Exercise and movement for adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders

Jason Parry, Extended Scope Physiotherapist / Clinical Specialist Physiotherapist, University College London Hospital and The Hypermobility Unit, Hospital of St John and St Elizabeth, London

Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.

People are always talking about the importance of exercise. Hardly a week goes by without some expert or other popping up on the news telling us what’s best for our lifestyle and to “get more exercise”. Every time you go to see your GP, I bet they keep mentioning exercise as well; and if you ever go and see a physiotherapist you can be certain that they will be advocating the virtues of exercise. All of this preaching of exercise and a healthy lifestyle is typically aimed at the entire population, but sometimes reserved in particular for certain sections of society where the benefits are said to be greatest.

Unsurprisingly, the evidence advocating the benefits of exercise and movement is positively overwhelming. In fact, if exercise could be wrapped up in a tablet, it would be the most widely prescribed drug in the world! So what are some of these benefits? Prevention and management of the following conditions for a start:

  • Diabetes
  • High blood pressure
  • High cholesterol
  • Heart disease
  • Obesity
  • Osteoporosis
  • Arthritis
  • Depression and anxiety

These are some of the most common health conditions affecting society and account for a huge proportion of GP/hospital visits and even deaths each year, and just because you happen to have hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) it does not preclude you from developing any of the above conditions as well. You can’t prevent yourself from having hEDS/HSD, but you can help prevent yourself developing those conditions listed above, so already you’re winning with exercise.

And there are other benefits to exercise too! For instance:

  • Feeling more confident about moving
  • Improving the flexibility of stiff parts of the body
  • Allowing you to resume activities
  • Improving stamina
  • Improving the body’s muscle endurance
  • Stress and tension release
  • Losing weight and increasing muscle tone
  • Improving fitness levels
  • Improving self-esteem

So we’ve established that exercise is beneficial, but how can you exercise with hEDS/HSD? This is one of the most common questions among hypermobile patients. They report various difficulties related to exercise – unstable joints, chronic pain, postural tachycardia syndrome (PoTS) getting in the way, limiting gastric symptoms and of course fatigue. Well, exercise (and movement in general) actually forms one of the mainstays of managing hEDS/HSD and can offer you the capacity to hopefully improve your functional ability, allowing you to achieve more goals in life.

It isn’t always easy and there is a whole spectrum of ability when it comes to hEDS/HSD and physical status ranging from mild to very severe, but everybody, yes everybody, can benefit from exercise and movement. You just need to know what type is suitable for you and how to go about it, which leads us to the next most common questions that get asked – “What exercise is safe for me to do?”, “Are there any exercises that I should avoid?”, “How can I avoid deconditioning?”, “Should I do stretches?”, “How much exercise should I do?” and “Can I exercise at home without having to go to the gym?” All valid questions and ones that will hopefully be addressed within this article. But before we go on to do so, there are some important things to mention.

Firstly, you should always ensure that you are initially cleared to be able to exercise by any medical practitioner whose care you may be under (cardiologist, gastroenterologist, rheumatologist, GP, etc) prior to undertaking any form of exercise programme. Secondly, everyone is an individual and hEDS/HSD affects everyone in different ways. There is no substitute, therefore, for an individual assessment in order to determine the most appropriate exercise regime for you to follow. This should ideally be done by a fully-trained healthcare professional (chartered physiotherapist) who will then also be able to monitor and adapt the exercises accordingly. It would be impossible to provide an exhaustive list of exercises suitable for everybody in an article like this as each of you will have different needs and physical issues. With that in mind, there are some generic principles applicable to everyone that can be followed when it comes to exercising.

To begin with, let us look in turn at the different types of exercise components that exist. There are four key types:

  1. Aerobic
  2. Strength
  3. Flexibility
  4. Proprioception/balance

 

Aerobic exercise

Otherwise known as cardiorespiratory or cardiovascular exercise. This is the exercise that gets the heart and lungs pumping and transfers oxygen to the muscles. We generally achieve this form of exercise by means of activities such as walking, use of treadmills, use of exercise bikes, using cross-trainers and swimming to name but a few. The recommended amount in the ‘normal’ population is 150 minutes of moderate intensity per week, broken down into five 30 minute sessions across the week. Although this may sound a lot, each 30 minutes can be broken down again into three 10 minute chunks per day, or even six 5 minute chunks if you so wish. What is moderate intensity? As a guide, there is something called the ‘Talk Test’ whereby if you are doing moderate intensity activity, you should be able to talk but not sing during the activity.

This may be achievable for some of you, in which case go for it! However many of you may well find the above difficult to achieve as a starting point. Pushing too hard too early may result in a flare up. How can it be made easier, or done at home? Well, as stated above, if able then walking is a great way to achieve aerobic exercise. Going up and down stairs if you can is another way. What if you find walking difficult? Swimming may be an option. You can either swim or simply walk around in the pool. No access to a local pool? Try buying a small set of free-standing pedals and ‘cycle’ at home, this may be very useful if you have PoTS or are very deconditioned. No need for a full exercise bike. If you find pedalling difficult, then you can place the pedals on a table and use them as a hand-bike. Even household activities such as cleaning and gardening can be a form of cardiovascular exercise. Don’t worry as well if you can’t achieve 30 minutes per day. All exercise should be paced and you should always start with a small manageable ‘baseline’ amount that you are able to do without really flaring-up your symptoms. Start with low-intensity exercise for 5-10 minutes two to three times per week. That’s fine. Do what you can manage. It can always be built up, but doing something is better than doing nothing. Ironically cardio exercise can be a great way of helping to beat fatigue, as although it may seem like it expends all of your energy, over time your energy capacity should increase as you become fitter.

 

Strength exercise

This form of exercise enhances muscles, ligaments, tendons and bones. Being stronger reduces the risk of injuries and provides additional support to your joints. Having strength offers you greater capacity to undertake physical and functional tasks. Strengthening can be achieved at home (or in the gym) in the following way:

  • Use some form of load (resistance bands, dumbells, body weight – you can even use gravity). Some examples might include strengthening your legs simply by doing sit-to-stands from a chair, or loop a resistance band around the back leg of a chair that you are sitting on, pull it forward and place your foot in it, then straighten out your knee. Strengthen arms by doing bicep curls holding a tin of beans or a carrier bag with stuff in it. Strengthen shoulders by holding a small dumbbell in your hands and raising your arms out to the side (be careful if you are prone to subluxations/dislocations).
  • As mentioned earlier, begin by working out a baseline number of repetitions (reps) per exercise that you feel you can manage without flaring-up your pain (start low) – and use a paced approach (though your pain may be there all the time, we want to avoid anything that really ramps it up and makes it even worse).
  • Pilates – basic level mat-work exercises modified for a clinical population can be excellent for building core strength, for proprioception and body awareness, and is also thought to help with motor control. Avoid higher level traditional Pilates exercises that can be excessively difficult and can put undue stresses on the body. If doing a Pilates class, then inform the instructor about your condition first. A good instructor should then be able to modify the exercises so that they are appropriate for you. If trying Pilates at home, then make sure you pick a beginner’s level DVD to work from. An example may include ‘Standing Pilates DVD – Beginner’ available from the APPI http://www.appihealthgroup.com/product/NEW-Standing-Pilates-DVD—Beginner/360 (Pilates DVDs from other suppliers are available).
  • Movements must be done with control.
  • Make sure that the correct muscles are working (this is where the advice of a physiotherapist can be especially useful).

 

Flexibility

Despite being hypermobile, parts of you can still get stiff. Stiffness can be a common complaint. Global muscles can often overwork and get tired, causing ache and muscle spasm. Stiffness can occur through pain and disuse, so maintaining flexibility can be beneficial. Parts of our body can often stiffen up if we maintain static (and poor) postures for long periods of the day. Think how long you sit, stand or lie in one position throughout the day. This is why it is important to change position regularly. Doing gentle stretches (or ‘mindful movement’ – a form of gentle controlled movements) can also help address the stiffness that can develop. Yoga can be useful too, but find a good teacher and please take care not to overstretch into hyperextended positions. Try to remember that “just because it goes there doesn’t mean you should take it there”! Commonly, it can be difficult to know where “there” is. It can be difficult to know at which point to stop the stretch. That’s where the next bit comes in – proprioception and balance.

 

Proprioception / balance

Proprioception is the body’s ability to sense position and movement within joints. It enables us to know where our limbs are ‘in space’ without us looking. It relates to coordination. Impaired joint position sense can cause joints to slip out of place. In general the better your proprioception, the better your stability. How can we train this at home? There are a number of different ways, but again without an official assessment what you choose to do depends very much on your own perceived ability to manage the exercise. Most importantly you should choose an appropriate level for you and ensure a safe environment when doing it. That said, some ideas could include:

  • T’ai Chi – an excellent form of exercise, comprised of slow, controlled movements. Good for balance and stability. Chi Gung is also advocated.
  • Standing balance exercises – these can range from standing with feet together, trying this with eyes closed, single leg standing or standing on a wobble board. You could try throwing and catching a ball whilst standing on a wobble board or even try mini squats if you’re really brave.
  • Wii Fit – if you have one of these, they can be a fun way of training balance and stability. There are a variety of different games that can be incorporated into using the Wii Fit board.
  • Gym ball – a brilliant and versatile piece of home exercise equipment. Try sitting on the ball in a good posture. If able, try this with your eyes closed. Progress to sitting with your feet close together. If able, try straightening out one knee and lifting your foot off the floor, maybe try that with your eyes closed if you’re feeling really brave.

As already mentioned, when doing any form of balance/proprioception type of exercise you MUST ensure a safe environment (exercise on a mat, place chairs either side of you or stand close to a wall), as well as pick an exercise that is at a suitable level for you, i.e. challenging but not impossibly difficult.

Exercise doesn’t have to be a chore, it can be fun. Prepare yourself a nice environment in which to exercise. Play some music or spray the room with nice smells (avoiding the smell of hard exercise!) Exercise with friends or family for added motivation. You don’t have to be a gym member to get the benefits of exercise and movement. As outlined above, there are lots of exercises you can do at home, standing or sitting. Just as an additional note though, it is generally advisable to avoid high impact and/or contact sports (for the more adventurous of you). Focus instead on low to moderate impact aerobic activity and low load strengthening and proprioceptive training.

Although the best way to develop and follow an exercise programme is under the supervision of a physiotherapist who will carefully assess your specific needs and be able to monitor and adjust your progress, it is still possible, and to be honest important, to maintain some level of movement and simple exercises yourself at home.

We can see, therefore, the importance of movement and gradual exercise for so many reasons in the hypermobile population. It can help with the pain from stiffness and deconditioning. Exercise can also give you more energy to help with fatigue. It can help improve your overall stability, reduce the risk of injury and reduce the frequency of dislocations. For those of you that may suffer from PoTS, exercise can also help reduce its symptoms (just make sure you replace lost salt afterwards through electrolyte drinks or salt tablets with water). Exercise can help release endorphins and encephalins, the feel-good hormones within us, aiding mood management; and ‘mindful movement’ can help take the fear out of moving and using our bodies. Exercise enhances general health and wellbeing. Try not to think about doing exercise for exercise’s sake, think of it as a means to you being able to achieve more meaningful things in your life. Exercise really is the best medicine.

Peer reviewed by: Dr Jane Simmonds, Senior Teaching Fellow, Great Ormond Street Institute of Child Health, UCLH and Specialist Physiotherapist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London

Date of last review: 01/12/2017

Date of next review: 01/12/2020

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