What health problems may occur in people with joint hypermobility?

For most of her life, Jacqueline Luciano, a nurse living in Chicago, USA, suffered mysterious injuries and ailments, including a long list of sprains and tears; dizziness and fatigue; chronic headaches; and chronic pain. Pregnancy was particularly hard on her body: her joints were so weak that she kept dislocating her hips.

“A lot of this was undiagnosed and untreated,” Luciano says. “I was constantly getting injured at work.” Even at an office job, the strain of sitting upright all day would cause headaches. In late 2021, she contracted long COVID and her condition worsened to the point where she was forced to leave work.

As Luciano discovered, most of her health problems, including her long COVID, can be attributed to the fact that she is hypermobile or has joint hypermobility. Luciano joins an increasingly prominent group of people, including singer-songwriter Billie Eilish and author bestsellers of the New York Times’ Rebecca Yarros, who talk about their struggles with hypermobility.

Hypermobility can vary greatly from person to person, whether it’s the ability to contort limbs into unusual positions or 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, leaving 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 present throughout our bodies,” which explains why it can cause these systemic symptoms, says Linda Bluestein, an integrative pain medicine physician and podcast host. Bendy Body with Hypermobility MD.

While 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 be especially dangerous.

People with joint hypermobility can be divided into several 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 disorder, is considered relatively rare, joint hypermobility is much more common, with an estimated 3 to 4 percent of the general population having general joint hypermobility. Many more people are thought to have partial hyperweakness or hypermobility of the arms and legs; or specific joints.

All people with EDS experience a wide range of symptoms, from chronic pain and fatigue to digestive disorders. However, in people who do not meet the criteria for EDS, hypermobility may be asymptomatic, meaning completely harmless, or it may be associated with a number of other problems.

“The problem is not hypermobility, but the quality of the connective tissue,” says Alyssa 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 sign that something is wrong with a person’s connective tissue.

Hypermobility can manifest itself in different ways among patients. For some, this can lead to more muscle locking than normal as a countermeasure to help compensate for joint instability and prevent injury. “Tight muscles help provide support,” says Clayton Powers, a physical therapist at the University of Utah who specializes in treating patients with hypermobility and related disorders.

These countermeasures are often unconscious and can take their toll over time. “Physically, they have to compensate more,” says Jonathan Parr, a physical therapist and founder of Parr PT, who also specializes in treating hypermobility and related conditions. Some of the side effects they experience include tightness in the neck, spine and chest, as well as chronic headaches and pain.

The cause of all these problems lies in the connective tissues of the relevant organs. For example, the gastrointestinal tract is a long tube made of very thin connective tissue. Any weakness in this tissue can affect how efficiently it breaks down food and absorbs nutrients into the body. Likewise, if the connective tissue holding the blood vessels together is a little more elastic than normal, the blood vessels cannot pump enough blood to the brain, resulting in brain fog.

“It’s a little different for everyone,” says Bala Munipalli, an internal medicine physician at the 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 from pathogens. As a result, hypermobility is often associated with immune system dysfunction, such as allergies, autoimmune diseases or food intolerances. “Once part of the immune system is disrupted, a cascading effect of immune dysfunction can occur,” says Zingman.

Patients with long COVID and related disorders such as POTS or ME/CFS often report many seemingly unrelated symptoms, from constipation to heart palpitations, brain fog and muscle pain.

However, the underlying cause of these various symptoms may not be as mysterious as it seems. “There’s a saying: ‘If the symptoms don’t match, think about the connective tissue,'” Powers says.

Although we still don’t know exactly how viral infections damage connective tissue, there are several theories. First, viral infections can cause connective tissue inflammation, which “can lead to further damage to the connective tissue,” Munipalli says. Evidence suggests that it may even provoke 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 some viruses, including herpes viruses, Epstein-Barr virus and coronaviruses such as SARS-CoV-2, the virus that causes COVID-19 infections, can damage collagen, which forms connective tissue . or causing the body to produce less collagen.

“The viruses themselves will produce collagenase, an enzyme that breaks down collagen,” says Jaime Seltzer, scientific director of the nonprofit ME Action. “If someone already has a collagen deficiency, there is a possibility that that person is more susceptible to chronic disease associated with infection,” he adds.

It took Luciano more than a year of dealing with long-term COVID symptoms before she was able to find a doctor familiar with the signs of joint hypermobility, and even longer to find a doctor who could formally diagnose her with hypermobility EDS. Meanwhile, her symptoms continued to worsen to the point where she now has difficulty standing upright.

Looking back, Luciano wishes she had been diagnosed sooner so she could have taken steps to prevent the condition from getting worse. She also wishes that her mother, who became disabled 30 years before her and who may also have had undiagnosed EDS, could get the help she needs. “30 years later… the same thing is happening today,” Luciano says.