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Table 3.3 provides an overview of the current literature focusing on living with Fibromyalgia. This literature will be discussed in further detail to highlight what is known within this area, and the need for future research. In a qualitative study conducted in a rheumatology outpatient clinic, 12 patients were interviewed at medical school which included 11 female and 1 male age range of patients were 20-69 years (Lemp et al. 2009). The qualitative interviews were conducted in the UK, and aimed to understand the patients’ experience of living with this long-term condition (Lempp et al., 2009). Content and discourse analyses were used to analyse the data. The interview guide consisted of four areas, namely the experience of the onset of the illness, the development of FMS following diagnosis, the impact on patients' lives, work and family, and the patients’ expectations and experiences when seeking medical help in primary and secondary care. The study found that patients expected more consultation time and effective treatment than they felt they received. Subjective experiences and objective physical and emotional changes were non-overlapping. This study however, did not explain the associations between these issues, and the explanatory models of patients and staff need to be considered.

The four areas were explored by Lempp et al., (2009), where the themes presented included life changes before and after diagnosis, health identity change, and quality of care. The lack of knowledge about FMS by patients, healthcare providers and the public , Patients expected more consultation time and effective treatment than they received. This study on the experience of living with pain is similar to semi-structured interviews that gather in-depth views on the experiences of living with FMS.

In a recent qualitative study by Cooper and Gilbert (2017) based in South Africa, historical data was collated from n= 15 participants, focusing on the diagnosis of fibromyalgia, the participants were all women aged between 23 and 59 and diagnosis occurred in private healthcare settings . The study conducted in-depth interviews, and narrative analysis was used for data analysis, which is a comparable procedure to those found in other social support literature in the Netherlands and the UK (Dwarswaard et al., 2015, Campbell et al., 2011). The social factors on employment was related to fibromyalgia and musculoskeletal chronic pain conditions, with little attention to the

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influence of informal social support. The findings described fibromyalgia as a chronic illness that is hidden, and is based on a diagnosis of exclusion, which can result in challenges to credibility. Furthermore, the study observed that individuals experience widespread chronic pain that appears to affect their daily living activities. The study limitations included the context of the study, as healthcare in South Africa may be different to the UK, thus limiting transferability to this the UK context.

Many studies have focused on the experience of diagnosis (Armentor, 2017, Matarın Jimenez. et al., 2017, Embuldeniya et al., 2013) with these studies, focusing on other aspects of patients’ experiences, such as social support and effectiveness of medications, rather than understanding pain. Alongside this explorination of what works best for FMS patients in relation to pain (Vincent et al., 2016, Eilertsen et al., 2015) has been explored. Other complex aspects of the condition include living with a chronic condition related to functional disability that affects social and familial relationships. As such, individuals living with chronic widespread musculoskeletal pain experience discuss diminished social, recreational, and community activities, and thus a decrease in the ability to maintain social relationships. Due to the importance of these aspects, further research is required in this area (Sim & Madden 2008). In a qualitative study conducted by Escudero-Carretero,et al( 2010) the experiences of patients with FMS towards the health system and its professionals were explored. Patients with fibromyalgia were included (n=20) including one male. A content analysis was used in the study for delving into patient experience. The participants were recruited through health professionals in the Andalusian Health Service and patients’ associations. The finding of the study were included that, patients describe a difficult experience, with symptoms that may involve incapacity for daily activities. Until knowing their diagnosis, they feel a lack of understanding and also loneliness. They develop different coping strategies, as looking for information or association. The study presents a limitation of not being conducted in the UK, therefore limiting transferability to a UK health context.

The invisibility of the illness creates difficulties for individuals who are affected in terms of work and social activities. A study by Armentor (2017) used a convenience sampling process in a qualitative investigation about women living with FMS. The study was based in a rheumatology clinic, and a snowball sample consisting of 20

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women participated in this study, all 20 women were diagnosed 12 years before the study. Participants were recruited from local rheumatologists’ offices and snowball sampling from the referrals of existing interviewees, and the various approaches used by people with FMS to manage their social roles with others, including family, friends and medical professionals, were explored. The findings suggested that disbelief and a lack of understanding often led participants to avoid social interactions with friends and family, in an attempt to hide from the stigma associated with an invisible and contested illness. Participants reported that the lack of awareness and knowledge about FMS contributed to creating a sense from others that the illness is not real. Awareness and knowledge of FMS did not always relieve stigma. As this study was conducted in the USA, the results may not suitable for trasnferability to the UK population, due to the different healthcare systems and availability of interventions between the two countries. Research is therefore required to capture rich data from a UK based sample of people living with fibromyalgia.

A recent qualitative study by Vincent et al. (2016) explored the characteristics, causes, and management strategies of fibromyalgia flares. A total of 44 participants (30 women and 14 men), recruited from an existing, national registry of patients with fibromyalgia who have been seen at Mayo Clinic in Rochester, USA. Using seven open-ended questions, patients were asked to describe how a flare differs from their typical fibromyalgia symptoms, and how they coped with fibromyalgia flares and the factors associated with flares. Content analysis was used to analyse the results. The authors sought to understand how patients perceived fibromyalgia flares, and what triggers and alleviating factors patients identified for their symptoms. The study found that flares were associated with the avoidance of physical, social, and psychological stimulation. Avoiding activities may indicate a lack of knowledge of or ability to use healthy coping strategies, as for some participants, social interactions were emotionally and physically challenging. There were some inherent limitations in the study, which included the fact that data was collected by text response to the survey, rather than using interviews or focus groups to allow for deeper understanding of the experience. Thus, to avoid such a limitation in this research, qualitative semi- structured interviews can be used in order to gather in-depth information regarding patients’ experiences of their condition. Another limitation of the US-based study was that authors did not specifically conceptualise the flare ups and their fluctuating

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symptoms regarding pain or fatigue level of severity, which are key symptoms of fibromyalgia. Similarly to a number of other studies described, this study was conducted in the USA, and as such, it is important to explore a UK based population given the differences in healthcare between the two countries.

In a qualitative study conducted by Eilertsen et al. (2015) to investigate the fatigue experience of illness, and its impact on daily living across several long term illnesses including fibromyalgia, multiple sclerosis, ankylosing spondylosis, and stroke, interviews were conducted with 95 mixed Northern European participants, comprising 66 women and 29 men. Of which 25 were FMS patients, the interviews were carried out at places chosen by the patients. Similar experiences of fatigue were found across different long-term illnesses in this study. Unpredictable fatigue and sleepiness were commonly expressed with pain and increased stress sensitivity. There was also a lack of energy, which had an impact on social relationships and on how the patients managed their daily activities. All patients felt lack of understanding and disbelief from others. The large variation in how long the participants had suffered from their illnesses may be a limitation of this study. Thus, some differences identified in the analysis might reflect differences in how the interviews were conducted, rather than actual differences between diagnostic groups. The study highlighted the similarity of the experience of pain and fatigue across a number of long-term conditions, and that such symptoms are not specific to fibromyalgia.