Managing Ehlers-Danlos Syndrome through Exercise

Estimated reading time: 7 minutes Have you been told to exercise to help manage your EDS or HSD? Perhaps you have been given no instruction on how to exercise with this condition. Or perhaps you’ve been told to just do pilates or go swimming. Or maybe you’ve been sent to a physical therapist who doesn’t understand hypermobility and makes things worse?

There are great EDS/HSD -aware PTs out there, but not enough! I am working closely with The Ehlers-Danlos Society on the EDS ECHO programs to train more physical therapists in the Integral Movement Method so that we can help more EDS patients with appropriate exercise guidance.  Exercise can be a source of fear or anxiety for many of us, but it does not have to be!

We all have dreams – it may be to be able to garden or play pain-free with our children. Or to sit at a desk for work without neck pain. I encourage everyone to hold that dream. With appropriate, regular exercise and movement education, you never know what’s possible. In my role as a movement therapist, I have the privilege to speak to many people every day living and learning to thrive despite having a chronic illness. We do have to make changes, but it’s not the end of the road. We just have to do things differently from before.

If we have been inactive for a while we may not be able to start right back up with the activities we once loved, but we can start somewhere.

 Safe exercise practices

A mistake that is so often made in prescribing exercise to hypermobile patients is jumping straight in with stability and strength work. With someone just starting, this can lead to the risk of overuse injury and strain. This in turn can create frustration and self-blame assuming that there must be something wrong with us or we are doing something wrong to cause injury. The boom-and-bust cycle can be harmful and discouraging.

I find we need to take some steps prior to getting to the strength and stability stage and that begins with breath and relaxation. The IMM is the first evidence-based method that brings a cohesive strategy together of how to progress a hypermobile patient safely starting with fundamental principles before we even think about stability work.

In one study on people with hEDS/HSD, participants were asked about the barriers they face with exercise. 87% reported pain, 79% reported fatigue, and 50% reported that a fear of injury prevented them from exercising (1). I think these should all be taken into account when approaching exercise.

I highly recommend we first find our baseline – what can we do safely without causing a flare-up? Once we find a baseline we can build up from there. This reduces, or ideally eliminates, the boom-and-bust cycle. It does not matter if that baseline is low. I often say to my clients and The Zebra Club members that we “start low, and go slow”. This is where we can find safety with movement and exercise. Slow progression with strengthening can also allow us to avoid irritating joints and surrounding tissues – it is thought that our muscles activate differently than the non-hypermobile population (2). This slow and steady progression can also prevent injuries from overuse and inflammatory responses (2).

I think it is important we do not compare ourselves to others or our ‘old’ selves. For sure, there will be a period of adjustment and acceptance. I find that once we find this mentality shift of not pushing and also still moving, things begin to improve. Focusing on one baby step at a time can take you a long way.

Benefits of exercise for hypermobility

It has been reported that when people with Ehlers-Danlos syndrome experience deconditioning, this can lead to more joint laxity which leads to more weakness, instability, and more pain – which continues as a cycle (3,4). We can break this cycle when we find a way to get back into movement and exercise without increasing pain. In fact – there are many ways that exercise or movement can help improve our quality of life beyond pain.

• Improve proprioception: Proprioception is the awareness of where we are in space. This is impaired in people with EDS (5). Multiple studies have shown we can improve proprioception with targeted exercises in EDS (4).
• Improve balance: Balance can be improved with targeted exercise (4)
• Reduce pain: Multiple studies have shown that exercise and rehab programs can help improve pain 4). I believe the approach to movement and the role of the nervous system in pain may be important in the success of exercise on pain relief.
  • Upregulation of the central nervous system is also implicated in our pain response (3). The Zebra Club scientific advisor Dr. Leslie Russek explains that small, slow, mid-range gentle movements can decrease sensitization.
• Improve stability: Maintaining muscle strength can reinforce joint stability (as well as reduce chronic widespread joint pain) (2)
• Better sleep: It has been suggested that exercise during the day is part of a sleep hygiene plan to promote better sleep, and may encourage wakefulness (6)
• Less fatigue: Muscle strengthening can decrease fatigue (2) – if we are more stable we use less energy in bracing to stabilize.
• Improve POTS and other forms of dysautonomia: Emily Rich, OT explains how in this blog post.

When working with ME/CFS, fatigue will be a factor. We need to find a way to gently increase activity and conditioning without inducing post-exertional malaise (PEM). We have a subgroup in The Zebra Club for people with energy-limiting conditions like ME/CFS and many of our members learn to move and improve pain with our classes.

Exercises to avoid with EDS

On my podcast, Finding Your Range, I’ve interviewed several people with EDS who use exercise to help manage their condition. It is essential for their mental and physical health. I’ve met climbers who live for the climbing wall, dancers who are guided by the music and body boarders who cannot wait to get out on the sea. A member of The Zebra Club online recently returned to figure skating after diligently completing my online videos three times a week for three years. That’s a commitment to a dream.

I find that when we start with breath and relaxation, and progress to proprioception, stability, balance, and posture – we find we can begin to do the things we once loved. When we have stability and control of our joints we can safely do exercise or sports that once might not have been as safe for us.

I’m never one to tell someone they should stop doing something they love. I believe there is always a way forward, even if we need to approach it differently. I’m not saying this would be easy – it requires determination, strength, commitment, and belief. I do believe that it does not matter where your starting point is today, there is always a way forward no matter how small the steps.  Its often not the exercise that’s wrong, but the approach to exercise that is wrong. We do need to work differently. I recently heard an EDS patient being told by a health professional they need to work harder than everyone else to achieve their dreams.   It’s not harder – that is going to cause more stress and tension. It’s differently, it’s smarter, it’s informed and it’s safe.

 It’s all about balance – rest when you need to

In my experience, yes kinesiophobia or fear of movement may lead to deconditioning. Sometimes, however, we can push too hard and our bodies MAKE us stop.

“Some people may avoid all physical exercise to prevent pain and fatigue, but this will promote physical deconditioning. Other people may persist in exercising despite pain and fatigue and stop only

when pain or fatigue are extreme. However, this may over time result in dramatically reduced

physical activity (7).”

As a recovering perfectionist (as I know many of us are), I have had to learn how to rest – and “rest proactively” a concept one of our lovely The Zebra Club members introduced me to. It doesn’t work when we push our bodies too far. Pacing and working within our energy windows is crucial when managing these conditions. This can help us manage, fatigue and pain and hopefully prevent crashing.

We have presentations in the resource center in The Zebra Club app from Occupation Therapist Jo Southall and Exercise Physiologist Emily Cochrane that dive deep into pacing strategies that are useful when managing hEDS/HSD and co.

 Criteria for choosing the best exercises

When evaluation whether an exercise program or type of exercise is right for me, here are some things I would ask myself

• Is it increasing pain? Being a little sore after doing an exercise is to be expected, but a big increase in pain is not.
• Am I being pushed past what feels safe for me? A good physio or movement professional will help you feel comfortable and listen to you. This is a non-negotiable for me.
• Can I do it with control and not hang off of my joints or hyperextend without control?
• Do I enjoy it? If I enjoy it, I’m more likely to create a habit and continue doing it.
• Is my breath being compromised by what I’m being asked to do? I always say you should be able to have a comfortable conversation with the person next to you while exercising safely with hypermobility. If you are breath-holding, that could cause more tension in the body.
• Am I progressing at a pace that suits my body? Everyone is different – there is not one set of rules to follow. It may not be a linear progression – we often have a couple of steps back and forth. That is OK too.
• Importantly – does it make sense? I believe in educating my clients and Zebra Club members on the why.  Why we are doing something, why something might be going wrong.  Find an exercise professional who is happy to take the time to explain the rationale to you.  Handing out a list of generic exercises that also get given to non-hypermobile patients probably isn’t the best way forward.

Here is a brief video on the “Less is more” approach to exercise:

Literature review and research by Catherine Nation, MSc, PhD

Works Cited

1. Simmonds et al (2019) Exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type. Disability and Rehabilitation.
2. Russek et al (2019) Recognizing and Effectively Managing Hypermobility-Related Conditions. Physical Therapy.
3. Scheper et al (2015) Chronic pain in hypermobility syndrome and Ehlers–Danlos syndrome (hypermobility type): it is a challenge. Journal of Pain Research.
4. Buryk-Iggers et al (2022) Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review. Archives of Rehabilitation Research and Clinical Translation.
5. Clayton et al (2015). Proprioceptive precision is impaired in Ehlers–Danlos syndrome. SpringerPlus.
6. Hakim et al (2017) Chronic Fatigue in Ehlers–Danlos Syndrome—Hypermobile Type. American Journal of Medical Genetics Part C (Seminars in Medical Genetics).
7. Geenen & Lumley (2018) Chapter 20: Stretched beyond the limit: Well-being and functioning in patients with Ehlers-Danlos syndrome and other hypermobility syndromes. Jacobs, J.W.G., Cornelissens, L.J.M., Veenhuizen, M.C., Hamel, B.C.J. (eds.), Ehlers Danlos syndrome, pp. 281 – 295