Important Lifestyle Changes: PoTS and Exercise
Research has shown that exercise can be an effective strategy for the management of PoTS. However, one of the biggest challenges for people living with PoTS is that many of us experience exercise intolerance. This can lead to the dilemma of knowing that exercise can be helpful to manage our symptoms, but not knowing how to incorporate exercise into our lives without feeling symptomatic.
It could be useful to think of exercise as a form of medicine for PoTS. It has the potential to reduce our symptoms over time but, just like with medicine, we know that different types, doses, and frequencies may be suitable for different people.
On this page, we are going to explore the following topics:
- What is exercise?
- Exercise professionals & PoTS
- Exercise goals for PoTS
- Types of exercise
- PoTS management strategies for before and after a workout
- Understanding exercise and symptom exacerbation
- An introduction to and considerations for ME/CFS
- Additional considerations
Your body, your choice:
Before we get started, always remember that we know our bodies better than anyone else and it is important that we guide our own care. We provide this information for informative purposes only but hope that it may be helpful to you in making decisions around whether you would like to exercise or not.
What is Exercise?
Exercise is defined as “activity requiring physical effort, carried out to sustain or improve health and fitness”. This means that we are performing activities on purpose with the aim of improving our health. Regarding PoTS, there are two key things that we may want to keep in mind here:
- Those living with PoTS have varying physical capacities – despite being diagnosed with the same condition, we can all be incredibly different. This means that our physical capacities can be variable, and that exercise could look different from person to person.
- Activity exists on a spectrum – exercise may take the form of activities such as walking and swimming, but exercise may also include activities such as daily care and cleaning tasks, depending on the person.
These points are important reminders that one size does not fit all when it comes to exercise and PoTS. This means that “starting low and going slow” can be an excellent approach to introducing exercise into our routine, which is a similar recommendation that many of us receive when introducing medications. Additionally, PoTS specialised exercise professionals may provide tailored exercise programs to help guide people with their exercise.
Exercise Professionals:
Supervised exercise programs have been shown to be the most effective for the management of PoTS, but as with other healthcare professionals, it can be important to seek out an exercise professional who has a specialised understanding of PoTS. Physiotherapists and Exercise Physiologists are University educated exercise professionals that focus on the rehabilitation and management of injuries and health conditions.
- Physiotherapists – treat and manage acute and chronic conditions using manual therapy, therapeutic exercise, exercise plans, and health education. A physiotherapist can also assess and diagnose injuries and certain health conditions.
- Exercise Physiologists – treat and manage chronic health conditions using clinical exercise interventions, exercise prescription, and health education which focuses on a person’s health condition and how the body responds and adapts to exercise.
These professions can both overlap and work well together, but their main commonality is that they use exercise to help people manage their chronic health condition safely and effectively.
Exercise Goals for PoTS:
We know that people with PoTS can have different exercise capacities so it’s important that we set our own personal baselines when getting started. It is also encouraged that we start with a conservative approach, which could even involve introducing a baseline of 60 seconds of exercise and then progressing this over time.
It is currently recommended that individuals with PoTS gradually introduce gentle exercise into their routine with the aim of building up to 3-4 exercise sessions per week, with the option of further building to 5-6 sessions per week after a minimum 3-month successful training period. Of these training sessions, it is recommended that 1-2 of these sessions could be a resistance training session while the focus remains on aerobic exercise.
Types of Exercise:
Whether working with an exercise professional or on your own, it can be important to understand the different types of exercise and their benefits for the management of PoTS. In this section, we will outline these different types of exercise and provide examples of each.
Aerobic Exercise
Aerobic exercise involves repeated patterns of movement which usually involve the large muscles in our body, such as our legs. Aerobic exercise is the most encouraged form of exercise for the management of PoTS, as studies have shown that it can assist with the improvement of symptoms over time and may not require as much effort on the circulatory system as weight training.
Exercise
Walking
Benefits & Considerations
- Can be completed around the house, outside, or at a shopping centre depending on our personal circumstances, ability, and preference.
- Walking is a functional activity so it can translate well to other tasks that we might want to do more of.
- Has a lower limb focus which can be useful for improving circulation and managing PoTS symptoms.
Pool walking
- Being in the water can assist by compressing blood vessels and reducing blood pooling.
- Walking in the pool also reduces our need to weight bear which can be more manageable on our joints.
- Be mindful of heated pools or the warm external environment of indoor pools, as heat can exacerbate PoTS symptoms. Remember to plan around this with strategies such as limiting the time you spend in the heat and having a cool shower afterward.
Swimming
- Being in the water can assist with compressing blood vessels and reducing blood pooling.
- Swimming can involve full body strengthening as it requires both upper body, trunk, and lower body movements.
- Be mindful of heated pools or the warm external environment of indoor pools, as heat can exacerbate PoTS symptoms. Remember to plan around this with strategies such as limiting the time you spend in the heat and having a cool shower afterward.
- Floats and other water aids can be useful options when getting started.
Rowing
- Involves exercising in a seated position which may be tolerated better by those with PoTS.
- Rowing can involve full body strengthening as it requires both upper body, trunk, and lower body movements.
Cycling
- Involves exercising in a seated position which may be tolerated better by those with PoTS.
- Can be performed using a recumbent bike to further reduce the effect of gravity on the circulatory system.
- Has a lower limb focus which can be useful for improving circulation and managing PoTS symptoms.
Resistance Training
Resistance training can also be called strength training or weight training. This type of training involves performing muscle contractions against external resistance to increase the endurance, strength, power, and size of the muscles involved. Although it may be considered a secondary form of exercise to aerobic training for PoTS, resistance training is still encouraged for the management of PoTS. Therefore, it is recommended that resistance training still be included in an exercise regime, but that it may be completed less frequently than aerobic exercise.
Exercise
Body weight training
Benefits & Considerations
- No equipment required.
- Can be completed at home.
- Exercises can be selected to be laying down or seated.
- A gentler form of weight training as it doesn’t require additional weight.
Weight training
- Could be completed at home with weights or resistance bands or at the gym.
- Going to the gym can be useful for accessing seated weight machines and supervision.
- Heavier weights may challenge the blood pressure system and therefore be more challenging for people with PoTS.
Pilates
- Can provide full body strengthening due to the variability in movements.
- Different options are available including self-guided sessions, online classes, and in person classes.
- Exercises can be done laying down as these types of exercises are often ground based or done on a reformer Pilates machine.
Yoga
- Types of Yoga can be variable with some focusing on relaxation, flexibility, or resistance training.
- Different options are available including self-guided sessions, online classes, and in person classes.
Preparing for a workout
Keeping up with our usual PoTS management strategies can help with our general wellbeing and our exercise tolerance. However, we have outlined below some strategies that can be particularly useful and highlighted why they can help.
Strategy
Hydration
Benefits
- Drinking two glasses of water (with or without electrolytes) can temporarily increase blood pressure which may improve exercise tolerance for some people with PoTS.
Nutrition
- Digesting large amounts of food can leave people with PoTS feeling more symptomatic, so it is recommended that we wait 1 hour after eating a meal before exercising.
Compression
- Compression garments can assist with reduction in blood pooling, so some people with PoTS may find it useful to wear these when they exercise.
Medications
- Different medications can have varying affects on our bodies and, in some cases, can improve our ability to exercise. Be sure to speak to your healthcare professional about the medications that you take and how the timings of these could influence your exercise tolerance.
Temperature
- Warm environments can cause more blood pooling to occur and increase PoTS symptoms, so it can be helpful to plan around the weather eg. time of day and weather forecast and promote a cool environment when exercising.
Post workout recovery tips
Preparing for exercise is a great start, but there are also things that we can do at the end of a workout to help minimise our PoTS symptoms. The commonality of these strategies is that we are continuing to support our body with circulating blood flow back to the heart. Again, we outline these strategies and their benefits below.
Strategy
Cool down
Benefits
- Try to avoid sudden stops in activity or standing still for too long and consider performing a low intensity cooling down activity to avoid sudden decreases in blood pressure.
Legs up
- Laying down or sitting with the leg raised higher than the hips can use gravity to help blood return to the heart and reduce how hard our body needs to work to do this on its own.
Compression
- Continuing to wear compression garments or putting them on after exercise can assist with a reduction in blood pooling.
Exercise and symptom exacerbation:
Exercise intolerance is common with PoTS and this means that we can experience an increase in symptoms when we exercise above our personal capacity. Having PoTS means that we don’t regulate our circulation (blood flow) effectively, but when we exercise the demand on our circulatory system increases. Our body is already doing a great job at keeping us upright under challenging circumstances, so it makes sense that when we challenge our body further with exercise, we can experience louder symptoms.
Sometimes we hear this increase in symptoms referred to as Post Exertional Symptom Exacerbation (PESE) or Post Exertional Malaise (PEM). PESE and PEM are interchangeable terms and have been commonly used in the literature, particularly when discussing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some of us may simply call PESE/PEM a “crash” but, by definition, PESE/PEM refers to a worsening in symptoms following physical or mental exertion.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
It is not unusual for someone living with PoTS to also have a diagnosis of ME/CFS. People with ME/CFS are especially prone to PESE/PEM. If they feel ready and would like to incorporate physical activity or exercise into managing their ME/CFS, the National Institute for Health and Care Excellence (NICE) guidelines recommend that this should be overseen by an exercise specialist as part of an ME/CFS specialist team. It should also be noted that Graded Exercise Therapy (GET) is not recommended. Further information on physical activity and exercise in regard to ME/CFS can be found in the NICE guidelines here.
Additional Considerations
Co-occurring conditions – people living with PoTS may have more than one health condition, so it’s important to consider how these conditions affect us and how they might influence our choices and modifications around exercise. Varying recommendations can exist for different conditions, which can become confusing, so be sure to speak with your health care professional or exercise specialist if you aren’t sure.
Hypermobility – there is a high prevalence of hypermobility in the PoTS community, and this is a key consideration when exercising. Additional modifications to exercise to promote balance while avoiding joint pain, subluxations, and dislocations is essential for these individuals.
Lower limb exercise – lower body exercises are favoured for the management of PoTS as strengthening muscles in the legs can assist with improving circulation and reducing blood pooling.
Posture – ground based, seated, and recumbent forms of exercise tend to be tolerated better by people with PoTS, as these positions reduce the impact of gravity on our circulatory system making it easier for us to perform movement.
Start low and go slow – naturally we may want to move ahead with our exercise as quick as possible, but it’s important to aim for sustainable exercise patterns. This may mean that we set a baseline that feels “too easy” at first and complete this consistently before slowly progressing what we are doing.
Managing expectations – it can take 6-12 weeks of exercising before noticing change, and it’s normal that we may experience setbacks or delays with our exercise. This may feel frustrating at times, but it could be useful reaching out for support from your health care or exercise specialists if you are feeling stuck or noticing that you experience a boom-and-bust pattern with your exercise.
Safety – when spending time in the water, always swim with friends, family, or in a supervised place and adhere to water safety guidelines. It is also recommended that general exercise be performed with safety precautions such as supervision, due to the nature of PoTS symptoms.
Thank you to Ruby Usiskin for producing these images. Subject to copyright by PoTS UK.
Share this page
This information is general information about PoTS and is not an alternative to medical advice from your doctor or other healthcare professional. You must always consult your doctor or healthcare professional.
Production date 01/10/2024
Next review 01/10/2027
Version 1