Explaining unexplained pain to fibromyalgia patients: finding a narrative that is acceptable to patients and provides a rationale for evidence based interventions
One article on PainSci cites Hyland 2016: A Rational Guide to Fibromyalgia
original abstract †Abstracts here may not perfectly match originals, for a variety of technical and practical reasons. Some abstacts are truncated for my purposes here, if they are particularly long-winded and unhelpful. I occasionally add clarifying notes. And I make some minor corrections.
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.
This page is part of the PainScience BIBLIOGRAPHY, which contains plain language summaries of thousands of scientific papers & others sources. It’s like a highly specialized blog. A few highlights:
- Inciting events associated with lumbar disc herniation. Suri 2010 Spine J.
- Prediction of an extruded fragment in lumbar disc patients from clinical presentations. Pople 1994 Spine (Phila Pa 1976).
- Characteristics of patients with low back and leg pain seeking treatment in primary care: baseline results from the ATLAS cohort study. Konstantinou 2015 BMC Musculoskelet Disord.
- Effectiveness and cost-effectiveness of universal school-based mindfulness training compared with normal school provision in reducing risk of mental health problems and promoting well-being in adolescence: the MYRIAD cluster randomised controlled trial. Kuyken 2022 Evid Based Ment Health.
- Is there a relationship between throbbing pain and arterial pulsations? Mirza 2012 J Neurosci.