Navigating life with Postural Orthostatic Tachycardia Syndrome (POTS), hypermobility, or Ehlers-Danlos Syndrome (EDS) presents unique challenges, especially in the realm of exercise. While exercise is important for overall health and is part of the rehabilitation process, the traditional approach to exercise may not always be suitable for individuals with chronic health conditions. Utilising a personalised approach that acknowledges and adapts to the individual is crucial to long-term success. In this blog, we will delve into how exercise can be personalised to your needs. We will also discuss how to understand and apply the Rate of Perceived Exertion (RPE) Scale to your activities to help find appropriate levels of exercise intensity.

Foundations for a Personalised Approach

Successfully managing POTS, hypermobility, and EDS through exercise incorporates cardiovascular exercise in combination with strength training. You may have heard of or been recommended to complete the Levine or Dallas/CHOP Protocols for POTS rehab; these protocols were adapted from the training methods used in POTS research studies. Based on research the gold standard is to do 3-4 days of cardio and 2 days of strength exercises. They typically are set out in the following phases:

3 phases of POTS exercise rehab

  • Phase 1 (1-3 months): Exercises with low orthostatic challenge such as recumbent cycling, rowing ergometer or swimming
  • Phase 2 (4-5 months): Introduces upright cardiovascular exercises such as stationary biking and graded walking, as your body starts to adapt.
  • Phase 3 (6 months and beyond): Further increases the challenge of upright exercise, including the elliptical machine and treadmill.

Fatigue, pain, and associated symptoms of ME/CFS (chronic fatigue syndrome), can be a barrier to even getting started and meeting the frequencies recommended. Fatigue is also the main reason for participant drop out in research studies.

Using the basis of these research protocols and considering your individual situation is how ‘Not Just Bendy’ can help you come up with a personalised exercise program that you can tolerate.

Making Exercise Work for You

Exercise is not one-size-fits-all, especially for those with chronic health conditions. Each person’s experience with POTS and hypermobility varies, and factors such as current symptoms, energy levels, and coexisting conditions must be considered when developing a program. What works for one person may not work for another.

Many people associate exercise with intense workouts that leave them feeling exhausted and out of breath. A big part of our education with clients is reframing this and understanding that exercise doesn’t have to be hard and exhausting to be beneficial. Even short bouts of light activity can have positive effects.

When energy levels and pain are a barrier to exercise, it’s essential to listen to your body and adjust your exercise routine accordingly. This may mean modifying the type, intensity, and duration of exercise based on how you’re feeling that day. Pacing, avoiding boom and bust cycles and consistency are key. Remember that progress may not always be linear, and it’s okay to experience setbacks. Life changes, increased stress or illness, may necessitate adjustments to your exercise routine. Having an adaptable program ensures that exercise remains a sustainable and enjoyable part of your lifestyle.

Below we will share two stories of client programs based on the above principals and how we at Not Just Bendy are able to tailor POTS rehabs to those with varying severities of POTS and symptomatic hypermobility/EDS.

Margret’s Story:

Margret* is in her mid-40’s and has both H-EDS and POTS. Margret works full-time and is a busy parent. She has been active all her life however always found cardiovascular exercise particularly challenging; her HR would get high very quickly and would feel faint and dizzy after an extended period. In recent years, Margret was diagnosed with POTS and takes a heart lowering medication for management. Currently, she attends a group exercise class 2-times a week to focus on global muscle strengthening and completes a small home program for joint-specific issues but did not find that her POTS and fatigue were improving.

As part of her program updated through Not Just Bendy she has included POTS specific cardiovascular exercises, and has now progressed to an upright, interval-based program. The base program is done on an upright bike with a 5-10mins warm up, followed by 5-rounds of 45sec higher intensity intervals and 2mins active rest, then finishing with a 5-10min warm up. Margret was taught to self-adjusts this program depending on how her body is feeling each day. Due to various external factors such as fatigue and stress she may is not able to tolerate a full 5-rounds of intervals, on those days she will do a shorter session. Margret’s gym can be quite warm and she is not always able to tolerate upright exercises, so she follows the same program on a recumbent bike. The current progression plan for Margret is to work on decreasing her rest periods with her interval training.  Margaret now feels more energised after the gym (instead of drained) and has spoons left to complete her daily tasks easily.

Charlotte’s Story:

On the other flipside we have Charlotte* who is in her late 20’s with generalised-joint hypermobility, ME/CFS and POTS. Charlotte has been unwell the past few years with pain and fatigue being major limiters to her day-to-day function. As such she was often bedbound and deconditioned when she first attended Not Just Bendy.

Her initial program and sessions involved education on symptom management and pacing. All her rehab exercises are down laying down focusing on improving joint stability and isometric strength exercises for the leg muscles. She has been working on slowly increasing her upright tolerance by increasing sitting time and take a walk around the house when able. Six months in, we have now been able to introduce gentle seated stationary pedal exercises working starting once a week for 5mins at a constant pace, low intensity, and building towards increasing her exercise duration. Charlotte has much improved tolerance for short walks around her home and has ventured to the local coffee shop with a friend in her wheelchair which has been a goal for a few years.

The RPE Scale Explained

The RPE scale ranges from 1 to 10. It provides a subjective rating of how intense an exercise feels. The scoring is completely individualised to each person and is variable over time. It is a simple measure that does not depend on other metrics such as speed, weight, or heart rate (which is not always reliable for those on heart rate-lowering medication for POTS). We can use this simple measure to adjust exercise intensities accordingly to your needs.

RPE scale

The RPE Scale:

  • 1-2: These levels indicate very light activity. You should be able to converse easily without any breathlessness.
  • 3-4: Activities falling into this category are considered moderate. You might notice your breathing rate increase, but you’re not out of breath.
  • 5-6: Here, you’re entering a zone that’s challenging yet still manageable. Conversation becomes harder, signalling increasing cardiovascular effort.
  • 7-10: These levels represent high to maximum effort. Speaking is very difficult due to the intensity of the exercise, indicating that you’re pushing the limits of your capacity. Activities in these zones are not intended to be sustained for long periods.

Applying RPE in Your Exercise Program

As mentioned earlier RPE is personalised and variable over time. It allows for day-to-day adjustments based on how you feel, ensuring that you’re exercising within an appropriate and beneficial intensity range for each given day.

  • Starting Low: Begin with exercises that are low on the RPE scale, particularly if you’re new to exercising. This might include activities like your rehab program, mobility exercises, gentle swimming or recumbent cycling.
  • Monitoring Progress: As you become more comfortable, gradually increase the intensity of workouts such gentle walking, upright cycling and progressed strength exercises to higher RPE ranges. As you become more aware of your body and how it responds to exercise, you can also use RPE to help keep your day-to-day activities within a range that does not cause further fatigue and pain flare ups-post.
  • Adjusting for Symptoms: On days where symptoms are more pronounced your RPE may not always be at ‘0’ when resting, on those days you may only have the capacity to increase you RPE a little during exercise a little or are better to rest instead.

Exercising with POTS – Tips for Success

6 tips for exercising with POTS

1. Avoid Exercising in the Heat – Exercising in hot conditions can worsen POTS symptoms.

2. Minimize Postural Changes – Plan workouts to limit the need for frequent changes in posture, reducing the strain on your cardiovascular system.

3. Hydration and Electrolytes – Consuming fluids and electrolytes 20-30 minutes before working out helps expand blood volume, potentially reducing exercise-induced symptoms. Keep hydrated throughout your session to maintain blood volume.

4. Medication Timing – Timing exercise with the peak effectiveness of your medication can improve exercise tolerance and reduce symptoms whilst exercising.

5. Food Timing – Avoid eating 2 hours before exercising to minimize gastrointestinal discomfort and reduce blood flow diversion to the intestines for digestion.

6. Pace Yourself – It’s crucial to progress at your own pace. Active recovery and rest are just as important as progression, ensuring that every step forward is sustainable.

Exercise, when appropriately tailored is a powerful tool for those living with POTS, hypermobility, and EDS. Your body’s responses, your progression pace, and your collaboration with your practitioner are the foundations to a successful program. Each person will progress through each ‘Phase’ at their own pace. By utilising a personalised approach to exercise, “Not Just Bendy Hypermobility Services” is committed to supporting you every step of the way in your journey.

Referral to Our Exercise Physiologist and Physiotherapists for POTS management

If you’re looking for personalized support and guidance in managing POTS, hypermobility, or EDS through exercise, our in-house exercise physiologist, Avery, is here to help. Avery specialises in creating tailored exercise programs that cater to your unique needs and health conditions. Additionally, we have a team of skilled physiotherapists who are experienced in working with individuals with hypermobility and EDS. To learn more about our services or to schedule a consultation, please visit our website and explore our team of professionals. Let us support you on your hypermobility journey.

Exercise Physiologist of NJB - Avery Wu


Postural Orthostatic Tachycardia Syndrome

Our blog today will focus on one of the most commonly co-occuring issues with symptomatic hypermobility –Postural Orthostatic Tachycardia Syndrome (POTS).  POTS (which is a type of dysautonomia) is currently getting increased research attention as it is thought it is being responsible for many symptoms of long COVID.
The extra give in ligaments in hypermobility, is believed to be due to a higher proportion of a stretchier type of normal collagen.  Collagen is present in connective tissues throughout the body.  Therefore, it is possible to have associated problems associated with hypermobility including gut issues, fatigue and dizziness. 
In the literature, it is suggested that with those who live with Hypermobile -Ehlers Danlos Syndrome the incidence of POTS is reported as high as 88%.   POTS symptoms most commonly are reported as fatigue, dizziness, brain fog, racing heart and palpitations.  But POTS symptoms can include any combination of the following:


Everyone with POTS has a different combination of symptoms and these symptoms can be explained by many other issues so it is important individuals discuss with their GP for assessment and evaluation of any underlying conditions and for accurate diagnosis.

Understanding POTS

To understand what POTS is we need to have a look at how the body maintains it body processes as you move around.  The body has many processes that it controls automatically (without any conscious thought or thought from your brain).  Homeostasis, is the self-regulating process by which biological systems tend to maintain stability while adjusting to conditions that are optimal for survival.  The body aims to maintain homeostasis and maintaining the blood pressure at a normal level is essential for this.

Blood pressure can be affected by how fast your heart beats (heart rate) and blood going into your heart (venous return) as shown in the formula below. 

Blood pressure = Heart Rate x Venous Return.

When lying down, your body can relax and pump blood around with minimal effort.  Once the body changes quickly from lying to sitting or standing (like when getting out of bed in the morning) blood can pool (stay) in the legs and arms.  This means there is less blood for the heart to pump around.  If your blood pressure drops too quickly you would faint (vasovagal syncope), so to make sure your blood pressure does not drop, your body releases hormones (adrenalin) to increase your heart rate to increase blood pressure.

In people with hypermobility spectrum disorder or hypermobile -Ehlers Danlos syndrome, just like their joints, their blood vessels have extra stretch which means more blood can pool in the legs when they stand up. With less blood available (less blood returning to the heart because it is pooling in the legs) the body increases the heart rate to avoid dropping the blood pressure which in extreme circumstance could cause fainting.

To increase the heart rate the body makes the heart beat faster via activation of the Sympathetic Nervous System ($NS) which is also known as the fight-flight system (SNS).  As well as increasing the heart rate there are a raft of associated symptoms associated with this which can account for many of the symptoms listed in the table above.

For adults to be considered with POTS, the heart rate needs to go up by >30 bpm from lying to standing still. Additionally, if your heart rate when laying still is more than 120bpm, this can also indicate POTS. For children, the heart rate needs to be >40bpm

You can do testing for POTS and other dysautonomia in your own home.  Your physiotherapist can supply you with more detailed documentation on how to record this.  

Common investigations include; blood tests, ECG, heart echo, Holter monitor of blood pressure and/or heart rate, tilt table testing and cardiologist assessment.  Tilt table testing is not always necessary and the nasa lean test can be easily completed without fancy equipment.

What can I do to help my POTS symptoms?

  • Increase fluid intake – More than 2L/ day or 8-10 cups/day (must be in combination with extra salt intake). Extra fluid means extra blood!


  • Increase salt intake – Without salt, all that extra fluid will not stay in your body. If you have a family/personal history of high blood pressure, heat or kidney diseases or concerned about risk factors of salt intake, please discuss this with your doctor.


  • Compression garments– prevent blood pooling in the legs. There are many options like sports socks/ TEDS, Skins or cheaper alternatives from Aldi/ Target. Full tights or bike pants options available.


  • Resting in positions to improve symptoms for short periods – sitting with knees bent up can encourage blood flow to return to the heart and decrease symptoms of POTS. Lying can also relieve POTS symptoms but too much rest can add to de-conditioning which can worsen POTS symptoms in the long term.


  • Exercise
    • Exercises you can do lying or sitting can be easier than standing.
    • Pumping/wiggling feet and legs can help pump blood back to your heart.
    • Try not to stand in the one spot – wriggle and move your position from side to side.
    • Cardiovascular exercise can improve symptoms in many people with POTS but they need to be paced and appropriate to avoid flare up of fatigue or painful symptoms.
    • Not Just Bendy Hypermobility Services Physiotherapists can help you develop an exercise program that is tailored to you.


  • Medications
    • You can discuss with your GP or cardiac specialist which medications may help
    • If your symptoms are affecting your ability to function then it is worth considering review by an electrophysiological cardiologist.


Brock, I., Chopra, P., Maitland, A., & Francomano, C. (2021). Frequency and co-occurrence of comorbidities in the Ehlers-Danlos syndromes. Molecular Genetics and Metabolism 132S1, S59-S198.

Raj SR. Postural tachycardia syndrome (POTS). Circulation. 2013 Jun 11;127(23):2336-42.

Hakim A, O’Callaghan C, De Wandele I,  Stiles L, Pocinki A and Rowe P (2017) Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—Hypermobile type  American Journal of Medical Genetics Part C: Seminars in Medical Genetics 175C: 168 -174