Many people with postural orthostatic tachycardia syndrome (POTS) have difficulty exercising. While poor tolerance of exercise is one of the key features of the syndrome, physical activity is an important therapy commonly recommended for people with this syndrome. POTS is a neurologic disorder characterized by a significant rise in heart rate—at least 30 beats per minute for adults and 40 for teens—when going from a lying to a standing position. Other symptoms include lightheadedness, dizziness, palpitations, nausea, weakness, and feeing faint.

POTS is not caused by deconditioning, but deconditioning may result from it. In a study published in Pulmonary Circulation in 2016, David M. Systrom, MD, and colleagues evaluated more than 600 people who were referred to them for shortness of breath and an inability to exercise, including people who were diagnosed with POTS.

The researchers asked these study participants to exercise as part of the cardiopulmonary testing and found that the pressures that filled the ventricles of the heart with blood were low in those with shortness of breath and exercise intolerance and high in healthy people who were simply sedentary and out of shape. The researchers observed significant differences in these filling pressures even though both groups exerted maximum effort during the test. That meant there was a physiologic difference between people who couldn’t exercise due to shortness of breath or other symptoms and healthy people who didn’t exercise by choice. This study suggested that POTS was caused by abnormal cardiovascular physiology (something called “preload failure”) and not deconditioning.

A study published in 2016 in Heart Rhythm found that people with POTS had smaller hearts than healthy controls due to cardiac muscle atrophy. To find out if building up people’s heart muscles through an intense exercise training program would improve or eliminate their symptoms, researchers from the University of Southwestern Medical Center in Dallas developed a training program known as the Dallas exercise protocol that involved exercising while seated and then   progressing to exercising in an upright position.

The 251 study participants started exercising on a rowing machine in a recumbent position and after a few weeks walked on a treadmill for increasingly longer stints and with greater intensity over a period of three months. Seventy one percent of the 103 subjects who were able to complete the program experienced improved quality of life, and some participants no longer were considered to have POTS.

Sixty percent of study participants found the protocol too difficult and were unable to complete it. In people who have common co-occurring conditions—such as Ehlers-Danlos syndrome (a genetic connective tissue disorder that is prevalent in people with POTS), autoimmune disorders, or chronic pain syndromes—a less intense exercise program may be more appropriate.

Many people with POTS may wonder why they should exercise if it makes them feel worse. A simple reason is that being inactive will make them feel sicker in the long run. The most important rule for those trying to be more active is to “start low and go slow,” which will be different for everyone. Some people with POTS are minimally impaired and can participate in sports and even run marathons. For others, walking from the bedroom to the bathroom can feel like a marathon. However, even people with greater impairments can incorporate movement and exercise whether lying down or sitting on the floor or couch. These suggestions can help you get started.

Get an evaluation. Ask your doctor if it’s possible to be referred to an exercise physiologist, who can test your capacity and calculate your target heart rate range during exercise. He or she may develop an individualized routine. Currently, there are no data on safe exercise parameters for people with POTS. Generally, it is recommended not to exceed 140 beats per minute, especially when beginning an exercise program

Pace yourself. If you have severe fatigue or a diagnosis of chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME)—many people with POTS also have CFS/ME—you may need to work with a knowledgeable physical therapist or physiatrist to incorporate pacing. This allows you to be physically active while being mindful of post-exertional symptoms, which can cause a relapse and increase dizziness, difficulty thinking, and fatigue.  

Treat symptoms. Studies show that taking medications to control your POTS symptoms improves exercise tolerance and can lead to physical re-conditioning. Common medications include fludrocortisone (Florinef), which helps expand blood volume; midodrine (Proamatine) to help raise low blood pressure; pyridostigmine (Mestinon), which decreases orthostatic intolerance; and beta blockers such as propranolol, atenolol, or metoprolol, which decrease heart rate. Medications that treat other common symptoms of POTS, such as headache, muscle or joint pain, nausea, and fatigue can be helpful as well.

Make it doable. Set a goal to exercise just three to five minutes a day, then increase by one to two minutes every week. Start with leg lifts, especially if you have severe weakness, orthostatic intolerance (lightheadedness, dizziness, palpitations, nausea, weakness, or feeling faint when sitting or standing), or fatigue. Strong leg muscles are especially important because they help pump blood from the legs to the heart, which reduces blood pooling, high heart rate, and dizziness.

Timing matters. Schedule exercise in the afternoon, since POTS symptoms are typically worse in the morning, but avoid late evening exercise, which can disrupt your sleep.

Stay cool. If you overheat easily, which is common with POTS, try wearing a cooling vest or wrap a cold wet towel around your neck. Avoid exercising in hot or humid conditions.

Drink smart. Hydrate before and after exercising with 10 to 16 ounces of water taken with a salt tablet, like Thermotab, which contains about 450 mg of sodium chloride, or drink 10 to 16 ounces of an electrolyte beverage that contains sodium, such as Gatorade, Pedialyte, or Banana Bag oral solution. The added sodium improves blood volume, which is typically low in people with POTS, and may help with blood pooling.

Consider investing in equipment. Look for a second-hand recumbent or portable exercise bike or a rowing machine. These items should be relatively affordable and don’t require a lot of space. 

Find a pool. Because water reduces the effects of gravity, walking in a pool is much easier than walking on the ground. Just be careful when exiting the pool because you may experience temporary dizziness as you adjust to the full effects of gravity.

Allow room for recovery. People with POTS tend to recover from exercise more slowly than people without POTS and may experience lingering tachycardia (rapid heart rate) afterward. 

Be patient. It may take months to increase your stamina and endurance. You may notice less dizziness and tachycardia and find it easier to stand after a few weeks or months of exercise.

Dr. Blitshteyn is clinical associate professor of neurology at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences in New York and director of Dysautonomia Clinic in Buffalo, NY.