When evaluated by a physician for Postural Tachycardia Syndrome (POTS), they may or may not tell you that exercise has been found to be the most effective and restorative therapy available for those with autonomic dysfunction. Studies have found that people who opt for exercise over beta blockers, however, not only benefited by a decrease in standing heart rate, but they also had improved physical function scores and therefore a better quality of life, unlike those on beta blockers (Web MD).
In people with POTS, the heart rate often elevates in part due to having a deconditioned, undersized heart. The chambers of the heart shrink, as does the overall heart muscle mass. This is often referred to as “Grinch Syndrome” and this deconditioning causes the heart to beat much less efficiently, causing the tachycardia on standing because the heart has to pump a lot more to get blood to the areas needed. The only way to increase the size of your heart, allowing it to pump more blood with each beat, is to condition it with cardio exercise (myheart.net).
Exercise has many other benefits that directly relate to POTS, as well. Exercise training has been proven to expand blood volume and plasma volume and increases low blood oxygen levels.
These in turn have been associated with improvement in symptoms, and therefore exercise training is often suggested as a therapy for POTS syndrome.
One study looked at 3 months of exercise training, 20-30 minutes 3 times per week, starting with exercises performed in a sitting position and gradually progressing to higher intensity exercises and those performed in an upright position. It was found that VO2peak increased by 8% in POTS patients, a significant increase in physical conditioning. Heart size and blood volume were also found to increase. Around half the patients improved to such a degree that they no longer fulfilled the criteria for a diagnosis of POTS syndrome. Several studies have confirmed these effects. (myheart.net)
Many of us who have suffered from undiagnosed POTS for years, also suffer from severely deconditioning of the muscles and body overall, so exercise will benefit us in every way and will likely give us a greater quality of life and more freedom overall from our symptoms, allowing us to lead more normal lives.
How to Get Started
First, talk to your vascular cardiologist about exercise and help them form a plan to get started. If you’re homebound or severely deconditioned, you and your doctor may want to begin with physical therapy or a cardiac rehab program. There are even inpatient and at home programs available that might be an option for you.
Level 1 – Reclined Gentle Movements
If you are severely deconditioned after years of undiagnosed POTS, you need to start out slowly and gently, working to rebuild lost muscle mass throughout the body. It is possible to do this at home on your own, like I have, but you need to understand the rules to avoid setbacks and other issues and you still need to talk to your doctor to be sure that the path you choose is safe for you.
These are some of the recommendations made by Dysautonomia International on how to get started on your own.
Leg Pillow Squeeze – while laying down or reclined in bed, put a pillow folded between your knees and squeeze. Hold it for 10 seconds. Repeat.
Arm Pillow Squeeze – put the pillow folded between your palms and squeeze together as though you were putting your hands into a praying position. Hold it for 10 seconds. Repeat.
Alphabet Toes – while laying in bed, write your name in the air with your toes. If you can build up your strength, write the whole alphabet. Do this several times a day.
Side Leg Lifts – while laying on your side, lift your leg up sideways and then bring your leg back down, without touching your legs together. Repeat.
Front Leg Lifts – While laying on your back, life your left leg up, pointing your toe towards the ceiling. Repeat. Switch to right leg.
Gentle Stretching – any kind of stretching helps move blood around in the body and takes stress of your joints if you have been sitting or laying in the same position for a long time. Go through the entire body doing mild stretches, from feet, to legs, to back, to arms, to neck. Doing this when you wake up can be a great way to start the day, and repeating your stretches before bed can help you relax and sleep better.
Personally, I also included exercises that help to condition the core and back muscles, such as these, but it took time to build up to them. Listen to your body and let it guide you, avoiding too much soreness, which is the biggest deterrent to exercising regularly:
Another great option for getting started is a program like Clinical Somatics, gentle exercise designed specifically to help decrease pain and aid the autonomic system.
Level 2 – Recumbent Cardio Exercises
Once you’ve built up your muscles a bit (this can take several weeks), you can begin with slightly more challenging strengthening exercises, as well as some cardio. At this stage, your cardio should be something which doesn’t require regular upright exercise, but these are some great options to try:
Always begin your workout with 5-10 minutes of stretching and/or yoga to warm up your muscles and protect your joints from injury, unless you have EDS. With EDS, you should never stretch or take part in Yoga, because stretching stretches connective tissue rather than muscle. Zebra connective tissue is stretchy by default and causing it to stretch further will often cause injury to that tissue (for more information, see my article on EDS and Exercise.
Since the point of these exercises is to get your cardiovascular system to be more efficient, you will want to set a target heart rate for your workout. You should speak to your doctor about this because medications and other medical conditions can impact your target heart rate, but most patients can tolerate a workout at 75% to 80% of their maximum heart rate. Mayo Clinic has a Target Heart Rate Calculator you can use as a guide when speaking with your doctor.
You may want to purchase an exercise heart rate monitor to wear during your workouts to help you keep your heart rate within your target zone. Dysautonomia International does not endorse any specific products, but exercise heart rate monitors with chest straps are usually more accurate than pulse oximeters you place on your finger. This is especially so for dysautonomia patients who have abnormalities in peripheral blood flow (common in some forms of dysautonomia), as this is more likely to give an inaccurate reading using a finger based monitor.
Suggested reclined cardiovascular exercises include:
Rowing – use a rowing machine, or if you are feeling well enough, a kayak. You may want to start out slow, maybe 2-5 minutes a day. At your own pace, adding a few minutes per week, try to work your way up to 45 minutes per day, 5 days a week, with 30 minutes of your routine done in your target heart rate zone. Be sure to warm up at the beginning and cool down at the end.
Recumbent Biking – recumbent exercise bikes are different than regular exercise bikes. They seat the rider in a reclined position, rather than upright. Try recumbent biking a few minutes a day, adding a few minutes each week, until you can work out 45 minutes a day, five days a week, with 30 minutes of that workout in your target heart rate zone. Be sure to warm up at the beginning and cool down at the end of each workout.
Swimming – The pressure from water helps prevent orthostatic symptoms. Dysautonomia patients who have been bedridden for years may be able to stand upright for an hour in a pool, because the pressure from the water prevents orthostatic symptoms from occurring, or lessens their impact. Dysautonomia patients can take advantage of this to get a good cardio workout, or to focus on stretching and strength training in the water. Always swim with a spotter or a buddy who can keep and eye on you, just in case you develop lightheadedness or other symptoms that would make it unsafe to be in a pool. It may be best to start your swimming exercise program at a pool with a lifeguard, or with a Physical Therapist who specializes in aquatic therapy. A good old fashioned kick board can be a great tool for dysautonomia patients. You can kick your way around the pool, which gives you a good cardio workout, and all that kicking helps strengthen your legs. Toning up your legs and core is a great way to minimize orthostatic symptoms.
Just because you’re in phase 2 doesn’t mean that you should stop conditioning your muscles. In fact, you should continue to condition your muscles at least 2-3 times a week, offering your body bigger challenges as the exercise becomes too easy by adding reps, weight or choosing more challenging exercises. At this stage, you still want to be doing most of your exercise seated or prone. Some great programs to try instead of the basic exercises above would be pilates, T-tap, or circuit training at your gym beginning with a very light and reasonable weight. Just be sure to skip the standing exercises until you’ve hit level 3.
Level 3 – Normal Workouts
Some dysautonomia patients are able to jog, run marathons or walk several miles a week. These patients should do whatever they can to continue these activities. Dysautonomia patients who are well-conditioned should exercise 45 minutes a day, at least 3 days per week. Special emphasis should be placed on leg and core strength, and cardiovascular exercises (Dysautonomia International).
Of course if you have another condition, as many POTSies do, you need to be sure that you’re choosing the right exercise for that condition, such as with EDS. You also want to stay within target heart rates. Target heart rate should be 50-69% of your maximum heart rate. When doing high intensity interval training, it shouldn’t go above 90%. The chart below will help:
Things to Watch Out For:
- Be sure to monitor your heart rate when working out to ensure you’re getting a normal autonomic response (increased heart rate with increased vigor)
- Stay well hydrated. Avoid working out first thing in the morning, as we are often a little dehydrated when we first wake up. Get plenty of fluids and electrolytes before, during and after your exercise routine.
- If your heart rate doesn’t respond to exercise by increasing normally with rapid movement, STOP. This can be a sign of dehydration or electrolyte imbalance and you probably need to take the day off to replenish. If it happens despite great electrolyte levels, take a look at this article for possible causes (it could even be a good thing, but sometimes not) and consult with your doctor.
- Consider using Oral Rehydration Salts or a similar high quality electrolyte mix that’s equivalent to IV fluids to keep your electrolyte levels at peak.
- Exercise as much as possible. Most of the articles I read suggested three times per week, but five times per week is the standard for optimal health. Forty-five minutes per session is ideal. However, you want to work your way up to these goals and starting out with whatever you can handle is best. Any workout is a good workout and will allow you to build up your stamina. I started out at 10 minutes of gentle exercise, then added working with a FasciaBlaster (which has the benefit of increasing circulation, decreasing pain and freeing up the muscle to grow better) before I started exercising five times a week with more challenge.
- Be aware you may need to take medication to help control your POTS during the course of reconditioning your body. Some of us POTSies are in such poor shape that doing so without medication just isn’t possible. I had to take midodrine before I could tolerate any exercise. Discuss medications with your doctor and be sure to monitor your resting blood pressure and symptoms so you know when they need to be adjusted. It’s entirely possible that you won’t need the medications once you’ve established a good work out regimen and gotten to level 3, but some of us still need it. That’s why it’s so important to be treated by a vascular cardiologist for this condition.
Beginning won’t be easy, no matter what level you’re at, but doing exercise at your level with slow progressions will make it much easier. You may even find that you enjoy exercise and will definitely enjoy the new freedoms you will benefit from as you progress. It will reduce your fatigue, the frequency of tachycardia events, your pain levels and your ability to adapt to change, along with many of the other symptoms associated with POTS.
When I began exercising just about a year ago, I was bedridden. Now I work out five times a week by riding a recumbent bicycle, doing many of the floor exercises I presented along with the addition of some upright exercises. Now I can enjoy plenty of time out doing the things I love, like walking in the park, shopping, swimming, enjoying the performing arts live, socializing and volunteering. Each week brings exciting new discoveries about how my body feels, my rising energy levels and my overall health. It’s the best thing I could have done for myself!