A new model for fibromyalgia (FM) provides a rational explanation for the patients’ symptoms and helps communicate between patients and doctors. The model also motivates patients to engage in lifestyle changes that can improve disease outcomes.
Fibromyalgia is characterized by symptoms of pain and also commonly by fatigue, sleep disturbances, dizziness, and gastric problems. One of the challenges for healthcare professionals is communicating the health concerns linked to the disease with patients.
Patients may feel their symptoms are evidence of their body being damaged and require stronger pain medication, but doctors suggest exercise and psychological interventions. These communication problems are frustrating for both physicians and patients.
Evidence-based data has shown that exercise and psychological interventions improve the outcome of fibromyalgia. But when doctors suggest these approaches, patients appear unwilling to adopt them. One reason is that patients simply fail to realize why such interventions would be helpful. This suggests that a new explanatory model is needed to assist the communication between chronic pain patients and their doctors.
The study, “Explaining unexplained pain to fibromyalgia patients: finding a narrative that is acceptable to patients and provides a rationale for evidence based interventions,” published in the British Journal of Pain, describes the development of a new explanation model based on the Complexity theory, which applies mathematics to biology.
The theory forms the basis of artificial intelligence, and according to it, the body is seen as a system in which errors in the network can occur and that need to be reprogrammed.
Researchers wanted to create an explanation model that can be accepted by fibromyalgia patients and motivate them to participate in the recommended interventions. The new model was developed with the help of 15 fibromyalgia patients recruited through a pain management service. Feedback from the patients led to modifications in how the model was presented.
In its final version, the model was presented to patients as: “The body creates ‘stop signals’ that prevent damage and promote recovery. These stop signals include pain, fatigue, nausea, and dizziness. If the person is unable to respond to those stop signals and does not stop what they are doing, then over time the stop signals increase and become fixed. The body is then sensitized to anything that creates a stop signal, such as stressors.”
The final model was evaluated in three “body-reprogramming” courses, where 25 fibromyalgia patients (22 female, three male) and their relatives participated. Only patients willing to experience interventions other than medication were included. The course continued for seven weeks (two hours per week), and patients and relatives were asked to make comments and evaluate certain factors after the sessions.
They included an explanation of the model; relaxation techniques; mood enhancing techniques; exercise; diet and medication.
Two sessions on individualized implementation using patient-specific insights from the model were also conducted.
“I have implemented changes already, such as drug reduction and more exercise. Also, I have learned about relaxation and meditation. Meditation has now become an everyday part of my life,” said a fibromyalgia patient who participated in the study.
”This has been a revelation and has given our family hope where we thought there was none,” a parent said. “This illness has not only affected my daughter but the whole of our family. We have spent years trying self help, but it felt like we were just stabbing in the dark.”
Hope is an important aspect in the experience of chronic pain. For example, when doctors say “I can’t find anything wrong with you,” patients get no explanation for their illness and don’t know if they will ever be able to get better.
This new communication model not only provides an explanation of why the patient is ill, but also why the doctor has not been able to “find anything wrong” – because the problem is often a software malfunction rather than a broken component.
“Fibromyalgia patients appear to respond positively to a technology-derived narrative based on the analogy of the body as a computer,” the team concluded in their report.
Researchers also found that body-reprogramming courses are helpful, motivating patients to engage in lifestyle adaptations to improve recovery, and believe that the model may help improve adherence to treatment.