As the cause of fibromyalgia is controversial, communicating with patients can be challenging, particularly if the patient adopts the narrative 'I am damaged and so I need a more powerful pain killer'. Research shows that providing patients with alternative narratives can be helpful, but it remains unclear what particular narratives are most acceptable to patients and at the same time provide a rationale for evidence based psychological and exercise interventions. This article described the development of a new narrative and the written comments made about the narrative by fibromyalgia patients. The narrative derives from a complexity theory model and provides an alternative to biogenic and psychogenic models. The model was presented to 15 patients whose comments about comprehensibility led to the final format of the narrative. In the final form, the body is presented as 'a very, very clever computer' where fibromyalgia is caused by a software rather than a hardware problem. The software problem is caused by the body adapting when people have to 'keep going' despite 'stop signals', such as pain and fatigue. The narrative provides a rationale for engaging in psychological and exercise interventions as a way of correcting the body's software. This way of explaining fibromyalgia was evaluated by a further 25 patients attending a 7-week 'body reprogramming' intervention, where the therapy was presented as correcting the body's software, and included both exercise and psychological components. Attendance at the course was 85%. Thematic analysis of written patient feedback collected after each session showed that patients found the model believable and informative, it provided hope and was empowering. Patients also indicated that they had started to implement lifestyle change with perceived benefit. Fibromyalgia patients appear to respond positively to a technology-derived narrative based on the analogy of the body as a computer.
Objectives
To describe the extent to which irritable bowel syndrome (IBS), fibromyalgia syndrome (FMS), and chronic fatigue syndrome (CFS) exhibit symptom overlap, and to validate a patient-derived, generic symptom questionnaire.
Methods
A patient-derived 61-item symptom-frequency questionnaire was completed by participants recruited through IBS, FMS and CFS self-help websites. Principal axis factor analysis with oblimin rotation was performed separately for those reporting an IBS, FMS or CFS diagnosis.
Results
Questionnaires were completed by 1751 participants of whom 851 reported more than one of the three diagnoses. Stomach pain on at least a weekly basis was reported by 79% of IBS, 52% of FMS, and 43% of CFS single diagnosis participants. Pain increasing the day after activity was reported by 32% of IBS, 94% of FMS, and 85% of CFS single diagnosis participants. Waking still tired at least once weekly was reported by 75% of IBS, 97% of FMS, and 95% of CFS single diagnosis participants. Exploratory factor analysis produced consistent results across all three diagnostic groups, the 61 items loading on 12 correlated factors with a single higher order factor on which all items loaded. Frequency analysis led to the rejection of one item (cold sores on or near lips), and freeform reporting by participants of additional symptoms identified an additional five, namely, restless legs, hair loss/brittle hair/thinning, dizziness/balance problems, blurred vision and urination problems.
Conclusions
IBS, FMS and CFS are polysymptomatic spectrum disorders with a wide range of overlapping symptoms, many of which are unrelated to diagnostic criteria. Frequency analysis and factor analysis confirm the validity of using the same questionnaire across different diagnostic categories. The 65-item general symptom questionnaire (GSQ-65) is a valid generic symptom scale suitable for assessing the many different symptoms of people with IBS, FMS and CFS.
Managing patients and their expectations in gynecological outpatient departments when symptoms are inconsistent with observable pathological findings is challenging. This is further complicated when patients have a concomitant central sensitivity syndrome, which can also influence the surgical outcome. Identifying these patients is a key factor for appropriate management.
We propose a theory known as the Hyland model to help conceptualise Fibromyalgia within a complex adaptive control system. A fundamental assumption is that symptom generating mechanisms are causally connected, forming a network that has emergent properties. An illness narrative has been developed which has a ‘goodness of fit’ with the lived experience of those with Fibromyalgia. The theory guides management within the clinical setting and incorporates current evidence-based therapeutic strategies, within a multi-modal intervention described as ‘Body Reprogramming’. This intervention focuses on non-pharmacological and lifestyle-based considerations. The theoretical framework also helps explain why modest therapeutic effects are gained from current pharmacological options.
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