TOPLINE:

More than 90% of patients with hypermobile Ehlers-Danlos syndrome (EDS) reported being misdiagnosed with psychiatric illnesses by nonpsychiatrist physicians, with a vast majority being told they were fabricating symptoms.

METHODOLOGY:

• Researchers determined the proportion of patients with hypermobile EDS treated at a specialty center who had previously been misdiagnosed by physicians who were not board-certified psychiatrists.
• They retrospectively reviewed medical records of 429 patients (mean age, 27.9 years; 94.8% women) diagnosed with hypermobile EDS between January 2010 and December 2018.
• Patients reported whether physicians had ever told them their symptoms were “in their head” or they were “making it up” or being attention-seeking or had diagnosed them with conversion disorder, Munchausen syndrome by proxy, or a factitious disorder.
• Patients who answered “yes” to any of the questions were asked if a board-certified psychiatrist made the diagnosis.
• A case was considered misdiagnosed if a nonpsychiatrist physician had attributed pain to a primary psychiatric disorder before hypermobile EDS was diagnosed.

TAKEAWAY:

• A total of 405 patients (94.4%) with hypermobile EDS reported being misdiagnosed, whereas only 24 (5.6%) reported no psychiatric misdiagnosis.
• Overall, 88% of patients were told they were making up their symptoms, 76% were labeled as attention-seeking, 67% were misdiagnosed with conversion disorder, 60% were told the symptoms were “in their head,” and 4% were diagnosed with Munchausen syndrome by proxy or a factitious disorder.
• Researchers found no link between age of the patients and the distribution of misdiagnosis categories.

IN PRACTICE:

“The accurate diagnosis of chronic pain disorders benefits from a multidisciplinary approach, involving pain specialists, rheumatologists, neurologists, and qualified mental health professionals,” the authors of the study wrote.

“Addressing underlying causes and improving strategies to recognize EDS more accurately can substantially improve outcomes for patients who are affected by these complex disorders,” they added.

SOURCE:

This study was led by Chanbin Lee, Brown University in Providence, and Pradeep Chopra, MD, Center for Complex Conditions in Pawtucket, both in Rhode Island. It was published online on May 29, 2025, in Children.

LIMITATIONS:

Patients may not have accurately recalled earlier misdiagnoses as hypermobile EDS because they are often diagnosed years after the onset of symptoms. Researchers did not have information on prior psychiatric evaluations of the patients. All patients were recruited from only one specialty center that typically drew complex cases.

DISCLOSURES:

This study did not receive any external funding. The authors declared having no conflicts of interest.

This article was created using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.