“I'm not the woman I was”: Women´s perceptions on the effects of fibromyalgia on private life

In this qualitative study we explored how gender shapes the women´s experiences of living with Fibromyalgia and how it affects their private lives. Through thematic analysis of data from 13 in-depth interviews in Spain, we identified 7 themes which reflect that these women feel remorse and frustration for not being able to continue to fulfil the gender expectation of caring for others and for the home. This research contributes to a better understanding into what suffering from fibromyalgia implies for women and provides insights into how family and providers can support women with fibromyalgia in order to achieve a beneficial lifestyle.

EULAR revised recommendations for the management of fibromyalgia

Funding The project was funded by EULAR.

Walking as physical exercise in Fibromyalgia: an elicitation study from the Theory of Planned Behavior

Este estudio corresponde a la primera fase de investigación formativa recomendada en la teoría de la Acción Planeada para desarrollar una intervención. Nuestros objetivos son identificar las creencias modales sobre la realización de una pauta de ejercicio en personas con fibromialgia, probar los ítems para la evaluación directa de los constructos predictivos y explorar sus relaciones con la conducta. Evaluamos a 46 mujeres con fibromialgia. El análisis de contenido mostró un mayor número de consecuencias positivas que negativas asociadas a la ejecución de la pauta de ejercicio (creencias comportamentales); la familia y los amigos son los referentes importantes (creencias normativas) y se detectaron factores facilitadores e inhibidores de la ejecución de la conducta de ejercicio, relacionados con aspectos de la fibromialgia (creencias de control) como el dolor, la fatiga y el estado de ánimo. El índice de consistencia interna más bajo fue el de la escala de norma subjetiva (α= .78). Los resultados confirman el sedentarismo de la muestra (conducta previa: Media=3.67; rango=1-7) aunque también sugieren que estas personas tienen intención de realizar la conducta (Media= 5.67). Las relaciones obtenidas entre los constructos son las esperadas desde la teoría, apoyando la pertinencia de aplicarla en la conducta y población seleccionada.

Diet therapy with fodmaps restriction has benefits in fibromyalgia

The effects of a diet restriction in FODMAPs (Fermentable oligo-di-monosaccharides polyols) is being studied on the symptoms of Fibromyalgia (FM) and its impact on quality of life (QOL) besides the effect on gastrointestinal (GI) symptoms. High prevalence of functional GI disorders is found in FM and Low FODMAP Diet has growing scientific evidence as IBS (Irritable Bowel Syndrome) therapy.

A pain neuroscience education program for fibromyalgia patients with cognitive deficits: a case series

Trabalho apresentado na IFOMPT Conference, 4 a 8 de julho de 2016, Glasgow, Escócia

A low fermentable oligo-di-mono saccharides and polyols (FODMAP) diet reduced pain and improved daily life in fibromyalgia patients

Fibromyalgia (FM) is a chronic, rheumatic disease characterized by widespread myofascial pain, of unknown aetiology, having a major impact on quality of life (QOL). Available pharmacotherapy for FM is marginally effective. FM is associated with co-morbidities of gastrointestinal (GI) disorders and Irritable Bowel Syndrome (IBS). There is growing evidence that diets low in FODMAPs, “fermentable oligo-, di- or mono-saccharides and polyols” [Low FODMAP Diet (LFD)], are effective in treating IBS. The aim of this pilot study was to examine the effects of LFDs on symptoms of FM, especially with regard to pain, QOL and GI disorders. Methods A longitudinal study using LFD intervention was performed on 38, 51 ± 10 year-old, female patients diagnosed with FM for an average of 10 years, based on ACR (American College of Rheumatology) 2010 criteria. The study was conducted from January through May, 2015, using a four-week, repeated-assessment model, as follows: Moment 0 – introduction of the protocol to participants; Moment 1 – first assessment and delivery of individual LFD dietary plans; Moment 2 – second assessment and reintroduction of FODMAPs; Moment 3 – last assessment and final nutritional counselling. Assessment tools used were the following: RFIQ (Revised Fibromyalgia Impact Questionnaire), FSQ (Fibromyalgia Survey Questionnaire), IBS-SSS (Severity Score System), EQ-5D (Euro-QOL quality of life instrument), and VAS (Visual Analogue Scale). Daily consumption of FODMAPs was quantified based on published food content analyses. Statistical analyses included ANOVA, non-parametric Friedman, t-student and Chi-square tests, using SPSS 22 software. Results The mean scores of the 38 participants at the beginning of the study were: FSQ (severity of FM, 0–31) – 22 ± 4.4; RFIQ (0–100) – 65 ± 17; IBS-SSS (0–500) – 275 ± 101; and EQ-5D (0–100) – 48 ± 19. Mean adherence to dietary regimens was 86%, confirmed by significant difference in FODMAP intakes (25 g/day vs. 2.5 g/day; p < 0.01). Comparisons between the three moments of assessment showed significant (p < 0.01) declines in scores in VAS, FSQ, and RFIQ scores, in all domains measured. An important improvement was observed with a reduction in the severity of GI symptoms, with 50% reduction in IBS scores to 138 ± 117, following LFD therapy. A significant correlation (r = 0.36; p < 0.05) was found between improvements in FM impact (declined scores) and gastrointestinal scores. There was also a significant correlation (r = 0.65; p < 0.01) between “satisfaction with improvement” after introduction of LFDs and “diet adherence”, with satisfaction of the diet achieving 77% among participants. A significant difference was observed between patients who improved as compared to those that did not improve (Chi-square χ2 = 6.16; p < .05), showing that the probability of improvement, depends on the severity of the RFIQ score. Conclusions Implementation of diet therapy involving FODMAP restrictions, in this cohort of FM patients, resulted in a significant reduction in GI disorders and FM symptoms, including pain scores. These results need to be extended in future larger studies on dietary therapy for treatment of FM. Implications According to current scientific knowledge, these are the first relevant results found in an intervention with LFD therapy in FM and must be reproduced looking for a future dietetic approach in FM.

Expected values for steps/day in special populations

Objective To assemble expected values for free-living steps/day in special populations living with chronic illnesses and disabilities. Method Studies identified since 2000 were categorized into similar illnesses and disabilities, capturing the original reference, sample descriptions, descriptions of instruments used (i.e., pedometers, piezoelectric pedometers, accelerometers), number of days worn, and mean and standard deviation of steps/day. Results Sixty unique studies represented: 1) heart and vascular diseases, 2) chronic obstructive lung disease, 3) diabetes and dialysis, 4) breast cancer, 5) neuromuscular diseases, 6) arthritis, joint replacement, and fibromyalgia, 7) disability (including mental retardation/intellectual difficulties), and 8) other special populations. A median steps/day was calculated for each category. Waist-mounted and ankle-mounted instruments were considered separately due to fundamental differences in assessment properties. For waist-mounted instruments, the lowest median values for steps/day are found in disabled older adults (1214 steps/day) followed by people living with COPD (2237 steps/day). The highest values were seen in individuals with Type 1 diabetes (8008 steps/day), mental retardation/intellectual disability (7787 steps/day), and HIV (7545 steps/day). Conclusion This review will be useful to researchers/practitioners who work with individuals living with chronic illness and disability and require such information for surveillance, screening, intervention, and program evaluation purposes. Keywords: Exercise; Walking; Ambulatory monitoring

Health-Related Quality of Life, Costs and Treatment of Inflammatory Rheumatic Diseases in Routine Practice : With special emphasis on biological drugs

Rheumatoid arthritis (RA) and other chronic inflammatory joint diseases already begin to affect patients health-related quality of life (HRQoL) in the earliest phases of these diseases. In treatment of inflammatory joint diseases, the last two decades have seen new strategies and treatment options introduced. Treatment is started at an earlier phase; combinations of disease-modifying anti-rheumatic drugs (DMARDs) and corticosteroids are used; and in refractory cases new drugs such as tumour necrosis factor (TNF) inhibitors or other biologicals can be started. In patients with new referrals to the Department of Rheumatology of the Helsinki University Central Hospital, we evaluated the 15D and the Stanford Health Assessment Questionnaire (HAQ) results at baseline and approximately 8 months after their first visit. Altogether the analysis included 295 patients with various rheumatic diseases. The mean baseline 15D score (0.822, SD 0.114) was significantly lower than for the age-matched general population (0.903, SD 0.098). Patients with osteoarthritis (OA) and spondyloarthropathies (SPA) reported the poorest HRQoL. In patients with RA and reactive arthritis (ReA) the HRQoL improved in a statistically significant manner during the 8-month follow-up. In addition, a clinically important change appeared in patients with systemic rheumatic diseases. HAQ score improved significantly in patients with RA, arthralgia and fibromyalgia, and ReA. In a study of 97 RA patients treated either with etanercept or adalimumab, we assessed their HRQoL with the RAND 36-Item Health Survey 1.0 (RAND-36) questionnaire. We also analysed changes in clinical parameters and the HAQ. With etanercept and adalimumab, the values of all domains in the RAND-36 questionnaire increased during the first 3 months. The efficacy of each in improving HRQoL was statistically significant, and the drug effects were comparable. Compared to Finnish age- and sex-matched general population values, the HRQoL of the RA patients was significantly lower at baseline and, despite the improvement, remained lower also at follow-up. Our RA patients had long-standing and severe disease that can explain the low HRQoL also at follow-up. In a pharmacoeconomic study of patients treated with infliximab we evaluated medical and work disability costs for patients with chronic inflammatory joint disease during one year before and one year after institution of infliximab treatment. Clinical and economic data for 96 patients with different arthritis diagnoses showed, in all patients, significantly improved clinical and laboratory variables. However, the medical costs increased significantly during the second period by 12 015 (95% confidence interval, 6 496 to 18 076). Only a minimal decrease in work disability costs occurred mean decrease 130 (-1 268 to 1 072). In a study involving a switch from infliximab to etanercept, we investigated the clinical outcome in 49 patients with RA. Reasons for switching were in 42% failure to respond by American College of Rheumatology (ACR) 50% criteria; in 12% adverse event; and in 46% non-medical reasons although the patients had responded to infliximab. The Disease Activity Score with 28 joints examined (DAS28) allowed us to measure patients disease activity and compare outcome between groups based on the reason for switching. In the patients in whom infliximab was switched to etanercept for nonmedical reasons, etanercept continued to suppress disease activity effectively, and 1-year drug survival for etanercept was 77% (95% CI, 62 to 97). In patients in the infliximab failure and adverse event groups, DAS28 values improved significantly during etanercept therapy. However, the 1-year drug survival of etanercept was only 43% (95% CI, 26 to 70) and 50% (95% CI, 33 to 100), respectively. Although the HRQoL of patients with inflammatory joint diseases is significantly lower than that of the general population, use of early and aggressive treatment strategies including TNF-inhibitors can improve patients HRQoL effectively. Further research is needed in finding new treatment strategies for those patients who fail to respond or lose their response to TNF-inhibitors.

Kelan järjestämän kuntoutuksen kohdentuminen ja vaikutukset työkykyyn kunnallisilla työpaikoilla

Tutkimuksessa selvitettiin Kansaneläkelaitoksen (Kelan) järjestämän kuuden yleisimmän työssä käyvälle väestölle tarkoitetun kuntoutusmuodon kohdentumista kuntatyöntekijöille (n = 67 106 henkilöä). Lisäksi selvitettiin Kelan järjestämän tuki- ja liikuntaelinkuntoutuksen ja ASLAKkurssien vaikutuksia työkykyyn sekä verrattiin kahta fibromyalgiaa sairastaville tarkoitettua kuntoutusmuotoa. Muuttujatiedot kerättiin työnantajien omista ja kansallisista rekistereistä. Naiset olivat Kelan järjestämässä kuntoutuksessa yliedustettuina ja määräaikaisessa työsuhteessa työskentelevät aliedustettuina. Selkäkipukuntoutukseen osallistuneiden ja työnantajien palveluksessa seurannan loppuun saakka olleiden vuosittaiset hyvin pitkät sairauspoissaolot vähenivät kolmen kuntoutuksen jälkeisen vuoden ajaksi. Niskakipukuntoutukseen osallistuneilla ei todettu tätä muutosta. ASLAK-kuntoutukseen osallistuneiden sairauspoissaolopäivät ja hyvin pitkät sairauspoissaolokerrat vähenivät kuntoutusvuonna ja kolmena sen jälkeisenä vuonna samalle tasolle kuin kuntoutukseen osallistumattomilla kaltaistetuilla verrokeilla. Työkyvyttömyyseläkkeen riski oli kuntoutujilla neljän kuntoutuksen jälkeisen vuoden aikana verrokkeja pienempi. Fibromyalgiaa sairastavien kahden kuntoutusmuodon (fibromyalgiakurssi ja epäspesifinen tules-kuntoutus) vertailussa ei kuntoutuksen vaikutuksissa työkykykyyn todettu eroa. Kelan järjestämän kuntoutuksen sisällössä tarvitaan kriittistä arviointia, tutkimusta ja kehitystyötä, jotta yhteiskunnan odotus vaikuttavuudesta toteutuu.

Fibromialgia e dor: um estudo de caso sobre mal-estar no trabalho e adoecimento

A fibromialgia é uma síndrome reumática que atinge cerca de 2% da população brasileira, sendo 90% dos pacientes do gênero feminino. Os principais sintomas são dor crônica generalizada, depressão, desânimo e fadiga acentuada, provocando dificuldades sociais e afetivas cotidianas. Objetivo: O objetivo principal deste estudo foi apreender e interpretar sentidos e significados que mulheres com fibromialgia atribuem às práticas terapêuticas corporais realizadas no Projeto de Extensão: Tratamento Multidisciplinar para Pacientes Portadores de Fibromialgia realizado na Universidade do Estado do Rio de Janeiro (UERJ). Todas as mulheres foram diagnosticadas em ambulatórios públicos e privados e depois se inscreveram voluntariamente no tratamento gratuito disponibilizado. Nossa principal hipótese de estudo procura relacionar o adoecimento dessas mulheres com o regime social de trabalho, que aumenta o sofrimento e, por conseguinte, provoca somatização do mal-estar gerado. Métodos: Trata-se de um estudo socioantropológico com campo etnográfico, no qual foram observadas as práticas corporais semanais nos anos 2009-2010. Também foram realizadas fotografias e entrevistas em profundidade com todas as mulheres que participavam regularmente das práticas corporais. De igual modo, realizamos entrevistas por computador e por telefone com mulheres diagnosticadas por fibromialgia em diversas cidades brasileiras. Resultados: Foi possível compreender que estar em um local onde podem se relacionar com outras pessoas com os mesmos sinais e sintomas e que compartilhar situações de sofrimento semelhantes contribui para construção de uma identidade de grupo baseada no cuidado e no acolhimento. Assim, elas constroem coletivamente valores de cuidado com o corpo e com a saúde. Conclusões: A participação assídua no tratamento oferecido aumenta a qualidade de vida e a vitalidade de mulheres com fibromialgia, contribuindo para a promoção da saúde não apenas na sua dimensão físico-orgânica, mas em sua totalidade sócio-afetiva.

Dor no Corpo ou Dor na Alma? Visões Contemporâneas sobre a Fibromialgia.

Dentro das síndromes de dor crônica, caracterizadas pela manifestação de sintomas somáticos na ausência de uma etiologia médica identificável, a fibromialgia constitui uma das categorias mais misteriosas, devido à presença de numerosos sintomas associados - tais como fadiga, perturbações do sono e alterações da memória e da concentração e pela elevada comorbidade com transtornos de ansiedade e de humor, especialmente com a depressão. Na atualidade, a fibromialgia atinge até 5% da população e afeta profundamente a qualidade de vida dos sujeitos diagnosticados, se instituindo como um importante problema de saúde pública, realidade que demanda o aumento dos estudos relativos à doença. Partindo da revisão bibliográfica das publicações cientificas sobre fibromialgia nos últimos anos (2010-2013), procurou-se alcançar uma melhor visão das abordagens contemporâneas sobre a doença em termos da sua compreensão, classificação e diagnóstico. Os resultados obtidos através desta revisão apontaram a existência de problemas inerentes à concepção da natureza ontológica e epistemológica da dor, cujas manifestações da ordem objetivo e subjetivo dor física/ dor psíquica - embaralham as categorias compreensivas que definem a visão moderna do ser humano nas suas diferentes dimensões existenciais, dificultando a construção de instrumentos de medida e de sistemas classificatórios que permitam uma abordagem mais sofisticada da fibromialgia.

Scientifi c discourses on chronic pain without organic cause Incorporating gender perspective for pain resignifyng-repoliticizing

Chronic pain, without any organic or physical cause (DC), which in psycho-medical terminology is known as fi bromyalgia, (FM), is diagnosed each year to a considerable number of women in capitalistic societies. Our main interest in the following paper is to go in depth in the elaboration of this symptom, its treatment and the psychosocial effects, both in the social order as well as in the lives of the people who suffer from it. Our main goal in the following paper is to look deeper in the elaboration (conceptualization) of this symptom, its treatment and psychological affects, both in the social order as well as in the lives of the people who suffer from it, we are using linked speeches in Spanish magazines publications. The result has been the emergence of three hegemonic discourse positions: One position “scientist”, one “therapeutic of the conformity” position and one “economic and legalistic” position. Each of these has a specifi c feature, but on the whole, is enhanced, producing effects such as the absence of social context to explain the disease; disregard of gender differences in the management and treatment; the instrumentalization of pain to legitimize their practices and the subjection of women to the “psycho-biomedical” paradigm. In that way, a new signifi cance and politicization of the concept of pain is proposed.

Walking Exercise for Chronic Musculoskeletal Pain: Systematic Review and Meta-Analysis

Objective: To systematically review the evidence examining effects of walking interventions on pain and self-reported function in individuals with chronic musculoskeletal pain.
Data Sources: Six electronic databases (Medline, CINAHL, PsychINFO, PEDro, Sport Discus and the Cochrane Central Register of Controlled Trials) were searched from January 1980 up to March 2014.
Study Selection: Randomized and quasi-randomized controlled trials in adults with chronic low back pain, osteoarthritis or fibromyalgia comparing walking interventions to a non-exercise or non-walking exercise control group.
Data Extraction: Data were independently extracted using a standardized form. Methodological quality was assessed using the United States Preventative Services Task Force (USPSTF) system.
Data Synthesis: Twenty-six studies (2384 participants) were included and suitable data from 17 were pooled for meta-analysis with a random effects model used to calculate between group mean differences and 95% confidence intervals. Data were analyzed according to length of follow-up (short-term: ≤8 weeks post randomization; medium-term: >2 months - 12 months; long-term: > 12 months). Interventions were associated with small to moderate improvements in pain at short (mean difference (MD) -5.31, 95% confidence interval (95% CI) -8.06 to -2.56) and medium-term follow-up (MD -7.92, 95% CI -12.37 to -3.48). Improvements in function were observed at short (MD -6.47, 95% CI -12.00 to -0.95), medium (MD -9.31, 95% CI -14.00 to -4.61) and long-term follow-up (MD -5.22, 95% CI 7.21 to -3.23).
Conclusions: Evidence of fair methodological quality suggests that walking is associated with significant improvements in outcome compared to control interventions but longer-term effectiveness is uncertain. Using the USPSTF system, walking can be recommended as an effective form of exercise or activity for individuals with chronic musculoskeletal pain but should be supplemented with strategies aimed at maintaining participation. Further work is also required examining effects on important health related outcomes in this population in robustly designed studies.