持续存在的能量匮乏，以及一种与药物缓解后和健康时的体验截然不同的陌生身体沉重感。患者以不同方式缩减了日常生活以应对这种能量匮乏。“疲劳的不可预测和无法控制的波动”表达了疲劳程度如何每天甚至在特定一天内波动。受访者试图分配自己的能量，但并不确切知道自己随时会有多少能量。在糟糕的日子里，患者感觉自己“电量耗尽”，不得不搁置生活。
原发性SS患者的疲劳明显不同于普通疲倦。患者将其描述为一种持续存在、波动且无法缓解的活力缺失，超出自身控制。
