What is POTS? This strange disorder has doubled since the pandemic

In late 2021, after 18 months of long COVID symptoms, Oonagh Cousins, a member of Great Britain rowing team, was ready to resume training. She’d contracted COVID-19 in early 2020, and although her initial case was mild, Cousins spent the next year and a half experiencing a fatigue that went far beyond just feeling tired. “It was like a deep sickness,” she says, a “sludgy, deep weakness” that flared up after even mild exertion.

After that lengthy recovery period, Cousins’ only remaining symptom was a very mild case of postural orthostatic tachycardia syndrome—POTS—which is a type of dysautonomia characterized by an abnormal rise in heart rate after changing position, like sitting to standing. Patients with POTS report a variety of symptoms, including dizziness, fatigue, brain fog, and gastrointestinal disturbances.

Cousins is among millions of people living with POTS, a number that is estimated to have doubled since the beginning of the pandemic. She's not the only elite athlete with the disease either: U.S. Olympic swimmer Katie Ledecky revealed in her new memoir that she is also living with the condition. Some of the known triggers include pregnancy, surgery, or a viral illness, such as COVID-19. A subset of these POTS patients also has a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterized by post-exertional malaise (PEM)—a situation in which symptoms worsen after exercise.

For patients with PEM, pushing past their physical limits—often encouraged in POTS recovery exercise protocols—can lead to major crashes. As a result, many patients with POTS and ME/CFS report being given inappropriate guidance on exercise, the consequences of which can be severe.

“They don’t teach us about ME/CFS or POTS in medical school,” says Sujana Reddy, a resident physician at East Alabama Medical Center, who developed both conditions after a COVID-19 infection in 2020.

Exercise and POTS

When Cousins felt ready to resume her training, she consulted with her doctors, who told her that the cure for her dysautonomia was exercise. With their approval, Cousins eased back into training, with three workouts a week.

After a full year of training, she had a major relapse, her dysautonomia having gone from mild to severe, which she attributes to over-training. "It was basically an accumulation of dysautonomia and post-exertional malaise,” Cousins says. As she and many other POTS patients are discovering, the relationship between exercise and dysautonomia is more complicated than the research suggests.

According to a recent estimate by the CDC, six percent of American adults are currently living with long COVID symptoms. With an estimated 79 percent of long COVID patients meeting the criteria for POTS, patients and healthcare practitioners are finding it necessary to re-evaluate how exercise fits into management of the condition.

Although exercise is considered to be a first-line treatment for POTS, in a survey of long COVID patients 89.5 percent of patients reported relapses after exertion, while other patients report difficulties with following some of the exercise protocols. As a result, the National Institute of Health and Care Excellence cautions against using graded exercise therapy for treating post-COVID fatigue.

For POTS patients whose condition wasn’t triggered by a COVID-19 infection, exercise can be helpful, but as many have discovered, it’s not a cure, nor is it an effective first-line treatment.

As a recent study has shown, although the majority of POTS patients use non-pharmaceutical treatments, such as exercise, to manage their symptoms, they are not as effective as pharmaceutical treatments. Still, many patients report being expected to prove that exercise alone is not enough to treat their symptoms, before their doctors will consider putting them on medication.

“A lot of doctors think that salt, fluid, and exercise is the only treatment patients need,” says Lauren Stiles, the founder of Dysautonomia International and a research professor in neurology at SUNY Stony Brook, who developed POTS in 2010. “That is very outdated thinking.”

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When exercise backfires 

As a number of studies have shown, exercise can decrease POTS symptoms, by making the heart more efficient and encouraging the body to produce more blood. In POTS exercise protocols, patients start with cardio in a recumbent position, such as rowing, swimming, or a recumbent bike, which helps avoid triggering symptoms by avoiding an upright position. Patients also do strength-training, which helps return blood to the heart more efficiently.

However, just as with any medication, there are nuances to the benefits of exercise, whether it’s figuring out the right amount and intensity, or screening for conditions that are often associated with POTS, for which exercise may be contraindicated. For other conditions, such as ME/CFS, exercise can lead to debilitating crashes.

For one of the major studies examining the effect of exercise on POTS symptoms, of the 103 patients who finished the three-month Levine exercise protocol, 71 percent no longer met the criteria for the disorder. However, the study had a 60 percent drop-out rate, with only 103 of 251 enrolled participants completing the protocol. The study also excluded patients who had other conditions, such as autoimmune disorders, that are often found in POTS patients.

“It’s rare for me to find a patient who gets referred to me with POTS, who doesn’t also have other comorbid conditions, such as hypermobility,” says Clayton Powers, a physical therapist at the University of Utah, who specializes in treating patients with POTS.

Fitting their own needs 

Some patients have found POTS exercise programs to be useful, but only if they progress at a rate that is much slower than suggested and only if they add in medication.

For Stiles, who was a competitive snowboarder before developing POTS, exercise did not relieve her symptoms. However, after she was diagnosed and treated for an autoimmune disorder, which included regular infusions of intravenous immunoglobulin, “I went from bedridden to ice skating,” Stiles says. “Medication allowed me to very slowly work my way back into being an athletic person.”

A number of POTS patients, including many long COVID patients, also meet the criteria for ME/CFS, the hallmark symptom of which is post-exertional malaise. PEM is often characterized by a flu-like feeling, such as swollen lymph nodes, joint and muscle aches, and low-grade fevers that develop within hours and days following over-exertion.

“My world as a clinician is broken down into ‘Do you have post-exertional malaise or do you not have post-exertional malaise?’” says Todd Davenport, a physical therapy researcher at the University of the Pacific. “It’s a very important clinical decision point.”

Reddy, the resident physician in Alabama, spent the early months of her illness pushing through, only to progressively get worse. Eventually, at the urging of her doctors and family, she started physical therapy, only to experience a major crash, which left her bedbound for a month, unable to tolerate even minor stimuli such as light or sound.

For Whitney Fox, who was diagnosed with ME/CFS and POTS in 2019, even small amounts of exercise pushed her into a cycle of over-exertion followed by crashes, during which she was barely able to get out of bed. “I kept trying and trying, and I kept getting worse and worse,” Fox says.

For Lindsay Levinson, a long COVID patient with POTS and ME/CFS, understanding her new limits on exertion has been a steep learning curve, one that goes against all her former instincts. “I’m good at pushing myself,” she says. At the recommendation of her doctors, Levinson tried resuming her spinning classes, which had been her favorite activity before getting sick. After a month of doing once-a-week classes at a gentle pace, she had a massive relapse, characterized by full-body pain, and an inability to complete simple chores, such as bathing or cooking dinner.

Relapsing also kept Cousins housebound for months. After receiving treatment that includes medication, she’s been able to return to a more functional life with some gentle exercise, such as swimming laps or going for walks. “I’m trying to listen to my body, and do what my body asks for,” Cousins says. “I just want to be able to find a way to have a happy, healthy relationship with exercise, that makes me feel good.”