This research sought to clarify the role of the self in chronic illness by developing and evaluating several new constructs, which intend to describe the extent to which illness permeates the self-concept. Following the works of Lewin and Asch, the concepts of central and peripheral regions of the self were elaborated to describe the state of illness within the self, termed "illness self-concept". Three subsidiary constructs were introduced to further depict illness self-concept: directionality, pervasiveness, and illness self-consciousness. Directionality refers to whether illness drives the self or self drives illness. Pervasiveness refers to whether illness affects many or few regions of the self. Illness self-consciousness refers to the degree of preoccupation with illness. A 23-item scale was developed to assess illness self-concept (ex= .94), with items addressing each construct. A 14-item scale measuring "illness self-concept support" (ISC Support, ex= .89) was developed to assess whether family and friends reinforce illness as central or peripheral to the self. I hypothesized that illness self-concept relates to adjustment such that the more illness is peripheral to the self, the better the adjustment. My second hypothesis was that personal, interpersonal, and illness-related factors would influence illness self-concept. The third hypothesis was that illness self-concept would predict additional variance in adjustment after controlling for each of these factors. Fibromyalgia patients (n = 109) completed measures of illness self-concept, optimism, ISC support, illness intrusiveness, and functional status. Results supported hypothesis one, indicating that illness self-concept significantly predicted quality of life (R2Δ. = .39) and depression (R2Δ = .24). Results supported hypothesis two, indicating that ISC support, optimism, illness intrusiveness and functional status each contribute to illness self-concept. Results supported hypothesis three, indicating that illness self-concept predicted substantial variance in adjustment even after controlling for personal, interpersonal, and illness-related factors. All three hypotheses were strongly supported, indicating that illness self-concept is an important predictor of adjustment in chronic illness. This study demonstrated that the extent to which illness permeates the self-concept has implications for adjustment in fibromyalgia, and may be an important variable in improving psychological adjustment in other chronic illnesses.

<p>The purpose of this study was to describe how women with fibromyalgia experienced their quality of life. The method used was a literature study with a descriptive design. The search for scientific articles was done by the databases Academic Search Elite, CINAHL, Medline via PubMed and Cohrane Library. The articles were quality-tested and the content studied, resulting in four categories as follows. Research involving the physical aspects of the quality of life showed that sleeplessness, tiredness and pain was commonly occurring symptoms in women’s daily life which affected their life-situation. The symptoms stopped them from planning or actively taking part in social activity. The psychological aspects of quality of life showed that women with fibromyalgia expressed a longing for the life they lived before the disease. The result of the social aspects showed that the women with fibromyalgia wished to spend a lot of time with their families and expressed how important it was. Fybromylagia also had negative effects on their relationships and divorce was not unusual. Work was highly prioritised and estimated as stimulating. The lack of specific symptoms of the disease made the women questioned by people in their environment and by health-personnel. The positive sides of the disease was found in the existential aspects. The women started to reflect about their duties in life and learned how to prioritise in a proper way.</p> / <p>Syftet med denna studie var att beskriva hur kvinnor med fibromyalgi upplevde sin livskvalitet. Metoden som användes var en litteraturstudie med beskrivande design. Sökningen av vetenskapliga artiklar skedde i databaserna Academic Search Elite, CINAHL, Medline via PubMed och Cohrane Library. Artiklarna kvalitetsbedömdes, innehållet studerades och resulterade i fyra kategorier. Forskning rörande den fysiska aspekten av livskvalitet visade att sömnlöshet, trötthet och smärta var vanligt förekommande symtom i kvinnornas vardag som påverkade deras livssituation. Symtomen hindrade dem från att planera eller aktivt delta i sociala aktiviteter. De psykiska aspekterna inom livskvaliteten visade att kvinnor med fibromyalgi gav uttryck för en längtan efter det liv de levt innan sjukdomen. Resultat tillhörande den sociala aspekten visade att kvinnor med fibromyalgi hade en önskan av att få spendera mycket tid tillsammans med familjen och uttryckte hur viktig den var. Sjukdomen fibromyalgi hade också en negativ inverkan på förhållande och skilsmässa var inte ovanligt. Arbete prioriterades högt och arbetslivet uppskattades som stimulerande. Bristen på ett synligt symtom på sjukdomen fibromyalgi gjorde att kvinnorna blev ifrågasatta av personer i omgivningen och sjukvårdspersonal. Under de existentiella aspekterna föll de positiva sidorna med sjukdomen fibromyalgi in. Kvinnorna började reflektera över måsten och plikter i livet samt lärde sig att prioritera på ett bra sätt.</p>

The purpose of this study was to describe how women with fibromyalgia experienced their quality of life. The method used was a literature study with a descriptive design. The search for scientific articles was done by the databases Academic Search Elite, CINAHL, Medline via PubMed and Cohrane Library. The articles were quality-tested and the content studied, resulting in four categories as follows. Research involving the physical aspects of the quality of life showed that sleeplessness, tiredness and pain was commonly occurring symptoms in women’s daily life which affected their life-situation. The symptoms stopped them from planning or actively taking part in social activity. The psychological aspects of quality of life showed that women with fibromyalgia expressed a longing for the life they lived before the disease. The result of the social aspects showed that the women with fibromyalgia wished to spend a lot of time with their families and expressed how important it was. Fybromylagia also had negative effects on their relationships and divorce was not unusual. Work was highly prioritised and estimated as stimulating. The lack of specific symptoms of the disease made the women questioned by people in their environment and by health-personnel. The positive sides of the disease was found in the existential aspects. The women started to reflect about their duties in life and learned how to prioritise in a proper way. / Syftet med denna studie var att beskriva hur kvinnor med fibromyalgi upplevde sin livskvalitet. Metoden som användes var en litteraturstudie med beskrivande design. Sökningen av vetenskapliga artiklar skedde i databaserna Academic Search Elite, CINAHL, Medline via PubMed och Cohrane Library. Artiklarna kvalitetsbedömdes, innehållet studerades och resulterade i fyra kategorier. Forskning rörande den fysiska aspekten av livskvalitet visade att sömnlöshet, trötthet och smärta var vanligt förekommande symtom i kvinnornas vardag som påverkade deras livssituation. Symtomen hindrade dem från att planera eller aktivt delta i sociala aktiviteter. De psykiska aspekterna inom livskvaliteten visade att kvinnor med fibromyalgi gav uttryck för en längtan efter det liv de levt innan sjukdomen. Resultat tillhörande den sociala aspekten visade att kvinnor med fibromyalgi hade en önskan av att få spendera mycket tid tillsammans med familjen och uttryckte hur viktig den var. Sjukdomen fibromyalgi hade också en negativ inverkan på förhållande och skilsmässa var inte ovanligt. Arbete prioriterades högt och arbetslivet uppskattades som stimulerande. Bristen på ett synligt symtom på sjukdomen fibromyalgi gjorde att kvinnorna blev ifrågasatta av personer i omgivningen och sjukvårdspersonal. Under de existentiella aspekterna föll de positiva sidorna med sjukdomen fibromyalgi in. Kvinnorna började reflektera över måsten och plikter i livet samt lärde sig att prioritera på ett bra sätt.

The purpose of the current study was to develop a manualized treatment for fibromyalgia syndrome (FM) and to examine the efficacy of the treatment in a randomized controlled clinical trial. FM is a chronic musculoskeletal pain disorder characterized by tender points and generalized pain. Depression, chronic fatigue, and sleep disturbance are common. A biopsychosocial model served as a framework for understanding FM by integrating psychological, social, and physical factors. Cognitive-behavioural therapy (CBT), an empirically validated treatment for arthritis, has also been used with FM patients in an attempt to improve pain control, reduce disability, and increase self-efficacy. Overall, the attention/placebo controlled studies employing CBT as a treatment for FM show that it is not superior to a credible attention placebo. The current study attempted to combine the necessary components of CBT with interpersonal therapy to address relational patterns and personality characteristics that can affect ability to cope with chronic pain. One hundred and five women diagnosed with FM by a rheumatologist were randomly assigned to the CBT-interpersonal treatment condition or an attention-control condition. There were 8 treatment groups with a mean of 6-7 participants in each. The treatment consisted of weekly 2-hour sessions over 8 consecutive weeks. Outcome measures included: FM impact, pain, health care utilization, depression, coping, and self-efficacy. An intention-to-treat analysis was conducted. Results showed that the impact of FM symptoms was reduced following treatment compared to the control group and this was statistically and clinically significant, but was not maintained at 3-month follow-up. Significant improvements were also observed in coping strategies, some of which were maintained at follow-up. Importantly, self-efficacy improved significantly following treatment compared to the control group. Self-efficacy beliefs have been related to pain, coping efforts, disability, and psychological functioning. Directions for future research may include a focus on long-term maintenance of treatment gains that may be mediated by improvements in self-efficacy. There is strong evidence that changes in self-efficacy are enduring and affect changes in health behaviours and health status.

Fibromyalgia (FM) is a highly disabling syndrome defined by a low pain threshold and a permanent state of pain. Widespread pain is accompanied by a constellation of symptoms such as fatigue, sleep disturbances and cognitive impairment, among others. The mechanisms explaining this chronic pain remain unclear. Nowadays, the most established/ plausible hypothesis underlying FM ethiopathogenesis is the existence of a dysfunction in pain processing, as supported by alterations in neuroimaging and neurotransmitters levels. The etiology of FM involves the interaction of environmental and genetic susceptibility factors. The genetic contribution to FM has been proven by the presence of a higher concordance of monozygotic than dizygotic twins as well as family aggregation. However, the individual genetic and environmental factors involved have not been identified. The aim of this thesis was to elucidate genetic susceptibility factors for fibromyalgia. We assessed this objective through three main approaches: the identification of FM clinically homogeneous subgroups with a two step cluster analyses, a genome-wide association study in order to evaluate the possible contribution of single nucleotide polymorphisms with Illumina 1 million duo array, and array comparative genomic hybridization experiments to identify regions varying in copy number that could be involved in FM susceptibility,using Agilent 2X400K platform. 48 variables were evaluated in 1,446 Spanish FM cases fulfilling 1990 ACR FM criteria. A partitioning analysis was performed to find groups of variables similar to each other. Variables clustered into three independent dimensions: “symptomatology”, “comorbidities” and “clinical scales”. Only the two first dimensions were considered for the construction of FM subgroups, classifying FM samples into three subgroups: low symptomatology and comorbidities (Cluster 1), high symptomatology and comorbidities (Cluster 2), and high symptomatology but low comorbidities (Cluster 3). These subgroups showed differences in measures of disease severity and were further implemented in genetic analysis. Genome-wide association study was performed in 300 FM cases and 203 controls. No SNP reached GWAS association threshold, but 21 of the most associated SNPs were chosen for replication in over 900 cases and 900 pain free-controls. Four of the strongest associated SNPs selected for replication showed a nominal association in the joint analysis. In particular, rs11127292 (MYT1L) was found to be associated to FM with low comorbidities. Array comparative genomic hybridization detected 5 differentially hybridized regions. They were followed up and one of these regions was validated though a multiplex PCR experiment. An intronic deletion in NRXN3 showed to be associated to female cases of FM and in particular those with low levels of comorbidities. Replication analysis showed a stronger association when considering only female cases and controls and low comorbidities. This enhance the importance of gender in FM etiopathogenesis and could be pointing to the existence of a different genetic background for FM in males and females highlights the importance of identifying FM homogeneous subgroups for the detection of FM genetic susceptibility factors. If the proposed FM candidate genes are further validated in replication studies, this would constitute a change in the FM ethiologycal concept, as several of these candidates are known neuropsychiatric disease associated genes (autism, addiction, mental disability). This would highlight a novel neurocognitive involvement in this disorder, currently considered musculoskeletal and affective. / La fibromialgia (FM) es una enfermedad de etiología desconocida que se caracteriza por dolor crónico generalizado, junto a una amplia constelación de síntomas acompañantes. La base etiopatogénica que explica este estado permanente de dolor es aún desconocida. Hasta la fecha la teoría más plausible es la existencia de una disfunción en la transmisión del dolor. Los estudios familiares han mostrado una considerable agregación familiar en FM,sugiriendo la importancia de los factores genéticos en el desarrollo de estos cuadros. Con la presente tesis se ha pretendido estudiar e identificar variantes del genoma (polimorfismos de base única (SNPs)- y variantes en el número de copia –CNVs) asociadas a FM, con el objetivo de profundizar en la etiología de la enfermedad. Para ello, se han llevado a cabo tres grandes aproximaciones: la identificación de subgrupos clínicos homogéneos de FM mediante un análisis de clusters, un estudio de genoma completo (GWAS) para el análisis directo de SNPs y experimentos de hibridación genómica comparada mediante arrays (aCGH) con el fin de identificar regiones variables en el número de copia asociadas a FM. El análisis de clusters ha permitido la identificación de tres subgrupos de FM en función de los niveles de sintomatología y de comorbilidad personal y familiar. Los resultados del GWAS indican una posible contribución del sistema nervioso central en el desarrollo de FM, ya que las enfermedades neurológicas aparecen como sobrerrepresentadas en el estudio de pathways realizado en los SNPs que presentaban mayor asociación, y un SNP en el gen MYT1L ha presentado asociación estadísticamente significativa con FM con niveles bajos de comorbilidad, poniendo de manifiesto la importancia de identificar subgrupos clínicamente homogéneos para la detección de factores de susceptibilidad genética para FM. Un CNV en el gen neurexina3 ha mostrado, asimismo, asociación en mujeres con FM, y en particular, en aquellas con bajos niveles de comorbilidad, siendo un nuevo argumento a favor de la implicación del SNC. La confirmación de las variantes detectadas en nuevas cohortes de fibromialgia supondría un giro conceptual de la enfermedad hacia una visión más neurocognitiva que osteomuscular.

The purpose of the current study was to develop a manualized treatment for fibromyalgia syndrome (FM) and to examine the efficacy of the treatment in a randomized controlled clinical trial. FM is a chronic musculoskeletal pain disorder characterized by tender points and generalized pain. Depression, chronic fatigue, and sleep disturbance are common. A biopsychosocial model served as a framework for understanding FM by integrating psychological, social, and physical factors. Cognitive-behavioural therapy (CBT), an empirically validated treatment for arthritis, has also been used with FM patients in an attempt to improve pain control, reduce disability, and increase self-efficacy. Overall, the attention/placebo controlled studies employing CBT as a treatment for FM show that it is not superior to a credible attention placebo. The current study attempted to combine the necessary components of CBT with interpersonal therapy to address relational patterns and personality characteristics that can affect ability to cope with chronic pain. One hundred and five women diagnosed with FM by a rheumatologist were randomly assigned to the CBT-interpersonal treatment condition or an attention-control condition. There were 8 treatment groups with a mean of 6-7 participants in each. The treatment consisted of weekly 2-hour sessions over 8 consecutive weeks. Outcome measures included: FM impact, pain, health care utilization, depression, coping, and self-efficacy. An intention-to-treat analysis was conducted. Results showed that the impact of FM symptoms was reduced following treatment compared to the control group and this was statistically and clinically significant, but was not maintained at 3-month follow-up. Significant improvements were also observed in coping strategies, some of which were maintained at follow-up. Importantly, self-efficacy improved significantly following treatment compared to the control group. Self-efficacy beliefs have been related to pain, coping efforts, disability, and psychological functioning. Directions for future research may include a focus on long-term maintenance of treatment gains that may be mediated by improvements in self-efficacy. There is strong evidence that changes in self-efficacy are enduring and affect changes in health behaviours and health status.

Syftet med studien var att beskriva hur kvinnor med fibromyalgi upplever vårdpersonalens bemötande och hur de önskar att bli bemötta. Studien hade en kvalitativ ansats med en beskrivande design. Datainsamling skedde genom individuella intervjuer med åtta kvinnor, som alla var medlemmar i en fibromyalgiförening i Mellansverige. Data analyserades med hjälp av manifest innehållsanalys. Huvudresultatet var att vårdpersonalens bemötande av informanterna beskrevs som en upplevelse av att inte bli bekräftad. Detta grundades i deras upplevelse av att vårdpersonalen inte trodde, eller lyssnade på dem. De upplevde även att kunskapen om fibromyalgi hos vårdpersonalen var bristfällig. Informanterna beskrev även att de upplevde att de kunde känna förtroende för vårdpersonalen men att de önskade att de i större grad blev bemötta så.  De beskrev en önskan om att vårdpersonalen i högre grad skulle lyssna på dem, visa förståelse och ge dem information om sin sjukdom. Slutsatsen var att känna förtroende för vårdpersonalen bygger på att bli lyssnad till och få förståelse för sin sjukdom av vårdpersonalen samt att få information. Att bli misstrodd och/eller ej lyssnad på av vårdpersonalen samt brist på kunskap hos vårdpersonalen upplevdes som att inte bli bekräftad. / The aim of the study was to describe how women with fibromyalgia experienced health care professionals´ response and how they wish to be responded. The study had a qualitative approach with a descriptive design. Data were obtained from individual interviews with eight women, who were all members of a fibromyalgia association in central Sweden. Data were analyzed using manifest content analysis. The main result was that the informants experienced the health care professionals as not confirming them. This was based on the informants’ experience of not being believed or listened to. They also felt that the knowledge of fibromyalgia among health care professional was poor. The informants also described that they could trust the health care professionals but that they wished that they to a greater extent was responded that way. They described a desire that the health care professionals in greater extent should listen to them, show an understanding and give them information. The conclusion was that the confidence of health care professionals is based on being listened to and to be showed an understanding of their disease and to receive information. To be discredited and / or not being listened to and lack of knowledge among the health care professionals about fibromyalgia was perceived as not being confirmed.

Bakgrund: Det saknas biomedicinsk förklaring till varför fibromyalgi uppstår, vilket gör att patienter idag främst diagnostiseras genom symtombilden som ingår i sjukdomen. Att fibromyalgi består av både fysiska och psykiska besvär och att orsaken är oklar gör att sjukdomen är svårbehandlad. Vid bemötande av denna patientgrupp är det viktigt att ha ett holistiskt synsätt. Syfte: Att belysa aktuell forskning om kvinnors upplevelser av att leva med fibromyalgi. Metod: En litteraturöversikt baserad på tretton vetenskapliga artiklar som har analyserats. Resultat: De främsta huvudsymtomen för kvinnor med fibromyalgi är smärta, trötthet, utmattning, depression, sömnstörningar samt kognitiv nedsättning. Huvudteman som framkommit i studien är En sjukdom som påverkar livet och Att kämpa med sjukvården. Vidare framkom fyra underteman som grundas på sjukdomens begränsningar, som gör att kvinnor måste omstrukturera sin livssituation för att uppnå en livskvalitet. Slutsats: En ökad förståelse för hur kvinnor upplever att leva med fibromyalgi kan bidra till en förbättrad attityd mot denna patientgrupp. Detta kan leda till att kvinnors upplevelser av sjukdomen förbättras. / Background: There is no biomedical reason why fibromyalgia occurs. Today, the patients are diagnosed mainly by the symptoms that are part of fibromyalgia. The cause of fibromyalgia is unclear, and it consists of both physical and psychological problems that make the disease difficult to treat. It is important to have a holistic approach when treating patients with fibromyalgia. Aim: To create an overview of current research of women’s experiences of living with fibromyalgia. Method: The study is designed as a study based on thirteen scientific articles which have been analyzed. Results: The main symptoms for women with fibromyalgia were pain, fatigue, exhaustion, depression, sleep disorders and cognitive impairments. The main themes that have emerged are A disease that affects the daily life and To struggle with the healthcare. Furthermore, the results show four subthemes which were based on that the limitations of the disease demand the women to restructure their life situation achieve quality of life. Conclusion: Increased knowledge and understanding of the experiences of patients living with fibromyalgia, may contribute to a better attitude and a better care for this group of patients. This may lead to improvement of women’s experiences of the disease.

Thesis (Ph. D.)--University of Washington, 2001. / Vita. Includes bibliographical references (leaves 60-72).

The purpose of this study was to determine the prevalence of temporomandibular disorders (TMD) in fibromyalgia (FM) patients compared to failed back syndrome (FBS) patients. In addition, the FM and FBS patients were assessed and compared with regard to their psychosocial dysfunction. The study included 51 adult patients (FM = 32, FBS = 19) recruited from a physical medicine and rehabilitation clinic and a FM workshop. Questionnaires included an orofacial pain questionnaire and a battery of psychological questionnaires that included the Symptom Check List-90-Revised, the Pittsburgh Sleep Quality Index, the Multi-dimensional Pain Inventory, the Post-traumatic Stress Disorder Checklist-Civilian Version, and Multidimensional Fatigue Symptoms Inventoryshort form. Each patient underwent a clinical examination by a dentist who was blind to the diagnostic category and if applicable was diagnosed with TMD based on the Research Diagnostic Criteria for TMD. Fifty three percent of the FM patients reported having face pain compared to 11% of the FBS patients (P=0.002). Of those FM patients who reported face pain, 71% fulfilled the criteria for TMD. The psychometric data revealed that the FM patients had higher scores for somatization (P=0.02) and obsessive-compulsive (P=0.009) subscales compared to the FBS patients. The mean score of medication used to sleep was higher among the FM patients compared to FBS patients (P=0.002). Eighty seven percent of the FM patients reported a stressful event (P=0.036). Of those FM patients who reported a stressful event 42.3% were deemed post-traumatic stress disorder positive. FM patient also had higher scores for general fatigue (Pandlt;0.0001), emotional fatigue (P=0.008), physical fatigue (Pandlt;0.0001) and mental fatigue (Pandlt;0.0001) as compared to FBS patients. The high prevalence of TMD and psychosocial dysfunction among FM patients suggests a dysfunctional hypothalamic-pituitary-adrenal axis and dysregulated autonomic nervous system.