Pain in more body areas impacts daily activities in hEDS: Study
Patients found to have pain earlier, longer than those with other conditions
People with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) experience an earlier onset of pain, which typically affects more body areas and with a longer duration, than individuals with pain due to other conditions.
Those are the findings of a new study by researchers in Sweden, who also demonstrated — “surprisingly,” the team wrote — that pain intensity was lower for the HSD/hEDS patients.
Widespread body pain was found, however, to affect the day-to-day life of individuals living with it.
“These pain characteristics affected daily activities, indicating a substantial impact on daily life for those with HSD/hEDS,” the researchers wrote.
According to the team, the “complex pain presentation” of people with hEDS and HSD is marked by “multiple pain types occurring simultaneously and changing over time.” This “highlights the need to distinguish HSD/hEDS pain from other chronic pain conditions for optimal treatment,” the researchers wrote.
Their study, “The Impact of Pain on Everyday Activities of People With Hypermobility Spectrum Disorders or Hypermobility Ehlers Danlos Syndrome,” was published in the European Journal of Pain.
Researchers use registry of over 40,000 adults to investigate pain
Hypermobility, defined as moving the joints past the normal range of motion, is a hallmark symptom of hEDS, the most common type of Ehlers-Danlos syndrome. It’s also a common symptom of HSD. However, while HSD is characterized by similar symptoms to those of hEDS, it does not meet the diagnostic criteria of this type of EDS.
Joint hypermobility in both hEDS and HSD may cause joint instability and pain.
“Clinical experience [demonstrates] the need for studies that can differentiate HSD/hEDS from other pain conditions,” the researchers wrote. “This differentiation is crucial as care and rehabilitation must be tailored to the specific impacts of hypermobility on daily life.”
To further differentiate pain types, and determine how pain affects these patients’ everyday lives, the research team analyzed data obtained from the Swedish quality registry for pain rehabilitation.
Among a total of 43,801 adults involved in the registry, 1,211 (2.8%) were diagnosed with hEDS or HSD. These patients were significantly younger, with a mean age of 36.3 versus 45.7, than those with pain due to other conditions, who served as the reference group. The hEDS/HSD group also had a higher proportion of women (88.9% vs. 74.3%).
More people with hEDS or HSD were working, or engaged in work training or studying (65.2% vs. 57.8%), the data showed. Also a lower proportion of people in this target group received compensation from the country’s social insurance agency (40.4% vs. 45.1%). Individuals with hEDS/HSD also reported fewer physician visits in the year prior due to pain than the reference group.
Relative to the controls, a higher proportion of patients with hEDS or HSD reported persistent pain (80.1% vs. 74.2%), and also had pain onset that occurred an average of four years earlier (13.5 vs. 9.5 years). These individuals also had been living with persistent pain for longer (10.4 vs. 7.6 years).
However, the hEDS/HSD patients reported significantly lower pain intensity in the prior week (6.4 vs. 6.8 on a numeric pain rating scale) than those with pain due to other conditions.
Most intense body pain reported in lower back, then shoulders and hips
Both groups had similar pain patterns, reporting their most intense pain in the lower back, followed by pain in the shoulder and in the hips. Overall, those with hEDS or HSD had more pain locations than the reference group (20 vs. 14.8).
Pain interference in daily activities was measured using a tool that overall evaluates psycho-social and behavioral consequences of chronic pain. Although the results were similar when comparing hEDS/HSD, these patients generally appeared to have lower scores for pain interfering with daily activities. Statistically significant differences were found in five domains. These were participating in activities, activity restriction, enjoyment with family or friends, changes in relationships, and impact on job satisfaction.
The highest interference was reported in the patient’s ability to work following pain onset (mean score 5.3 in the hEDS/HSD group). The lowest was associated with changed relationships (3.4).
Further research is essential to better understand how pain affects valued activities and the daily lives of people with HSD/hEDS and to develop targeted interventions for improving their quality of life.
Further analysis indicated that the number of pain locations was significantly associated with pain intensity in the previous week in hEDS/HSD patients. In contrast, whether pain was persistent or intermittent was not crucial. In the reference group, both the number of pain locations and having persistent or intermittent pain were associated with pain intensity.
In both hEDS/HSD and reference groups, pain intensity during the last week and the number of pain locations significantly explained pain interference with everyday activities. This was in contrast with the time since pain onset, which was not such a predictor.
“Further research is essential to better understand how pain affects valued activities and the daily lives of people with HSD/hEDS and to develop targeted interventions for improving their quality of life,” the researchers wrote.
Overall, however, “the results of our study can contribute to increased understanding and knowledge of the characteristics of pain and how activity limitations are expressed in people with HSD/hEDS,” the team wrote.
About the Author
