For most of her life, Jacqueline Luciano, a nurse living in Chicago, United States, has experienced mysterious injuries and ailments, including a long list of sprains and tears; dizziness and fatigue; chronic headaches; and chronic pain. Pregnancy was especially brutal on her body: Her joints felt so lax that she kept dislocating her hips.
“A lot of this was underdiagnosed and undertreated,” Luciano says. “I kept getting injured at work.” Even at an office job, the strain of sitting upright all day triggered disabling headaches. In late 2021, she contracted long COVID and her condition deteriorated to the point where she was forced to leave work.
As Luciano would discover, most of her health problems, including her long COVID, could be due to the fact that she is hypermobile or has joint hypermobility. Luciano joins an increasingly visible group of people, including singer-songwriter Billie Eilish and the author of bestsellers of the New York Times Rebecca Yarros, who are speaking out about their struggles with hypermobility.
Hypermobility can be very different from person to person, whether it’s being able to contort your limbs into unusual positions or having joints that pop out of place. This ability to extend a joint beyond its normal range of motion can be a harmless party trick for some, and even an advantage for dancers and gymnasts.
But for many others, hypermobility is a sign that their connective tissue is weak, making them vulnerable to a wide range of problems, including chronic pain and gastrointestinal disorders. Research also shows that hypermobility increases the risk of developing a number of chronic conditions, including long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), English) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
“Connective tissue is everywhere in our body,” which explains why it can cause these systemic symptoms, says Linda Bluestein, an integrative pain medicine doctor and podcast host. Bendy Bodies with the Hypermobility MD.
Although researchers are still working to understand the connection between these conditions, they are beginning to piece together the unexpected risks of joint hypermobility and why viral infections may pose a particular danger.
People with joint hypermobility can be classified into a couple of different categories: those who have Ehlers-Danlos syndrome (EDS) and those who do not.
“All people with Ehlers-Danlos syndrome are hypermobile, but not all hypermobile people have Ehlers-Danlos syndrome,” says Jessica Eccles, a professor at Brighton and Sussex Medical School in the United Kingdom, whose research focuses on joint hypermobility.
Although EDS, which is a genetic condition, is thought to be relatively rare, having hypermobile joints is much more common, with an estimated 3 to 4 percent of the general population having overall joint hypermobility. Even more people are thought to have partial hyperlaxity, either hypermobility of the arms and legs; or specific joints.
All people with EDS experience symptoms ranging from chronic pain and fatigue to digestive disorders. However, for people who do not meet the criteria for EDS, their hypermobility may be asymptomatic, meaning completely harmless, or it may also be associated with a number of other problems.
“The problem is not hypermobility, but the quality of the connective tissue,” says Alissa Zingman, a physician and founder of PRISM Spine and Joint, which specializes in treating patients with connective tissue disorders. Zingman notes that hypermobility is often the first clue that something is different about a person’s connective tissue.
Hypermobility can manifest itself in patients in various ways. For some, it may cause their muscles to lock up more than usual, as a countermeasure to help compensate for the instability of their joints and prevent injury. “That tightness of the muscles helps provide support,” says Clayton Powers, a physical therapist at the University of Utah (USA), who specializes in treating patients with hypermobility and related disorders.
These countermeasures are often unconscious and, over time, can take their toll. “Physically, they have to compensate more,” says Jonathan Parr, a physical therapist and founder of Parr PT, who also specializes in the treatment of hypermobility and associated conditions. Some of the adverse effects they experience include tightness in the neck, spine, and chest, as well as chronic headaches and pain.
For all of these problems, the cause can be traced back to the connective tissues of the associated organs. For example, the gastrointestinal tract is a long tube made up of very thin connective tissue. Any weakness in that tissue can affect how effectively it breaks down food and absorbs nutrients into the body. Likewise, if the connective tissue that holds blood vessels together is a little stretchier than normal, then the blood vessels cannot pump enough blood to the brain, causing brain fog.
“It’s a little different for everyone,” says Bala Munipalli, an internal medicine doctor at Mayo Clinic who treats long COVID patients.
Patients with hypermobility also often suffer from chronic inflammation, along with other signs of immune system dysfunction, such as overactivation of mast cells, which are responsible for protecting the body against pathogens. As a result, hypermobility is often associated with immune system dysfunction, such as allergies, autoimmune disorders, or food intolerances. “Once a part of the immune system is dysregulated, there can be a cascade-type effect of immune dysfunction,” says Zingman.
Patients with long COVID and related disorders, such as POTS or ME/CFS, often report many seemingly unrelated symptoms, from constipation to a racing heart, brain fog and muscle aches.
However, the underlying cause of these various symptoms may not be as mysterious as it seems. “There’s a saying that ‘if the symptoms don’t connect, think about the connective tissue,'” Powers says.
Although we still don’t know exactly how viral infections damage connective tissue, there are several theories. For one thing, viral infections can trigger inflammation in connective tissues, which “can lead to further connective tissue damage,” Munipalli says. Evidence suggests that this may even trigger hypermobility in patients who did not previously have it, as well as worsen pre-existing hypermobility.
Another potential source of harm is the fact that several viruses, including herpes viruses, Epstein-Barr virus, and coronaviruses, such as SARS-CoV-2, the virus that causes COVID-19 infections, can harm collagen, which forms connective tissue, or causing the body to produce less collagen.
“The viruses themselves will produce collagenase, which is the enzyme that breaks down collagen,” says Jaime Seltzer, scientific director of the nonprofit organization ME Action. “If someone already has some collagen deficiency, there is a possibility that that person is more susceptible to a chronic disease associated with an infection,” he adds.
For Luciano, it took more than a year dealing with long COVID symptoms before she was able to find a doctor who was familiar with the signs of joint hypermobility and an even longer time to find a doctor who could formally diagnose her with hypermobile EDS. Meanwhile, her symptoms have continued to worsen, to the point that she now has difficulty standing upright.
Looking back, Luciano wishes she had been diagnosed sooner so she could have taken steps to avoid getting worse. She also wishes that her mother, who became disabled 30 years before her and who may also have had undiagnosed EDS, could have received the care she needed. “30 years later… the same thing is still happening,” says Luciano.