What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of genetic connective tissue disorders characterised by joint hypermobility, skin hyperextensibility, and tissue fragility. These symptoms result from defects in collagen, a protein that provides structure and strength to the skin, joints, and blood vessel walls. There are several types of EDS, each with varying symptoms and severity, but all can impact physical activity.

It doesn't matter if you don't know which type of EDS you have (many of us don't, as genetic testing is not offered as standard) - it's most important that you listen to your body and work with your own unique set of symptoms. No two zebras are the same!

Common Symptoms and Challenges

For fitness enthusiasts with EDS, some common symptoms can pose unique challenges. These are some I and others in the EDS Athletes community also report:

  • Joint hypermobility: While flexibility can be advantageous in some sports, excessive joint movement increases the risk of dislocations and injuries. This means that some activities are more risky than others for folks with EDS, and we might need more support to notice if we're putting our joints at risk as we may not notice ourselves due to a lack of proprioception

  • Chronic pain: Many individuals with EDS experience persistent pain, which can interfere with regular exercise routines.

  • Fatigue: EDS often leads to increased fatigue, making it difficult to maintain energy levels during workouts.

  • Skin fragility: Delicate skin may bruise or tear easily, requiring additional precautions during physical activity.

  • Nutrition: Some people with EDS can also have problems with getting the right nutrition due to gastro-intestinal problems, which can impact ability to exercise.

The Importance of Staying Active

Despite these challenges, staying active is essential for individuals with EDS. Regular exercise can help:

  • Improve muscle strength: Strengthening muscles around joints can provide better support and reduce the risk of dislocations.

  • Enhance joint stability: Exercises that focus on stability can help manage hypermobility.

  • Boost cardiovascular health: Aerobic activities improve heart health and increase overall endurance.

  • Manage pain and fatigue: Physical activity releases endorphins, which can help alleviate pain and improve mood.

  • Support positive mental states: Being able to incorporate some physical activity can enable people with EDS to feel more in control of their body.

Precautions for Exercising with EDS

When embarking on a fitness journey with EDS, it's important to take certain precautions:

  • Consult with healthcare professionals: Before starting any new exercise program, consult with a doctor or physical therapist familiar with EDS to tailor a plan to your specific needs.

  • Start with low-impact, low intensity exercises: Activities like swimming, cycling, body-weight exercises and yoga are generally safer options to start with, which minimise stress on the joints and allow your body to gradually get used to regular physical activity.

  • Listen to your body: Pay attention to pain signals and avoid pushing through discomfort, which can lead to injury. Every person has different symptoms, don't fall into the trap of thinking that if another EDS'er (or even some other random person at the gym) can do something, you should be able to as well.

  • Incorporate rest days: Allow ample recovery time between workouts to prevent fatigue and overuse injuries. When you're starting out, this might mean only training once or twice a week. Be realistic with your expectations, and remember that with EDS we often don't get muscle soreness until 2-3 days after we train.

Conclusion

Understanding Ehlers-Danlos Syndrome is the first step in crafting a fitness routine that works for you. By staying informed and taking the necessary precautions, you can enjoy the benefits of an active lifestyle while effectively managing your condition. At Training with EDS, we're here to support you on your journey to health and wellness. Stay tuned for more tips and resources designed specifically for the EDS community.

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Ruth Cheesley
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