Patient perspectives on the impact of fibromyalgia

Abstract

Objective-The objective of this study was to elicit and assess important symptom domains and the impact of fibromyalgia on patients' quality of life and functioning from a patient's perspective. The intention was to collect this information as part of an overall effort to overcome shortcomings of existing outcome measures in fibromyalgia.Methods-This was a qualitative study in which six focus group sessions with 48 women diagnosed with fibromyalgia were conducted to elicit concepts and ideas to assess the impact of fibromyalgia on their lives.Results-The focus groups conducted with fibromyalgia patients identified symptom domains that had the greatest impact on their quality of life including pain, sleep disturbance, fatigue depression, anxiety, and cognitive impairment. Fibromyalgia had a substantial negative impact on social and occupational function. Patients reported disrupted relationships with family and friends, social isolation, reduced activities of daily living and leisure activities, avoidance of physical activity, and loss of career or inability to advance in careers or education. Conclusion-The findings from the focus groups revealed that fibromyalgia has a substantial negative impact on patients' lives.Practice Implications-A comprehensive assessment of the multiple symptoms domains associated with fibromyalgia and the impact of fibromyalgia on multidimensional aspects of function should be a routine part of the care of fibromyalgia patients.

Efficacy and safety of milnacipran 100 mg/day in patients with fibromyalgia: Results of a randomized, double‐blind, placebo‐controlled trial

“…Fatigue is one of the most common symptoms associated with fibromyalgia and is sometimes rated by fibromyalgia patients as more disabling than pain (3). Notably, as one of the multiplicity-controlled secondary outcomes in this study, and consistent with previous trials of milnacipran in fibromyalgia (6,7), fatigue was significantly improved with milnacipran compared with placebo, as measured by the self-reported MFI and the energy/vitality domain of the SF-36.…”

“…Patients with fibromyalgia often report substantial impairment in several areas of physical and mental function (3). In addition to the primary outcome responder definition for efficacy that included a clinically meaningful change in physical function, other measures of function that significantly improved with milnacipran compared with placebo included scores on the SF-36 PCS, SF-36 MCS, and SF-36 domains (physical function, physical role limitations, social function, emotional role limitations, mental health, and general health), as well as the FIQ total and FIQ physical function scores.…”

A meta-ethnography of patients’ experience of chronic non-malignant musculoskeletal pain

“…We did not include papers that did not meet our criteria for inclusion, and included an additional nine fibromyalgia studies. 324,327,335,351,352,366,373,377,381 Their synthesis supports important areas of our conceptual analysis, for example the 'conscious awareness' of the body in pain; the unrelenting nature of fibromyalgia; isolation and loneliness; the search for an diagnosis; the ambiguity of diagnosis and loss of legitimacy. It also supports concepts related to moving forward with pain, including listening to the body, accepting loses and re-evaluating life.…”

“…66,312,323,325,326,330-334,336,338,342-345,350,353-358, 362-365,367,372,374,376,379,385-387 Twenty-eight papers (23 individual studies) explored the experience of people with fibromyalgia. 324,[327][328][329]335,337,[339][340][341]346,349,351,352,[359][360][361]366,373,375,377,378,[380][381][382][383][384] A description of these studies is provided in Tables 6 and 7, showing for each study the age range and source of participants, the country where the study was carried out, the method of data collection and the methodology used. …”

A constant conversation: tuning into and harmonizing the needs and priorities of the body and mind

“…Chronic illnesses can have profound effects on people’s lives, including diminished lifeworlds, reduced incomes, withdrawal from social and recreational activities, social isolation, struggles to understand their illnesses, and threats to identity and self-esteem (Arnold et al, 2008; Crooks, 2007; Öhman, Söderberg, & Lundman, 2003; Röing & Sanner, 2015). Over the course of a chronic illness, people can learn to adapt in many ways, including becoming more attuned to their bodies, recognizing signals that the body gives, and reacting to these signals (Chen, 2016; Sångren, Reventlow, & Hetlevik, 2009).…”