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6 Things I wish I’d known about exercise and hypermobility - a patient's perspective

Updated: May 23

I have a hypermobility syndrome (probably hypermobility Ehlers Danlos syndrome). The Hypermobility Syndromes Association’s (HMSA) topic for the month is Exercise. So, I thought I'd write this blog that I have been thinking about for ages.

I've seen loads of physiotherapists and been told in many different ways that I need to exercise. Which is true, but also not helpful. It took me a long time to discover these little nuggets, which made 'exercise' both possible and helpful for me - I share them in case they help you too:

1. Housework can count as exercise. But only if it's done with poise and control. Not if it is in 'desperate flop', or 'zombie on adrenaline' modes.

2. Exercise doesn't have to include running and sports and currently impossible things. Actually, exercise can be almost any movement done with control and poise. Things like sitting up with the core muscles engaged for a few minutes at a time was a great starting point for me. Or brushing my teeth while standing with my weight properly distributed across both feet, and my butt muscles engaged. Also, I love sitting on my gym ball! Little and often, with a focus on my posture was key for me.

3. Focusing on doing a physio exercise perfectly - and stopping when I can't control it properly, is far more effective for me than pushing to try and finish the reps, and then being unable to function.

4. 'Pain' has different meanings for different people. For some physio's it can include 'that achy feeling when you use your muscles'. For me it meant 'uh oh, this hurts in ways that are not good and can last for days or an indicate injury' - muscle ache was classed as 'whoop! I must be doing it right!'. I now know not just to say ‘it hurts’ but to be more specific.

5. 'Push yourself' doesn't mean 'keep going until you are so exhausted you cannot function for a month, or are in screaming agony for days, or collapse.' Even though it sounds like exactly that. It means 'keep going until you are at the limit of your comfortable - and start building slowly from there.' (You would not believe how long it took me to figure this one out!)

6. 'Do these exercises' is the start of a process - not a statement that means the inability to complete them equals total failure. When the physiotherapist says, 'do these exercises' it sounds like they mean 'do them or I will brand you as not trying hard enough, and not wanting to improve, and spend the next lesson lecturing you so you feel really disheartened and not listened to.' Actually, they often really mean 'try these exercises as a starting point and let’s see how you react; we can then adjust them to find out what works for you.'

In trying to work out how to get past a physio's fear of me giving up, I came up with this form:

You can download it here:

Problematic Exercises form download
Download PDF • 98KB

If I can't do what I've been asked, or it leaves me unable to function for days, or worsens the pain for days, then I write the exercise down, how many reps/how long I did it for, and what the effect was. Then (once I've recovered) I try again - but with fewer reps/shorter time/variation of the exercise and record what I did - and the effect. I keep tweaking the time until I find a level that means I recover within an hour and have acceptable side effects. Then at my next appointment, my 'I can't', turns into, 'I've put a lot of time and effort in and look what I've discovered I can do!'

These 6 realisations have been a huge help for me: I have learned to use my body in better ways, and built strength and stamina, and I can manage my pain a lot better than previously (no, it's not a cure, but it really has helped). Hopefully reading this will help someone else too. Whether it is helping someone with a hypermobility syndrome (or another condition that causes long term pain and requires tailored exercise) get the best out of their physiotherapy - or helping a physiotherapist to understand their patient.

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