Imagine feeling a disabling symptom such as pain, fatigue, weakness or abnormal movements, with no relief in sight, and after various medical tests, nothing can be found. The reports show there’s nothing “physically” wrong, but the symptom continues.
It’s estimated that medically unexplained symptoms, or functional disorders, account for about one third of sub-specialty medical consultations which include conditions such as functional neurological disorders, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome and many more. Often, patients face dismissive attitudes from physicians and this can perpetuate disability and lead patients astray in the healthcare system.
Dr. Matthew Burke, a cognitive neurologist at Sunnybrook and assistant professor at the University of Toronto, says it’s important for patients and physicians to know that “these symptoms are not being made up and may be due to real, biologically-based dysfunction of brain networks.”
He is a strong advocate for this field and recently completed a fellowship at Harvard Medical School focused on investigating the complex border-zones between neurology and psychiatry. Dr. Burke believes that functional disorders epitomize this interface and unfortunately have slipped through the cracks in medicine. He has written about this in his article, “It’s All in Your Head” – Medicine’s Silent Epidemic published in JAMA Neurology and shares more insights into the complexity of the brain and body connection.
Why is this topic so important?
I witness first-hand the high volumes of patients with medically unexplained symptoms, or functional disorders, that are falling through the cracks of our healthcare system. Most physicians are well aware of this growing issue but few want to talk about it.
Inadequate management of this segment of medicine often leaves patients with frustration, feelings that the physician may think they are “faking it” and little guidance moving forward. This often leads to multiple second opinions and unnecessary investigations that can harm patients and strain healthcare resources.
Improving medical education about functional disorders and developing new strategies to collect data on the prevalence and costs associated with these disorders will be critical in addressing this “silent epidemic.”
Has this trend been looked at more in recent years?
This segment of medicine seems to be getting bigger and bigger over recent years. It is unclear if this is due to a true increase in incidence, or if we are just becoming more aware of how these patients present. The rising use of the internet and social media platforms may provide a new way for patients with similar medically unexplained symptoms to connect. These kinds of support networks may be helpful, but it can also result in the dissemination of inaccurate or misguided diagnoses and advice.
How can physicians help patients who are in this position?
It helps to explain the diagnosis to patients in a transparent, supportive and validating context. Educate them on the nature of their symptoms, and that they may be manifesting due to a disruption of brain function. While psychological factors may be present and are relevant, we don’t fully understand how and why such disruptions occur.
It helps to use explanatory analogies, such as a computer to describe the disorder as a “software” problem rather than a “hardware” problem, and make it clear that having a “software” problem is just as “real” as the latter.
Providing reassurance, emphasizing that symptoms are potentially fully reversible and optimizing management of possible comorbid symptoms, such as pain/headache, anxiety or depression, insomnia etc, are ways that patients can be helped.
Ideally, it could help to connect patients with multi-disciplinary providers (psychotherapy, physical therapy and other allied health professionals) to engage in ongoing management. Unfortunately, this last step can be the most difficult due to lack of infrastructure and limited accessibility of services and resources.
What other advice do you have for patients with medically unexplained symptoms or functional disorder?
In the coming years, colleagues and I will be initiating research studies aimed at better understanding the complex brain networks implicated in these disorders. We hope to also begin pilot trials using new therapeutic technologies to try to target and modulate these dysfunctional networks.
Working with your healthcare team and connecting with local specialists can be helpful. A treatment team may involve physicians, specialists, psychologists and physiotherapists and other medical professionals.
There are self-education resources available online to help patients understand their symptoms in patient-friendly language. The best example is a website called neurosymptoms.org that was created by Dr. Jon Stone, a UK neurologist and pioneer of this field. However, be aware there may be some online resources or fringe “specialists” that are not credible and may be trying to take advantage of vulnerable patients who are in the search for answers or relief for symptoms.
The brain is complicated and these disorders appear to be linked to some of the most poorly understood parts of it. For example, areas of the brain involved in processing and integrating emotional, cognitive, sensory and motor information. It is important for patients to be open-minded about these neuropsychiatric disorders despite the fact that we don’t yet have all the answers around why they occur.Learn more: When there is no medical explanation for symptoms or pain