School of Health Sciences, Institute of Nursing and Health Research, Ulster University, Co., Antrim, UK.
Department of Physical Education, Faculty of Education Science, University of Cádiz, Cádiz, Spain.
Rheumatol Int. 2018 Mar;38(3):507-515. doi: 10.1007/s00296-018-3932-5. Epub 2018 Jan 16.
Fibromyalgia syndrome (FMS) is a common and complex chronic pain condition. Exercise is recommended in the management of the FMS; however, people with FMS often find exercise exacerbates their condition and causes overwhelming fatigue. The objective of this study was to explore the perceptions of fatigue and sleep dysfunction, and exercise in people with FMS. Three, 60-90 min focus groups were conducted with people with FMS (n = 14). Participants were recruited from patient support groups who had experienced therapeutic exercise in the management of their condition. Focus groups were video and audio recorded and transcriptions analysed for thematic content by three independent evaluators. Fatigue, sleep dysfunction, and pain were universally reported by participants. The over-arching theme to emerge was a lack of understanding of the condition by others. A huge sense of loss was a major sub-theme and participants felt that they had fundamentally changed since the onset of FMS. Participants reported that they were unable to carry out their normal activities, including physical activity and exercise. The invisibility of FMS was associated with the lack of understanding by others, the sense of loss, and the impact of FMS. People with FMS perceive that there is a lack of understanding of the condition among health care professionals and the wider society. Those with FMS expressed a profound sense of loss of their former 'self'; part of this loss was the ability to engage in normal physical activity and exercise.
纤维肌痛综合征（FMS）是一种常见且复杂的慢性疼痛病症。在 FMS 的管理中推荐进行锻炼；然而，患有 FMS 的人常常发现锻炼会使他们的病情恶化，并导致压倒性的疲劳。本研究的目的是探讨 FMS 患者对疲劳和睡眠功能障碍以及锻炼的看法。对 14 名患有 FMS 的患者进行了三次 60-90 分钟的焦点小组讨论。参与者是从患者支持团体中招募的，他们在管理病情的过程中经历过治疗性锻炼。焦点小组进行了视频和音频记录，并由三名独立评估员对转录本进行主题内容分析。疲劳、睡眠功能障碍和疼痛是参与者普遍报告的问题。出现的首要主题是其他人对病情缺乏了解。一个主要的次要主题是巨大的失落感，参与者觉得自从 FMS 发作以来，他们已经从根本上发生了变化。参与者报告说，他们无法进行正常活动，包括体力活动和锻炼。FMS 的不可见性与他人的不理解、失落感以及 FMS 的影响有关。患有 FMS 的人认为，医疗保健专业人员和更广泛的社会对该病症缺乏了解。那些患有 FMS 的人表示，他们对自己的病情感到深深的失落；这种失落的一部分是无法进行正常的体力活动和锻炼。
