Summary of the latest information and treatment approaches for Ehlers-Danlos Syndrome Hypermobility Type

(Repost of Beating Limitations summary on EDS UK’s “Managing your EDS” One Day Conference on May 9th)

One of other admins for the EDS Athletes group on Facebook that I help oversee is Donna.  Donna writes for a blog called Beating Limitations, which exactly that — posts about Donna’s life and how she is beating the limitations of living Ehlers-Danlos Syndrome and CMT (Charot-Marie-Tooth Disease).

Donna was born in the U.S. and is now married, lives in London with her husband and pup Felix.  Recently, Donna attended the one day conference on “Managing your EDS” that was put together by EDS UK (EDNF’s sister charity), and she posted a summary of the key points presented on her blog.  I have included Donnna’s 6 key points below, but the overall consensus of the conference — stay active (see quote below).

“…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.”

So, how do we stay active, when so many of us feel that we need to avoid activity because it causes us more pain, or because we have gotten hurt previously?  And, what about the post-exercise fatigue so many feel?

“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.”

Donna also mentions that it was suggested that individuals consider “seeking help and support to do this (by) reaching out to psychologists especially.”  

Does this mean that our fears, concerns or resistance to activity is all in our heads?

No, not at all — it just means that many times guidance can be helpful.  Many top-level professionals across all industries seek counseling, in order to overcome barriers they face in various areas of their lives.  Additionally, medical crisis counseling is often recommended for those who face difficult challenges and physical limitations due to a chronic illness or terminal disease.  This type of counseling has helped many people take the steps necessary to improve their overall health and wellness, including finding ways to remain active.

Below are Donna’s 6 key points summarizing the information presented at the EDS UK One Day Conference — “Managing Your EDS.”

“1. Beware of collecting labels – 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.  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.

“EDS is underdiagnosed in the medical community, but overdiagnosed in the patient community.”

2. There is no gold standard test for EDS Hypermobility – 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 warning – 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. Example – 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.”

(See presentation on Practical Pacing and Fatigue Management)

“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 is nothing more than hearsay 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.”

Donna also noted that it was recommended that people consider reading Isobel Knight’s books on managing and living with hypermobility.  Isobel Knight is a medical writer who has published a number of books on living with Hypermobility Syndrome/Ehlers-Danlos Hypermobility Type. See a list of her books below:

A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending Without Breaking

A Multi-Disciplinary Approach to Managing Ehlers-danlos (Type Iii) – Hypermobility Syndrome: Working With the Chronic Complex Patient

Using the Bowen Technique to Address Complex and Common Conditions

A Guide to Living With Hypermobility Syndrome: Bending without Breaking

Link to Donna’s entire blog post – May 9th EDS UK “Managing your EDS” Conference

Additional Resources for Ehlers-Danlos Syndrome Hypermobility Type:

– The full set of presentations from this May 9th seminar can be viewed on the EDSUK site.

Summary of Donna’s “The Five” blog post

Common questions and answers about EDS and exercise

Physiotherapy & exercise resources 

My daily motivation – the “Just 5 Minutes” rule

Why exercise is important in “moving our DNA”

I have EDS, now what – page with various links to resources and information on EDS (updated regularly)

The EDS Spiral – post on how lack of regular daily activity can propel our symptoms and issues with EDS further

Our Stories of Strength – Living with Ehlers-Danlos Syndrome – an anthology of stories from those living with Ehlers-Danlos Syndrome and how they have found ways to persevere.

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