Double trouble: Hypermobility may increase Long Covid risk

“For a middle-aged woman who hasn’t had any actual injuries, I’ve had a huge amount of physical therapy,” says Liza DiLeo Thomas, a 52-year-old emergency medicine doctor in New Orleans and mom to five kids. “My neck muscles were always weak, my knees were bad. In retrospect, I was actually hypermobile, I just didn’t realize it.”

Hypermobility is a catch-all term for a spectrum of disorders characterized by joints capable of moving beyond the normal range of motion, often due to abnormalities in connective tissue. The most common of these disorders, which range from mild to severe, is known as Hypermobile Ehlers Danlos Syndrome (HEDS). 

HEDS seems to be more common in women and also may be connected to some cases of Long Covid. A recent study found that people with the condition were 30% more likely not to have recovered fully from Covid-19 infection, based on symptom surveys.

“I got my first Covid infection in March of 2020,” Thomas told The Sick Times. “After [my] second infection, I never recovered.” 

Thomas has not been able to return to work in the ER. Worse still, her kids brought home more Covid-19 infections, and each reinfection over the course of the next three years triggered novel, debilitating symptoms, such as painful skin rashes and mild myelitis, an inflammation of the spinal cord. “I believe I’ve had Covid a total of five times,” she said.

In April 2021, she ended up at the office of Tulane University School of Medicine neurologist Michele Longo, who was helming a new Long Covid clinic. Longo and her colleagues have discovered that vulnerability to Long Covid may sometimes be linked to hypermobility. 

Longo referred Thomas to multiple specialists, including Dr. Jacques Courseault, founder of Tulane’s specialty hypermobility clinic, launched in 2022. It is one of the few of its kind in the world. Collaboration between that clinic and Longo’s Long Covid clinic has yielded novel clues to the connection between the two conditions.

“The specialist at the clinic pushed along my iliotibial band and other parts of my leg,” recalled Thomas. “And he said, ‘Your muscle pain is not due to muscle damage. You’re hypermobile.’” Muscles will chronically contract to stabilize weak joints in hypermobile individuals, leading to chronic pain.

That insight gave clues to what might be off balance in Thomas’ body, and pointed the way for treatments that helped improve her function, including antihistamines, low-dose naltrexone, and lots of saltwater to help increase blood volume, as she was later diagnosed with dysautonomia and small fiber neuropathy. With her condition better managed, she now works part-time for the same hospital in an administrative role, mostly from home.

How a connective tissue disorder might increase risk of Long Covid

Longo, the Tulane neurologist, is the kind of doctor who listens closely to her patients 

“My migraine headaches brought me to neurology as a profession,” she told The Sick Times. “I’ve been living my whole life in that space of having a chronic condition that does not have a biomarker. That lends itself very well to believing my patients and empathizing with them.” 

Early in the pandemic, she started seeing chronically ill individuals who were much younger than her typical patient, and who had not recovered from an acute Covid-19 case. 

At her Long Covid clinic, she began to notice that some of her patients were hypermobile. She diagnosed them via the traditional Beighton scoring system — a simple in-office test which checks the flexibility of joints such as the fingers, elbows, knees, and spine. Then, she sent them over to the EDS clinic, where Courseault inevitably confirmed her suspicion. “Every patient I sent him was indeed hypermobile,” she said.

This past April, Longo and colleagues published a report on five hypermobile females with Long Covid aged 33 to 51. Once diagnosed and treated at the EDS clinic for common issues associated with hypermobility, they began to see some improvements. Longo and colleagues are now putting together a case series on fifty patients.

Treatments that may help

Treatments for EDS are multifaceted, but one simple intervention involves taking vitamin B supplements. The Tulane EDS clinic published preliminary findings in 2023 on the connection between some cases of hypermobile EDS and a deficiency in the active form of vitamin B9, known as methylfolate.

According to the researchers, individuals with certain genetic variations in the way they process B vitamins may need to supplement with metabolically active forms of folate and B12 that are highly bioavailable. The active forms of these B vitamins may be critical for forming healthy connective tissue.

Another intervention that has helped some hypermobile long haulers is treatment for mast cell activation syndrome, which has been linked to some forms of EDS. In this condition, immune cells called mast cells, which reside in connective tissue and along blood vessels, are easily sensitized to release substances like histamine. In Longo’s case series, patients received mast cell stabilizers like quercetin and Vitamin D.

In addition, there may already be a link between Covid-19, mast cells, and histamine. Some people with Long Covid have seen some improvements by using H1 and H2 antihistamines, like famotidine and loratadine.

Hypermobility isn’t exclusive to Long Covid

Much remains to be done to untangle the connections between hypermobility and Long Covid, but psychiatrist and neuroscientist Jessica Eccles says the findings have relevance for other infection-associated chronic diseases.  

In a 2021 study, Eccles and her colleagues looked at 63 individuals diagnosed with either fibromyalgia or myalgic encephalomyelitis (ME) and found that 80% of the participants were hypermobile. “And only a small portion of those patients knew they were hypermobile,” she told The Sick Times.

In fact, it was the ME community that worked hard to highlight the connections between hypermobility and infection-associated chronic conditions (IACCs). The advocacy organization #MEAction noted the connections as far back as 2015, when it was founded. “Many patients may have been mildly hypermobile,” said Jaime Seltzer, the organization’s scientific director, “but they became more severe after a viral illness.” A 2020 study of 229 ME patients in Sweden found “a large overrepresentation of hypermobility.” 

“Since Covid, there has been an enormous influx of new, chronically ill people,” said Seltzer. “And it’s important to talk about how these communities overlap. Very few people with ME/CFS or Long Covid have just one diagnosis. They are usually diagnosed with at least two disorders,” she said, mentioning dysautonomia, hypermobility, and mast cell activation syndrome. 

A small Russian study also found a link between fibromyalgia, IACCs like Long Covid and ME/CFS, and hypermobility. The study of three patients was conducted in 2021 at a Long Covid clinic established at St. Petersburg State University. 

“These patients all had evidence of systemic inflammation,” explained Varvara Ryabkova, a research assistant in rheumatology and one of the authors of the study. “Some of these Long Covid patients have done well on biologics,” she added, referring to medications that treat systemic inflammation, like Remicade.

It takes persistence

Even without Long Covid, it takes a typical EDS patient 10-12 years to get a diagnosis, according to studies. For some people with Long Covid, a diagnosis may be even more challenging.

“I got sick in 2021, just collapsed in my living room, unable to breathe, with a pulse of 39,” recalled Sara Anaya, a California school counselor with Long Covid, who was then hospitalized for 10 days and discharged with a diagnosis of functional neurological disorder or FND, which experts warn is an inappropriate and harmful diagnosis for people with Long Covid. She found she always needed a pillow, chair, or the wall to hold up her head. “I had a bobble head,” she told The Sick Times. 

Anaya has never formally been diagnosed with hypermobility, but those complaints are common among those with EDS. “Doctors never really checked me for anything,” she said. “I lost trust in the system.” Eventually she found her way to a doctor who prescribed medications that helped improve her symptoms. She has, she said, “been crash-free since February.”

As for Thomas, the emergency medicine doctor, she is functioning better on supportive treatments like low-dose naltrexone, a daily Zyrtec antihistamine, and an off-label medication called Ivabradine, used for dysautonomia.

She is closely watching her children, as two have shown features of hypermobility. “What helps the most is good quality sleep and pacing,” she says. “Having Long Covid changed me, and I’m now teaching other clinicians at the hospital about invisible illnesses, the patient experience, and how important it is to really listen to your patients.”

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Jill Neimark is a journalist and children’s book author. Her most recent picture book, Forest Joy (Blue Jasper Editions), just won a Family Choice Award.

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