As May is EDS Awareness Month, I decided to do what I have never really done before – I signed up for a conference to learn a little more about EDS. EDS UK hosted the medical team from the Royal National Orthopaedic Hospital at Stanmore to present a day symposium on “Managing Your EDS” – a perfect opportunity for me to learn more about this condition I have. The team at Stanmore are the main experts in the UK with regard to Ehlers Danlos Syndrome.
Back in 2007 when I received my diagnosis of EDS, my doctor (who is also based out of the RNOH Stanmore) had rather simple and practical advice for me – EDS was what I had, but what was more important was to manage any issues I developed as and when they arrive. In the meantime, he said I should stay active and healthy, and that a good lifestyle would take me a long way.
With this in mind, I was curious what I would learn…
A conference summarised in two words – Be Active
The conference itself was in many ways a validation of the advice I received in 2007 – time and again the presenters went back to one key message – that the best way to manage EDS and joint hypermobility is through a consistent and dedicated exercise regime. Be it closed chain exercises to improve balance and proprioception. Or exercises designed to get stronger. Or core work, posture and muscle control. In whatever form you exercise, the important thing was to improve the way you move, and to move and use your body as much as you can.
There was a recognition that in order to become active, people with hypermobility need to challenge the fear-avoidance cycle that arises from having injury and pain.
The doctors suggesting seeking help and support to do this – reaching out to psychologists especially. This was really interesting to me, as we often hear about the way top athletes turn to psychologists to become the best in the world. But how often do we hear about using psychology and counselling to simply get active, and to help those with chronic conditions take the first hardest steps to become active and improve the quality of their lives?
There were a lot of other interesting nuggets I walked away with…
1. Beware of collecting labels
What I found fascinating is that all of the doctors who presented echoed one major theme – that EDS patients more than any other subgroup of patients they treat are determined to LEARN about their condition.
And this particular quote struck me:
“EDS is underdiagnosed in the medical community, but overdiagnosed in the patient community.”
They cautioned about this – and warned about the danger of over-medicalising one’s life. They recommended that instead of attributing everything to EDS, that it would be better for us patients to deal with issues as and when the issues arise. To deal with what you have going wrong AT THAT MOMENT rather than worrying about what might go wrong in the future. To avoid falling into the trap of becoming a “label collector” and instead to just focus on what you can manage – YOU.
2. There is no gold standard test for EDS hypermobility
Associated with the warning against collecting labels, the doctors were also keen to point out that there is not a sure-fire test at the moment for the hypermobility types of EDS. That right now it is a mixed bag of issues under the label of one “syndrome”. Another warming – since there’s not even a test, why get caught up in labels?
3. There is a danger of developing a dependency culture
Apparently the more that patients seek to tie together their symptoms with EDS and to seek out treatments, the more they sacrifice self management in favour of treatments which they can receive from professionals.
Each doctor stressed the importance of looking at the actual problems, finding ways to manage the problems, and then self managing.
An example used which I found really interesting was reliance on massage professionals to bring relief from muscle and joint pain. As an alternative to massage or acupuncture, the doctors instead promoted investing in self massage tools to enable patients to become more self-reliant.
4. Health is more than exercise and diet
Hand in hand with self management, the presenters also emphasised the often overlooked components of a healthy lifestyle: pacing and sleep.
There was a great presentation about tracking what you do to find out how this impacts overall feelings of fatigue and well being, and then using the patterns you find to set up a more manageable schedule. I do this as a part of my triathlon training – but I can see that it would be extremely useful to take a similar approach to LIFE. To amass more evidence about what I do in order to learn how much is too much, so that I can better plan my time and schedule.
5. Know the good stuff and know what is the lunatic fringe
One big red flag was raised at the conference – beware the lunatic fringe.
With our online communities and the all-mighty Google’s powerful algorithms, we have access to so much information and so much experience to tap into… But the red flag? So much of it nothing more than heresay or speculation. Dr Cohen in particular advised to pay close attention to what is proven and what is speculation. To know what is “trendy” compared with what is “truth”.
For example – the trendy: gluten free eating; low histamine diets; mast cell activation disorder; genetics; chiari-0 and EDS hypermobility. The truth: exercise is beneficial in managing the symptoms of hypermobility and in improving one’s quality of life.
6. If it is positive for you, do it
As a closing remark, the team from Stanmore asked that we all be the masters of our own conditions. That really resonated with me.
They recommended reading Isobel Knight’s books on managing and living with hypermobility for more information on how to be the master of your EDS. I may get it…
But then again, maybe not…
After all, the focus I have on active healthy living – without dwelling on the labels and the whys too much – seems to be just the direction the doctors encourage… And I’m not sure a book will add too much else to my approach…
The full set of presentations from this May 9th seminar can be viewed on the EDSUK site. Many thanks to the team for putting together an extremely informative day.
Love this and thank you for summarzing so well. Will be sharing on my site as well.
I appreciate how this might work for someone with no injury.
how is one to be active on ankles that constantly sprain, strain or subux? gets regular shin splints? plantar fasciitis? how can one be active with tibial torsion? patellar dislocation? tendon tear in hip? and that’s just the lower body…
it is a very nice theory, difficult to implement. more like a pep rally than medical advice = “cookbook medicine”
I have ankles that sprain constantly, knees that dislocate, multiple patella problems, a tendency to improperly engage muscles, and the list goes on. I think the key to my own management of my pain and tendency toward injury has been regular consistent exercise, building up from a point where I would regularly sublux (medical usage of sublux meaning dislocation that reduces itself, not common usage of sublux meaning misalignment) joints to where I am today which is less frequent major injury related to EDS. Yes, it takes time, but it is do-able.
With regard to the rest of the advice – such as health being more than food and exercise, being aware of the lunatic fringe. Maybe that is motherhood and apple pie stuff – what you call a “cookbook” – but implementing this common sense is surprisingly hard. At least I find that to be the case, especially tips like pacing!
Good luck with however you choose to manage EDS – and if you have any top tips please feel free to share.
[…] the origin of this accusation to a talk held in May at the EDS UK conference, which is summarised in the Beating your limitations blog post by Donna. The slides that accompanied the talk can be found here. The first part of […]