Explaining unexplained pain to fibromyalgia patients: finding a narrative that is acceptable to patients and provides a rationale for evidence based interventions

Abstract

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.

Adherence to fibromyalgia treatment: challenges and impact on the quality of life

“…In an attempt to reduce such frustration, Hyland et al 24 studied an original narrative to explain to the patient the FM's dysfunctional pain. Hyland et al 24 studied the physician-patient relationship in the chronic pain research context of Kenny 25 , which stated that potentially curative interactions between physicians and their patients, which are not based on the biogenic model of the visible body or the psychogenic model of invisible pain, are needed to aid communication between patients with chronic pain and their physicians. The narrative proposes that the patient's body is comparable to a computer, with FM being a predominant problem of programming (or "software") rather than structure (or "hardware").…”

“…Nearly a third of FM patients simply wanted to know if they actually believed that the disease with which they were diagnosed really existed. These desires took precedence over the development of more effective drugs, more funding for research and better diagnosis 18,24,43 . Patients are more satisfied when their physicians adopt a therapeutic set, not limited to the prescribed drugs, and use a greater variety of methods to deal with FM symptoms, showing more concern with them.…”

“…The use of positive coping strategies can be therapeutic and reduce the severity of symptoms. Exercises and stress management techniques such as relaxation exercises, meditation, prayer, hobby, and conversation with friends, family, or healthcare professionals are forms of therapy for FM 18,24,44 . The detection of the possibility of the domino effect or even a "vicious circle" that QoL problems can produce, and their clear communication, have a positive impact.…”

Reductionist thinking and animal models in neuropsychiatric research

“…This possibility, for which there is preliminary support (Melidis et al 2018), suggests that the specific pathophysiology is of a kind that will not be discovered using biology, and that it would be better to understand functional disordersand mental illnessas a form of program error in a complex system. Although patients with mental health problems accept psychological interpretations of their illnesses, patients with functional disorders seldom do so (Stone et al 2002), but they do find acceptable a narrative based on a program error (Hyland et al 2016). Artificial intelligence may prove a better heuristic for the treatment of these troubling conditions than either biology or psychology.…”

A Possible Explanation for Non-responders, Responders and Super-responders to Biologics in Severe Asthma

“…As the pathogenic state of the network is affected by lifestyle, with health promoting lifestyle leading to less network pathology, 13,25 then multicomponent lifestyle change interventions (exercise, psychology nutrition) provided with a narrative that engages patients and produces adherence (such as body reprogramming) could improve the effectiveness of biologics. 26 The final prediction is:…”