Hypermobility, reluctance to exercise and the bull in the field

[Note: in this I refer to hypermoblity syndromes. This is written from my perspective as someone with Joint hypermobility syndrome or Ehlers Danlos syndrome hypermobility type, (either hEDS or HSD under the 2017 criteria) but it is applicable to the joint related aspects of many hypermobility syndromes including other types of EDS, OI, marfan, pseudoxanthoma elasticum, and possibly for other long term conditions too.]

Many people with a hypermobility syndrome react with a level skepticism and reserved-ness when a health care professional (HCP) tells us we need to exercise more or that physio will help.

From experience, I'd hazard a guess that this is often seen by HCPs as:

• playing the patient role.
• unwilling to put in the effort.
• resistant to good advice.

So HCP input comes from that angle - which often creates little progress and lots of frustration.

The key to moving forward might simply be better communication and better understanding of the reasons for the less-than-convinced reaction.

It's worth noting that when the topic of physiotherapy comes up in patient support groups, most often someone who says "physio didn't help me, it made me worse" will go on to say "I swear by pilates/swimming/cycling". Exercise is something they have actively chosen to pursue. 'Playing the patient role' 'unwilling' 'resistant' etc just don't fit.

I treat each new professional I meet with extreme caution when it comes to exercise - even though I love exercise and am a dancer! I will try and explain why.

Imagine you are walking along a footpath through a field. Halfway through, you realise there's a bull in the field, and it's heading straight for you. At speed.
You leg it, and make it over the gate - a bit bruised and shaken, but OK.

Another day you reach the same field. You remember the bull. You look carefully. You can't see it. You reckon it should be OK, and you really want to reach your destination. So you follow the footpath again. Half way across the bull appears from its hiding place - this time you aren't so lucky and end up breaking your ankle as you leap the gate.

A few months later, mostly healed, you are on a walk with a friend who doesn't know your history, and who wants to show you an amazing place they've found. On the way you reach the bull field.

You say "I can't go through there, I'll get injured!."

Would you be reassured by insistence that you won't get injured? - No. How can they know that?
Would you be reassured by "It will be fine. Trust me" - No. It wasn't fine last time - you fell for that thought last time.
Would you be reassured by "I know lots of people like you who've been through with no problem"- No. Because your experience is that you have had problems - there was a bull hiding in the corner!
This type of 'reassurance' response just creates friction and frustration all round. A refusal to proceed based on logic and real life experience, butting heads with a dogmatic insistence that you have to. As a patient this makes you feel like you have 2 choices: knowingly risk injury/worsening symptoms in the forlorn hope that they might realise you were right and start listening; or stand your ground and have essential help withdrawn - there is no way to win.

But what if they said "What happened?" and then listened to your story?
What if they then said "Erk. That really sucks. I wonder if we can find a way through a neighboring field. Or we could go along near the fence so we have lots of time to hop over if the bull appears, or we could stand on the gatepost can see into the bull's hiding place"?

Putting this into an exercise context, replace the bull in the field with physiotherapy-induced worsening of symptoms, or exercise related injury. A reluctance to leap into whatever exercise is given is a sensible result of past experience. It demonstrates a wish to learn from past experience and not repeat the same mistakes.

HCP comments like "It will be fine." "Trust me, I know what I'm doing" are simply not helpful. How can you avoid a repeat when you don't know what the issue is? - and if your patient is anything like me, they will have had first hand experience of "it will be fine" promises going very pear-shaped.

The key to progress is talking about the past experience. Finding out what previously had a bad effect (and what worked) and coming up with possible solutions - together. And honing those solutions over time, using discussion rather than dictatorship, so that the patient becomes better equipped to make their own self management decisions in the future.

True, all the physiotherapists I've seen over the years have made mistakes at some point (given exercises that didn't help, or given unhelpful advice based on false assumptions) - but the good ones listened to me, learnt, and went on to make a real difference in my life - helped me learn to avoid, outwit and outmaneuver the bull in the field.

Bull avoidance tips:

• Use a joint support or taping during exercise - so struggling joints can be strengthened without injury/strain.
• Work to strengthen a specific struggling joint/group of joints before putting strain on others. (backing off from knees initially, and working on a stronger core, hips and butt in sitting and lying means I can now safely do more to strengthen my knees and ankles.)
• Try a different exercise that works the same muscles - perhaps in a different position. Like in lying instead of sitting, or kneeling instead of standing. 
• Double check the correct muscles are being used. Gentle pressure really helped me activate the right muscles and get around my poor proprioception issues. (I often found myself going through the motions of an exercise from one flop position to another flop position with minimal control - It was only when I realised that I had to control the whole movement that physiotherapy started to help me. 
• Address 'what if' concerns with plan B, C, D - and however many versions are needed. Even if one plan is 'you stop that exercise and send me an email/leave me a message/tell me at the next appointment.' - HCPs don't need to predict the future, they just need to respect my concerns as valid. I can afford to take more risks if I have 'emergency back-up plans' in place.
• 'Try this and see how you get on' is a great starting point (combined with alternative plans for if it doesn't work out well).  (In my early days I'd often go all out and force myself to reach physio targets despite the fatigue/pain - then injure myself doing something normal afterwards because I'd overdone it.) Using an exercise form like the one below gives a straightforward, clear way of communicating about any 'bulls' that are encountered, and empowers the patient to make decisions and adapt their exercise regime to work better for them, rather than feeling like they have a choice between forcing themselves into injury or giving up completely.

This form is available as a download and in printed form from our website

• Encourage stopping an exercise when it can't be done perfectly. I tend to push myself too far as I try to prove to the HCP that I'm trying. Exhausted flop might tick the 'reps' box, but it's not going to be of long term benefit - it sent me backwards.
• Look for ways to convert daily living stuff into exercise - that way we can use limited energy in a more constructive way. For example sitting on a wobble cushion for 5 minutes while on social media. Or squats or heel raises while brushing teeth.
• Have ideas of exercise/sports that might be accessible to people with, for example, limited mobility or fatigue - such as dance groups that are adaptable and genuinely inclusive (like 'dugout' in Oxford), seated exercise classes, swimming, wheelchair basketball, badminton, rock climbing, pilates with an adaptable and knowledgeable instructor, disability athletics clubs. And whatever else you can think of locally - remember, people don't have to be wheelchair users to benefit from wheelchair-based sports, especially when the non-wheelchair version is not possible for them.

In short, if we seem reluctant to exercise, please take the time to find out about the bull in the field, and then work with us, using our expertise in 'how my body reacts' to create a way forward.

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