Ehlers-Danlos Society Releases Statement on Opioid Use

Yedida Y Bogachkov PhD avatar

by Yedida Y Bogachkov PhD |

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The Ehlers-Danlos Society, in collaboration with the EDS and HSD International Consortium Pain Working Group, recently released a statement regarding opioid use by people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

EDS is a group of genetic disorders that specifically affect the connective tissue that maintains the structure of the joints, skin, blood vessels, and many other tissues and organs.

Pain is common to many with EDS and HSD, and can be caused by multiple factors. As such, several treatment options need to be considered by patients and their care team in managing pain, including a range of medications, physical therapy, acupuncture, intervention procedures, and mental health support.

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Opioids may be prescribed for pain management, the society noted, but their risks and benefit should be carefully considered and discussed.

Opioids have long been used to manage both the acute and chronic pain of various conditions. However, many in the medical community have come out against opioid use in recent years due to addiction concerns.

International pain management guidelines recommend against the use of opioids for chronic pain management. And clinicians, becoming increasingly concerned with different government and institutional sanctions, have taken to restricting opioid prescriptions.

“Different countries have varying policies and guidelines on the use of opioid medications in chronic pain, which will influence whether and how they are prescribed,” the Ehlers-Danlos Society noted in its statement.

Many within the EDS and HSD communities, it added, have reported that opioids are helpful, and perhaps even essential for managing their chronic pain. However, it urged more research is needed to fully evaluate the effectiveness and safety of opioids in patients to clearly ascertain their risks and benefits.

The society also favors a healthcare team considering individual circumstances when a patient’s pain is being managed well with opioids.

“Clinicians contemplating withdrawal of an opioid medication from a person with EDS or HSD, despite evidence of effectiveness and an absence of adverse effects, should have an alternative pain management plan that is reasonably likely to provide equivalent relief,” it stated.

Open communication and shared agreement between patients and their doctors regarding pain management is of the utmost importance.

“Shared decision making between the doctor and patient is an essential component of the therapeutic alliance for both initiation and withdrawal of pain medications,” the society added.