A middle-aged woman recently sent a panicked email to Mayo Clinic’s Ehlers-Danlos Syndrome (EDS) Clinic. She wrote:
“I’m worried I have hypermobility, and my doctor said I might have Ehlers-Danlos syndrome. What does this mean? Is this going to get worse? Is there anything I can do to make the pain go away? I worry I might have passed this on to my child. Please help!”
As the medical director of the Ehlers-Danlos Syndrome Clinic at Mayo Clinic in Jacksonville, Florida, I know that this woman is one of the lucky ones: She came to the right place, because we regularly diagnose and treat EDS.
Unfortunately, people often have health care providers who don’t know much about Ehlers-Danlos syndrome. In fact, getting an EDS diagnosis can take an average of up to 14 years by some estimates — partially because EDS can show up with so many different symptoms.
EDS was once considered relatively rare, but it’s actually one of the most common (and often overlooked) chronic pain syndromes. We’ve seen a rise in EDS awareness in the medical community and in the public — with celebrities like Lena Dunham, Jameela Jamil and Halsey sharing their EDS diagnoses — but there is still a long way to go in promptly diagnosing and treating people with EDS.
For women with joint pain and hypermobility, it’s worth investigating whether EDS might be the problem.
What is EDS?
EDS is a group of 13 separate disorders that affect the strength and elasticity of connective tissue throughout the body. Connective tissue includes bones, joints, muscles, internal organs, blood vessels and skin. EDS can be passed down from a parent to a child.
The most common subtype of EDS is hypermobile EDS (hEDS), which affects at least 1 in 5,000 people. While men can inherit this condition, women are diagnosed far more often. In some reports, over 90% of patients with hEDS are female. hEDS usually includes widespread joint pain. Many people with hEDS also have headaches and brain fog. Some people with hEDS may experience serious issues such as gastrointestinal disorders, cardiac conditions and surgical complications as well.
Because hEDS can involve essentially every organ system, it is challenging to diagnose and manage. It is characterized by overly flexible joints that move far past the typical range (joint hypermobility) — like elbows or knees that can bend slightly in the opposite direction, or thumbs that can bend to touch the forearm. Other signs of hEDS include overly stretchy skin (skin hyperextensibility), easy bruising and fragile tissues that don’t heal well and may scar easily.
Similar to hEDS — but thought to have a different genetic cause — is hypermobility spectrum disorder (HSD). Because the two conditions are treated and managed identically, they are typically referred together as hEDS-HSD.
Genetic testing is useful for many types of EDS, but no identifiable gene has been associated with hEDS or HSD. So people with suspected hEDS-HSD are diagnosed through clinical exam.
How is EDS treated?
It’s true that hEDS-HSD can be debilitating, and it can progress if you don’t take the necessary steps to avoid injury and maintain function. But there is treatment that works!
We recommend low-impact exercise such as swimming, bicycling, using an elliptical machine and walking. Other treatments that may be helpful include tai chi, meditation, heat therapy (like heating pads, warm baths), massage, acupuncture, transcutaneous electrical nerve stimulation (TENS), therapeutic kinesiology tape, dry needling and trigger point therapy.
Topical medications are preferred over oral medications to avoid extra side effects. Optimizing mental health also is a crucial part of treatment for any cause of chronic pain. This can come in the form of cognitive behavioral therapy, pain neuroscience (recognizing how pain works in the body), or health and wellness coaching.
But among all these possible treatments, the real cornerstone of EDS treatment is physical therapy and occupational therapy. The key is that these treatments are done with therapists who are experienced with EDS and hypermobility. Some types of physical therapy can be damaging to those with EDS if not done correctly.
Patients of childbearing age should also understand there are increased risks with pregnancy and childbirth. The risks are rare but include bleeding, earlier onset of labor and rapid progression through labor. It is important to make your health care provider aware of your diagnosis and to have pelvic floor therapy during pregnancy. In doing so, you are more likely to have a typical term delivery without complications.
What’s next for EDS?
Research on EDS is underway at Mayo Clinic and institutions worldwide. The Ehlers Danlos Society has additional information and provides an avenue to connect with others. The Mayo Clinic EDS Clinic recently launched a website regularly updated with research and information on all topics related to hEDS-HSD.
There is still much to learn about hEDS-HSD. And while we may not have all the answers yet, we know every patient deserves to live a meaningful, high-quality life, especially those with conditions that have been overlooked for years.
Relevant reading
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