E is for Exercise

This is the fourth post as part of an 8- part series on a “SPLENDID” approach to the management of MCAS. Click here to start from the beginning!

The disclaimer: The following information is not intended to be personalized medical advice. Please consult your care team if you are considering starting an exercise plan. Working in-person with a professional such as a physical therapist is an excellent way to begin an exercise routine.

Exercise is a critical component to holistic healing for patients suffering from a number of chronic conditions, including the trifecta of MCAS, EDS, and POTS.

 

EXERCISE FOR MCAS

Patients with MCAS may find a few tips helpful when considering their exercise routine:

• Some patients need to pre-medicate with antihistamines or other mast cell medication
• Some patients do better indoors, while others are less reactive outdoors
• All patients who have been prescribed Epi-pens should carry them with them while exercising
• It’s also advised to exercise with companions and wear medical alert bracelets
• Some foods and medications can trigger anaphylaxis when they are ingested in close proximity to exercise. It’s best to space out the timing of these factors to reduce likelihood of reactions.
• The type of exercise depends on the person and their preferences. It should be enjoyable! Some patients enjoy walking routines, biking, body weight exercises, swimming, cardio machines at the gym, or weight lifting. Others focus on hiking and trail running or sports with friends. Yoga and pilates have tremendous benefits for helping regulate the nervous system and are highly recommended.
• Breathing exercises are also important for the nervous system. Deep diaphragmatic breathing and focusing on a longer exhale can help improve vagal tone and reduce the “fight or flight” and “freeze” nervous system tone that is commonly noted in patients with a history of trauma and/or chronic illness. (More on this to come in the next blog post about the nervous system!)
• On flare days at home, keep in mind that you can still exercise, even if it looks different than on good days. Some patients opt to do gentle spinal twists and breathing exercises on days they are flared, or aim to walk to the mailbox and back. Be compassionate with yourself when your symptoms necessitate a change in your routine.
• Whatever the type(s) of exercise, the American Heart Association recommends 30 minutes of moderate intensity exercise at least 5 days a week.

 

EXERCISE FOR EHLERS-DANLOS SYNDROME

For the hypermobile types of EDS, there are a few considerations when starting an exercise program:

• Know which joint positions to avoid. Because of the propensity of dislocation and subluxation in patients with EDS, certain activities and positions should be modified depending on the individual. For example, with the shoulder joint, you may want to avoid the baseball cocking motion (anterior instability), a scenario of distraction overpressure (such as carrying heavy groceries, an issue with inferior instability), and the push-up position (posterior instability).
• Know which muscles to focus on for strengthening. It’s important to create stability before advancing the movement patterns. For example, performing advanced plyometric movements or heavy loading of the knee joint without first ensuring adequate stability of the hip and core muscles can lead to issues.
• Know which ways you can support the joints. Straps, supports, braces, and taping are often helpful tools for this patient population. Their use should be guided initially with a professional who is knowledgeable in movement patterns and EDS, as it is possible to “over-brace” an area, leading to further weakness.

Many patients with EDS avoid certain activities (like yoga) altogether out of fear. However, the best approach is one of carefully guided modification as opposed to total avoidance of exercise. Many patients with EDS also experience POTS and have further considerations for exercise, mentioned below.

 

EXERCISE FOR POTS

Exercise has been shown to be a widely accepted key component to POTS treatment plans. Exercise expands blood volume and plasma volume, increases cardiac size and mass, and improves orthostatic tolerance. At a minimum, 8-12 week exercise protocols are ideal, though most patients continue exercising beyond that point because of the many system-wide benefits. Successful POTS exercise programs have 3 components: Cardiovascular exercise, strength training, and postural training.

Cardiovascular Exercise

Some guidelines suggest a maximal heart rate of 75-80% of the patient’s calculated max during exercise for POTS. However, measuring the heart rate range as a guide for exercise is not very useful in patients on beta blockers and other medications, so I recommend that patients use the Borg Scale of Perceived Exertion to determine their warm-up, recovery, and base paces. The Borg is a scale from 6-20.

General guidelines for POTS are that the warm up/recovery should be between 10-12 on the Borg, and the base pace should be in the 13-14 range.

 

 

If you become symptomatic during exercise, you want to:

• Decrease the exercise intensity (or stop if you are having emergency-type reactions)
• Ensure that you are hydrating during exercise
• Lay on your back on the floor to recover, with your legs propped up on some pillows or the wall, if needed

When starting out in your cardiovascular program, you want to pick an exercise form that is in a recumbent position. Stationary recumbent bicycles are a great option. If you don’t have access to a bike, you may also consider swimming or using a kickboard in the pool (once your vitals are stable), an arm bike, a rowing machine, or other supine or seated exercises. The pressure of the water in the pool can actually decrease POTS symptoms. Please talk to your PT if you have any equipment concerns or questions as to what type of exercise you should consider.

Sample starting instructions:

• Begin your cardio 3 days a week for 20 minutes.
• Perform a 5-minute warm-up (Borg 11-12 or less), 10 minutes of base exercise (Borg no higher than 13-14), and a 5-minute cool down (Borg 11-12 or less).

Keep in mind that patients who have been bed-ridden for a long time may need to start with 1-5 minutes per day instead of 20 minutes. This is general advice for the average patient, but you’ll want to customize it with the help of your physical therapist.

The goal for cardiovascular exercise is to build up to 30+ minutes of continuous base pace (Borg scale 13-15) exercise. Over time, you’ll find yourself able to progress to more upright exercise options like the elliptical, stair stepper, walking, and eventually jogging/running for some patients.

It’s common to get fatigued after exercise and it’s also common to notice more symptoms of POTS initially as your body adapts to starting a new exercise routine. Remember to pace your daily activities. Avoid things like house cleaning and shopping following your exercise sessions, especially early-on in the program. Also avoid over-sleeping and try to resist the urge to nap right after exercise.

The typical progression for cardio exercise can look like the following:

Month 1 – recumbent bike, rowing, pool exercise (swimming or kicking)

Month 2- upright bike instead of recumbent, some patients are able to add flat treadmill or elliptical

Month 3- elliptical, treadmill

Months 4-6- if you are doing fine at this point with upright activities, your PT may guide you in integrating jogging, running or sport activities

 

Strength Training

The strength training program begins with laying down exercise, and eventually progresses to seated and then standing exercise. Alternately, some patient may already be performing yoga or pilates and may use this exercise as their strengthening each week. Upper and lower body exercises are typically included, with a greater focus on the lower extremities which have been shown to significantly improve tachycardia and POTS symptoms in the literature.

Sample starting instructions:

• Perform strengthening two days a week, but not on the days that you are doing the cardio exercise.
• Strength programs begin with about 20 minutes of exercise and build up from there.
• Begin exercises training for endurance with body weight or very light resistance and 12-15 repetitions, 2-3 sets of each exercise.

Examples of exercises:

• Supine (on your back): bridging, marching, diagonal pattern arm and leg lifts
• Prone (on your belly): supermans, planking, gluteal exercises, exercise ball progression
• Side lying: side planks, hip abduction, clams, open book mobility exercise
• Seated: leg press, calf exercise, hamstring and quadriceps strength, hip strength, seated row, pull-downs
• Standing: squats, lunges, hip strengthening with resistance bands, step ups

Talk to your PT for a customized/personalized plan and for additional exercise ideas.

 

Postural Training

To work on upright standing tolerance, the third component of the exercise program involves static standing against a wall. Make sure you have a chair nearby and a watch on when you practice this progression. If nobody is able to supervise you while you do this, find a wall in front of a bed. You’ll start out with a goal of 1 minute of standing against the wall at one time (or as long as is tolerated that first day). Don’t allow yourself to fidget with your legs- this is cheating! The ultimate goal is ten minutes of static standing without symptom exacerbation; when you achieve this, you’ll be graduating from this aspect of your exercise program!

Sample starting instructions:

• Perform the postural wall standing exercise three times a day.
• If you experience any symptoms (dizziness, lightheadedness, nausea, chest pain, headache, blood pooling) you can stop before your goal time.
• Expect that some days will be better than others.
• Stick with a goal time and make sure you are stable with it for at least a week before adding on time. When the previous level of time is no longer causing symptoms, progress by adding 30 seconds to your time for the following week(+).

 

Other Suggestions & Thoughts for POTS

• Make sure you have enough fluid intake around your exercise. You should drink at least 16 ounces of fluid 30 minutes prior to, during, and after exercise (in addition to your normal fluid intake for the day).
• Spread out or modify your house chores throughout the week.
• Make effort to remain upright as much as possible during the day. Try to get up and move a little bit every hour during the day. Avoid complete bed rest.
• No household or exercise activity should exceed 15 on the Borg scale.
• Some patients do well with elevating the entire head of the bed by 4-6 inches. (Move the whole bed; propping on pillows does not have the same effect.)
• It’s wise to have a shower chair and grab bars available in the bathroom tub/shower area.
• Compression garments help some patients and can be used during exercise.
• Avoid alcohol, as this tends to make POTS and dehydration worse. Carefully consider caffeine intake, as some patients find that it makes symptoms worse.
• Make sure that your body temperature is well regulated. Some patients experience a worsening of symptoms with heat. Ensure adequate ventilation in the exercise space.
• Most patients experience fatigue in the first month of this program.
• Most patients notice improvements in POTS symptoms after 2-3 months. This is not a “quick fix!” Exercise for POTS is a marathon and not a sprint!
• Exercise should be treated like it’s a preventive supplement and maintained for life! Adherence to the exercise schedule is crucial to seeing improvements.