By Lana Barhum
Earlier this year, the British Pain Society released an interesting study on the development of a new method to help doctors better communicate with fibromyalgia patients about their pain and symptoms.
That narrative, which takes the unusual approach of comparing fibromyalgia to a software problem in a computer, is geared towards motivating patients to focus on exercise and other lifestyle changes, as opposed to pain medication.
"This study provides evidence that a framework incorporating a computer based analogy provides an acceptable story that helps FM (fibromyalgia) patients understand their illness and motivates them to engage in evidence based lifestyle adaptations that enhance recovery," wrote lead author Michael Hyland, PhD, a professor of Health Psychology at Plymouth University in the UK.
Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, fatigue, depression, mood swings and insomnia. The exact cause of fibromyalgia is unknown.
Because the diagnosis of fibromyalgia is difficult and sometimes controversial, many patients struggle to communicate with doctors about their symptoms, pain and treatment. Studies have shown exercise and psychological intervention can improve fibromyalgia symptoms, but many patients feel their pain is best treated with medication. They are often surprised when their doctors suggest non-medicinal treatment options.
The fibromyalgia narrative developed at Plymouth University is designed to minimize that misunderstanding and assist in communication between patients and their doctors. It encourages doctors to present the body as “as ‘a very, very clever computer’ where fibromyalgia is caused by a software rather than a hardware problem.”
If there are issues in the software, the computer (the body) can be reprogrammed to correct them. Essentially, patients are offered an explanation for why they are ill, why the doctor cannot find anything wrong, and what can be done to intervene.
The narrative was developed with the help of 15 fibromyalgia patients. The patients said the initial model created by researchers “worked poorly” and was ambiguous, so the researchers modified the narrative to make it more understandable.
"Under certain identifiable conditions, the body creates ‘stop signals’ that prevent damage and promote recovery. These stop signals include pain, fatigue, nausea and dizziness. If, for whatever reason, the person is unable to respond to those stop signals – that is, they do not stop what they are doing – then over time the stop signals increase and become fixed, and the body is sensitized to anything that creates a stop signal,” wrote Hyland.
The narrative also provided a basis for exercise and psychological help as ways to correct the body's software.
A second group of 25 fibromyalgia patients evaluated the new model during a 7 week “body reprogramming intervention,” in which they were taught about relaxation techniques, mood enhancement, exercise, diet and lifestyle changes. Only patients willing not to take medication were included.
Most patients said the intervention was very useful, calling it believable, informative and hopeful. Many also said they had implemented lifestyle changes once they knew the benefits.
“Very informative and so refreshing to find answers to problems I’ve had for over 14 years and wonderful to be able to self believe ‘It’s not in my head’ as I’ve self-doubted so many times,” wrote one patient.
“This has been a revelation and has given our family ‘hope’ where we thought there was none,” wrote the mother of another patient. “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.”
Hyland says hope is an important facet in finding solutions to chronic pain.
"When patients have no explanation of their illness, they do not have a conceptual model of how and whether they will ever get better. Thus, providing patients with an illness narrative provides information not only about the route into the illness but also the route out,” he wrote.
Lana Barhum lives and works in northeast Ohio. She is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.
To learn more about Lana, visit her website.