What causes fibromyalgia? An online survey of patient perspectives (original) (raw)
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Patient perspectives on the impact of fibromyalgia
Patient Education and Counseling, 2008
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.
A qualitative exploration of the experiences of living with and being treated for fibromyalgia.
Health Psychology Open, 2017
This study explores the life and treatment experience of people in the United Kingdom with fibromyalgia in order to inform the development of treatments which are both effective and acceptable to users. Qualitative interviews were conducted with 14 participants with interpretative phenomenological analysis used as the theoretical framework and analytical method. The themes identified were as follows: Inauthenticity of fibromyalgia, An Unconventional healthcare experience, Re-creating support networks, Challenging the working identity, Threatening the family dynamic and Fighting, accepting or accommodating? The biopsychosocial impacts of fibromyalgia disrupted the identity, lifestyle, roles and relationships of our participants with such challenges further exacerbated by the contested nature of the illness.
Proceedings of the 2nd International Conference on Intervention and Applied Psychology (ICIAP 2018), 2019
Fibromyalgia (FM) is a chronic illness characterized by pain that spreads throughout the body, accompanied by other symptoms. In general, fibromyalgia sufferers experience fatigue, mood disorders, dizziness, sleep disturbances, and difficulty in concentrating. Other symptoms are also often found in people with fibromyalgia, such as impurity, headaches, and intestinal irritation. Individuals with fibromyalgia are usually reported to have a decreased quality of life, decreased functioning status, and make greater demands on health services. This study was conducted using qualitative methods for pain management, coping with stress, and quality of life for women with fibromyalgia. In addition, this research can help provide an overview of fibromyalgia sufferers as the illness relates to psychological conditions and efforts to overcome changes that occur both physically and psychologically. The method used was in-depth interviews conducted on five women with fibromyalgia with an age range of 25-55 years.
Pain Medicine, 2012
Objective. To compare fibromyalgia (FM) and chronic non-specific low back pain (LBP) patients' narratives about symptom onset. This investigation aimed to better understand how patients with FM relate to their pain problem and the physicians in charge of making the diagnosis. Design. Qualitative study. Subjects and Methods. We included 56 female patients with FM and 29 with LBP. Semi-structured interviews were conducted, eliciting patients' representations of symptom onset. Interviews were taperecorded and transcribed, and content analysis was performed. Results. Patients with FM and LBP were comparable for socio-demographic characteristics and pain duration. Content analysis identified five dimensions: psychological issues, somatic concerns, occupational problems, diagnostic issues, and issues related to chronicity. FM patients emphasized psychological issues, as single events and long-lasting distress. Regarding somatic concerns, gynecological events were prominent in FM while LBP patients emphasized accidents, awkward movements, and physical work conditions. Both groups expressed pessimistic views about pain evolution. FM patients reported diagnosis as an area of major uncertainty in an illness perceived as spreading all over the body. Conclusions. The narratives of patients with FM expressed high psychological loads and dramatic connotations and emphasized legitimacy issues. In contrast, patients with LBP stressed overload, wear and tear, and treatment inefficacy. The combination of chronicity and lack of specificity may render FM and LBP prone to raise skepticism in the therapists. Investigating and discussing patients' perceptions allows overcoming the apparent uniformity of patients' complaints. It contributes defining realistic and shared treatment goals and help therapists cope with pain chronicity.
Patients’ views: improving care for people with fibromyalgia
Journal of Clinical Nursing, 2008
Patients' views: improving care for people with fibromyalgia Aim. The purpose of this research is to provide healthcare professionals with patients' views on improving care for people with fibromyalgia. Background. Fibromyalgia is a chronic pain syndrome that often challenges patients and healthcare professionals. Current literature suggests that the people with fibromyalgia are disempowered by their interactions with physicians. Soliciting patients' suggestions for improving care can be helpful in identifying weaknesses and strengths in current physician-patient interactions, and in improving future care. Methods. Forty-two participants with fibromyalgia submitted written responses to open-ended questions about their experiences with physicians, and how care could be improved. Results. Positive interactions with physicians referenced care quality, feelings of respect and patient involvement. Negative interactions included receiving inadequate care, perceiving the physician to be uncaring and lacking knowledge of fibromyalgia. Conclusions. Unlike most research suggests, the majority of patients with fibromyalgia report having positive interactions with physicians. However, suggestions for improving care are similar throughout the literature, reinforcing the need for supportive care, empathetic listening and increased knowledge of alternative treatments. Relevance to clinical practice. Patients' recommendations identified in this study can be implemented by nurses involved in providing supportive care and education to patients with fibromyalgia. Application of patients' recommendations may facilitate the creation of therapeutic alliances and improve patients' satisfaction with care.
Journal of Psychosomatic Research, 2013
Objective: Fibromyalgia (FM) is a chronic musculoskeletal pain disorder characterized by widespread pain. This study focuses on patients' attributions of illness and of symptom onset. Methods: Semi-structured interviews were conducted with 56 women to elicit patients' views on what triggered their FM. The transcripts of the interviews were analyzed using a classical indexing technique to identify key themes. Content analysis was performed by two independent coders. Results: Primary causal attributions fell into five categories: psychological problems (28 respondents); somatic concerns (N=12); violence/abuse during childhood (N=7), gynaecological/obstetrical problems (N=6), and fatigue (N=3). Patients' attributions were internal and external in the same proportions, more frequently unstable than stable, and more often described uncontrollable than controllable. Participants expressed decrements in self-esteem and feelings such as self-blame or despair; global perceptions of persistent pain and long-lasting problems, evoking chronicity and hopelessness; and low perceived control over their lives as well as beliefs that nothing can be done, thus increasing a feeling of guilt and vulnerability. Patients' narratives emphasized disruptive circumstances surrounding symptom onset. Conclusion: Attributions often referred to the psychological dimension of the events surrounding FM onset, even though some of them also had a clear somatic dimension. Many narratives mentioned successive disruptive events and suggested an increasing loss of control. Addressing these illness representations may contribute to tailor the treatment and to help patients gain self-coherency by providing means to understand pain onset but also to guide future behaviours, particularly in terms of adjustment and help-seeking.
Coping with fibromyalgia - a focus group study
International Journal of Qualitative Studies on Health and Well-being
Purpose: Fibromyalgia affects patients' quality of life. Therefore, an essential part of patients' medical management is to develop appropriate coping strategies. This study aimed to obtain a comprehensive picture of patients' cognitive and behavioural strategies to cope with fibromyalgia. Methods: A qualitative design was conducted based on the grounded theory method. Two focus group discussion sessions were held with 15 Israeli women diagnosed with fibromyalgia. A constant comparative analysis method was utilized. Results: The findings of themes related to women's coping with fibromyalgia included: Emotional coping, with two categories: (a) from repression and despair to acceptance and completion, and (b) a range of negative and positive emotions; Practical coping, with three categories: (a) the agonizing process of receiving/internalizing the diagnosis, (b) living with the symptoms, and (c) changing lifestyle; Coping with the social environment, with three categories: (a) sharing vs. concealing, (b) social connection-disconnection, and (c) environmental resources. In addition, we identified a theme on the patients' perceptions of the causes of their fibromyalgia that effect their coping, with three categories: (a) demanding lifestyle; (b) traumatic life events; and (c) personality trait-perfectionism. Conclusion: It would be desirable for rheumatology units to have an interdisciplinary professional team to work together with patients to consider how best to manage and effectively cope with their condition.
Diagnostic experience of patients with fibromyalgia – A meta-ethnography
Chronic Illness
Objective To examine how individuals experience the process and consequences of receiving a diagnosis of fibromyalgia syndrome. Methods A systematic literature search of qualitative studies up to May 2016 was performed. Twenty-eight reports including information on patients’ diagnostic experiences were subjected to an interpretive analysis in accordance with the principles of meta-ethnography. Results Years were normally spent consulting specialists in an attempt to confirm the reality of symptoms and make sense of the illness. Great relief was felt at finally achieving the fibromyalgia syndrome diagnosis. However, relief waned when therapies proved ineffective. Health professionals and others questioned whether individuals were genuinely ill, that the illness had a psychological nature, and whether they were doing their best to recover. The diagnosis did not provide a meaningful explanation of individuals’ suffering and had limited power to legitimate illness. Patients felt blamed ...