Nearly half of EDS patients report moderate to severe pain at diagnosis
Study: Older age, hEDS, and headaches linked to greater pain severity
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Nearly half of people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) experience moderate to severe pain at the time of diagnosis, a study in Italy shows.
The study identified older age, hypermobile EDS (hEDS), and headaches as factors linked to greater pain severity.
“An early pain management strategy that includes a multidisciplinary treatment based on a pharmacological approach with opioid analgesics, targeted physiotherapy, and specific treatment for headaches should be promptly implemented, especially in patients with hEDS who are at a greater risk of developing moderate/severe pain,” the scientists wrote
The study, “Characteristics of Pain in Patients Diagnosed With Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders. An Observational Study,” was published in Pain Research and Management.
Link between pain and personal characteristics rarely assessed
EDS, of which hEDS is the most common type, is a group of conditions that affect the connective tissue, which provides structure to other tissues and organs. It is marked by fragile skin, overly mobile joints, and bone problems. People with overly mobile joints who do not meet all diagnostic criteria for hEDS are classified as having HSD.
Pain is common in people with EDS and HSD, often becoming chronic and worsening over time. In fact, previous research has reported that most people with hEDS experience moderate to severe pain. However, the links between pain and personal characteristics, such as age, sex, and joint dislocations, have been rarely assessed.
To learn more, researchers analyzed data from 96 people diagnosed with EDS or HSD (median age 24 years, 70.8% female) evaluated at a specialized center in Italy between 2017 and 2022. Diagnosis was based on established clinical criteria, and genetic testing was used in 51 participants to confirm diagnosis when available.
Among the study participants, the most common diagnosis was HSD (44.8%), followed by hEDS (32.3%), classical EDS (17.7%), and vascular EDS (5.2%).
About half of the patients (49%) reported moderate to severe pain at diagnosis, which in 83.1% of cases affected multiple body parts. The lower limbs were more commonly affected, and about one-third of participants reported pain in joints that had experienced one or more dislocations.
Having hEDS increased risk of moderate to severe pain by 6.2 times
Statistical analyses showed that those with moderate to severe pain were more likely to be older, have hEDS, and experience headaches.
According to the researchers, “the role of age is closely linked both to the course of the disease and its probable chronicity, as well as the diagnostic delay that often occurs, thus leading to inadequate patient management.”
Each additional year of age increased by 6% the risk of moderate to severe pain, while having hEDS increased this risk by 6.2 times. Headaches were associated with a nearly fourfold higher chance of moderate to severe pain. People with dislocations affecting multiple joints also tended to report more severe pain, but the effect was not statistically significant.
The researchers also found that participants who were taking pain medications such as paracetamol or nonsteroidal anti-inflammatory drugs (NSAIDs) were more likely to report more severe pain.
“This finding likely reflects that patients with greater pain burden are more likely to require pharmacological treatment,” the investigators wrote. “However, the persistence of moderate/severe pain despite ongoing therapy may also suggest suboptimal pain control in a subset of patients.”
In contrast, neither targeted physiotherapy nor daily physical activity was associated with pain severity.
These findings suggest that pain should be addressed early, particularly in people with hEDS, headaches, or increasing age. The researchers concluded that early pain management should combine medications, targeted physiotherapy, and headache treatment.
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