Many people with postural orthostatic tachycardia syndrome (POTS) feel miserable all of the time. The idea of exercising is almost insulting when you are highly symptomatic, and actually exercising feels like an impossible task. The fatigue from POTS is excruciating and is often accompanied by unremitting heaviness and pain in the legs. Although it may be the last thing you want to do, exercise is an important part of the overall plan to a better quality of life.
In at least some people with POTS, deconditioning from lack of general movement and exercise can exacerbate the symptoms of illness. Some of Dr. Levine's studies have demonstrated a lower stroke volume (amount of blood pumped out of the heart in each beat) and smaller size of the heart in people with POTS. Exercising can help to increase both the stroke volume and overall heart size to normal levels. Dr. Levine emphasizes that the position of your body during exercise is important. Always start with recumbent exercise like swimming, rowing, and recumbent bicycle and work your way up to upright exercises. As always, be sure that you discuss your exercise regimen with your physician to be sure that it is safe for you.
Build up the number of minutes spent exercising very slowly. Many with POTS have exercise intolerance and orthostatic intolerance (symptoms increase when standing). You might start with five minutes on a recumbent bike. Do five minutes for five days a week, and then add one minute to the exercise regimen per week. Eventually, you want to build up to 30 minutes per day for at least three days per week. This is a long, tough road, but it may eventually pay off. A little exercise every day is better than none at all. You could also try some recumbent yoga poses as you begin.
Recumbent aerobic exercises are recommended. Consider purchasing a recumbent stationary bike or rowing machine. If you have access to a pool, swimming is an excellent source of exercise. Exercise doesn’t have to be vigorous. Find something fun for you. Take your time, and start with just a few minutes at a slow pace every day.
Mix strength training with aerobic exercise. Two days per week should be devoted to strength training of the legs and core. Focus on exercises that can be done in a chair or on the floor, like a seated leg press, leg curl, leg extension, calf raise, chest press, and seated row. Exercises for your core might include abdominal crunches, back extensions, and side planks. Any Pilates exercises that do not require standing would work well on these days. To do this at home, you might consider purchasing resistance bands and/or a physioball.
Use a reward system. Consider using a visual means to see how much you exercise over time. Put a bead, marble or penny in a cup for every five minutes you exercise. It is encouraging to see them build up over time. For kids, these beads can be traded in for video games, articles of clothing, or whatever reward they want. They love it!
Exercise to tackle insomnia. If sleep is an issue, exercising in the late afternoon or early evening is the best time to combat insomnia.
There is an exercise protocol that has been developed for people with POTS. Consult your doctor before trying it. It doesn't work for everyone, but has been a godsend for some. This protocol gives information about core and leg strengthening exercises, as well as cardiovascular workouts. Near the end of the document, calculations for base heart rate and maximum heart rate are shown. These are written for teenagers. If you need to calculate your own safe heart range ranges for your own age, please visit Calculating your Exercise Heart Rate Zones.
CHOP Modified Exercise Program for POTS
Originally developed by Dr. Levine, this modified exercise protocol from the Children's Hospital of Philadelphia is a widely used guideline for people with POTS to work to increase their stamina.