Assessing Your Fitness Level

Before diving into any fitness program, it's crucial to assess your current fitness level and understand your body's capabilities and limitations. Consider the following steps:

  • Speak with a doctor, consultant or physiotherapist who understands your unique presentation of EDS to evaluate your physical condition and identify any specific concerns. You should explain to them that you want to start being physically active, and ask what things you should consider or be aware of and what areas could help to improve your experience of living with EDS.

  • Consider whether you can work with a trainer 1:1 - at least to get you started for the first few weeks. This really helps you to develop confidence in yourself and your capabilities, and also means you have someone on hand who can help you to tweak any exercises which you might need to modify.

  • Set your own goals - what do you hope to achieve through exercise? I recommend setting some 'pie in the sky' goals (mine was to run a 5km race, which felt totally impossible when I started out!) alongside some short term goals which you are confident you can achieve with consistent work. Whether it's improving arm and shoulder strength so you can put the shopping away on your own, taking better care of your hypermobile joints so that you can reduce your pain, or enhancing cardiovascular health so you can do more activity during the day - it's up to you. Set something specific, like wanting to walk a mile without stopping, walking or running a Parkrun, lifting a specific weight, etc. so that you can mark when you achieve it with a celebration! More on goal setting later.

  • Know your limitations. We all wish we didn't have them, but we do. Be aware of any joint instability, pain triggers, or fatigue levels that may impact your ability to exercise. Watch out for the early warning signs, and allow yourself permission to stop when you notice them.  Our limits do change as we get more used to exercise and even in the course of a day, so it's important to learn to know where we're at, and be cautious with pushing ourselves close to our limits to avoid flare ups and injuries.

Setting Realistic Goals

Setting achievable goals is key to maintaining motivation and tracking progress. Here’s how to establish realistic objectives:

  • Start small - begin with manageable goals, such as exercising for 15-20 minutes a day, and gradually increase duration and intensity. For me, I started with a 45 minute PT session twice a week, where the exercising sections were limited to 5-10 minute chunks. It felt like I spent more time doing nothing and chatting than exercising, but that's what my body needed at the time and I wasn't able to push it further for a good few months.

  • Focus on functionality by prioritising exercises that improve daily functioning and quality of life. Struggle to get up from a chair? Focus on sit-to-stand from a bench. Want to get better at lifting your kids up in the air? Work on strength with weight in the front of your body. Wish you could walk to the corner shop and back with your shopping? Focus on leg strength, balance, and walking carrying weights.

  • Set specific, measurable targets instead of vague goals like 'get stronger,' aim for specific achievements, such as 'perform 10 consecutive sit to stands with proper form.'

Choosing the right exercises

Selecting the right types of exercises is essential for managing EDS symptoms while minimising injury risk. Consider incorporating:

  • Low-impact, low-intensity cardiovascular activities such as swimming, cycling, and walking. These are excellent options that enhance cardiovascular health without overstraining joints, and they also allow you to gradually build up the volume and intensity. Consider whether there might be a local group you could join to help you get started, they often have provision for supporting people with disabilities and newcomers, and it's often much more fun with others!

  • Strength training - start with bodyweight exercises and resistance bands before you add weights. Target major muscle groups at the beginning to support joint stability - using fixed-weight machines at the gym can be very helpful for this, as it doesn't require the smaller accessory muscles (which are often quite weak with very reduced stamina in EDS folks) to stabilise your joints through the range of movement quite so much as free weights do.  Don't be afraid to ask someone to show you how to do a specific movement or use a machine, and always start with light weights. You can always get heavier, but going too heavy from the start is a sure way to get injured.

  • Flexibility and balance work - now is not the time to abandon all those balance exercises you've inevitably been given over the years by your physiotherapists - in fact, balance and proprioception are very important as you start to become more physically active. Time to dust off those exercise sheets!  Yoga and Pilates can also improve flexibility and balance, helping to manage hypermobility and prevent falls, however it's important that you find a teacher who has a good understanding of caring for the hypermobile body and has a class size small enough which means that they can give you close enough attention to ensure you are maintaining good form.

Monitoring Progress and modifying

Regularly monitoring your progress and making necessary adjustments is vital for long-term success. You will often find that you have to tweak or modify exercises - and sometimes entire training plans - when things happen in your life or you have a problem with your body that means you can't train as usual. All is not lost! Here’s how to stay on track:

  •  Keeping a fitness journal can be really helpful and motivating. Record your workouts, noting how you feel before, during, and after exercise. This can help identify patterns and areas for improvement. It can also be motivating to look back at your previous efforts and see how far you've come! You can use pen and paper, but there are various digital tools you can use for this. I use Training Peaks for race-specific training, and JEFit for keeping track of my weightlifting progress. 

  • Am I still enjoying this is probably the most important thing to ask yourself. Maybe there are new exercises you could incorporate or perhaps you need to tweak what you're doing to stay motivated. Perhaps buddying up with someone might make a difference, or changing up your playlist to something you really love. Remember, not every workout will be plain sailing and fun (we all have to work hard sometimes!), but generally speaking you should enjoy your training, rather than dread it.

  • Evaluate and adjust both your training and your goals by periodically reassessing your fitness plan with your trainer (if you have one) and your healthcare provider.  Make tweaks based on your progress and any new symptoms or injuries you're working with (check out our post about how to cross-train if you're carrying an injury). Don't be afraid to ask for help - for example if you've picked up an injury and can't figure out how to modify your training, it's well worth having a couple of sessions with a personal trainer to figure it out.

  •  Be sure to acknowledge and celebrate your achievements, no matter how small, to stay motivated and positive. Our community is a great place to do this!

Conclusion

Creating a personalised fitness plan is a powerful step towards managing Ehlers-Danlos Syndrome and enhancing your quality of life. By assessing your fitness level, setting realistic goals, choosing appropriate exercises, and regularly monitoring your progress, you can build a routine that supports your health and wellbeing.

At Training with EDS, we're committed to providing resources and support to help you thrive on your fitness journey. Stay connected for more tips and insights tailored to the EDS community.

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Ruth Cheesley
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