30 Apr 2019 Moving Pain-Free with Hypermobility and Ehlers-Danlos Syndrome
Apologies that I have been absent from my blog for a few months. I have been working on a project very special to my heart. For the past months, I have been busy writing my second book – Hypermobility Without Tears, which is a step-by-step guide to help people with hypermobility and Ehlers-Danlos Syndrome move pain-free. The book focusses on my Integral Movement Method (which was introduced in my first book, Pilates Without Tears) and how my method can help bring attention to the six key principles I always follow when working with my hypermobile clients: Breath, Relaxation, Proprioception, Stability, Balance and Posture. I would also like to thank Dr Leslie Russek of Clarkson University, New York, for writing me such a beautiful foreword to the book.
The first chapter of the book shares my own personal journey with EDS. As a thank you for reading my blog, I’ve included below an extract from the book of my journey. I do hope you enjoy it.
“When you hear hoof beats behind you, don’t expect to see a zebra”
T E Woodward, Medical Researcher, 1948
I can still remember the barrage of tests and investigations. The confusion on the doctors’ faces, as results were showing no serious underlying condition. That’s what they were looking for – I realise that now. They were not looking for a zebra. They were trained to look for horses – the predictable, easily recognizable. They had probably not even heard of Ehlers-Danlos Syndrome (EDS) back in 1983. Medical students today still receive little training or information about connective tissue disorders like EDS. In 1983, I was 13 years old and after the stress of my parents’ divorce, I had started suffering severe digestive issues. After a few months, the doctors announced I had Irritable Bowel Syndrome (IBS). I’ve lost count of the number of times a doctor has told me it’s all down to IBS and instructed me to eat more fibre and try Pilates or yoga to relax. Dismissive in its nature and kind of ironic now, as I trained to become a Pilates teacher in 2008.
Looking back over 30 years later, I see this original stress was the trigger for this connective tissue disorder, EDS. Like many people with this condition, the IBS diagnosis was just the start of a long list of ‘unrelated’ medical conditions over the years. Crippling knee pain put a stop to my county level cross-country running, chronic back and shoulder pain became a constant feature. I felt old and tired in my twenties. Unexplained stretch marks and wounds that wouldn’t heal, leaving strange looking scars behind. I remember being scorned by a local doctor when I asked why I was suffering from random bruising, that I had no recollection of causing myself. Somewhere deep in my mind, this lack of answers was causing me stress and worry, but I tried to forget and carry on with my life.
Things did settle for a while – I think I just put up with daily migraines and a jaw that would lock shut overnight. I married and looked forward to starting a family. I discovered then the hormonal changes in pregnancy set off a whole new part of my EDS journey: pelvic girdle pain, quick dilations in labour and a postnatal exhaustion I thought all new parents had. But my exhaustion went on for years, I never seemed to have the energy that other mums my age had. They all wanted to go to the park after school and have play dates. I just wanted to crawl home. I craved sleep so badly. Exhaustion finally led to pneumonia – two episodes in quick succession with lengthy hospitalizations.
But you carry on past the sickness, past the diagnosed mitral valve prolapse, the chronic fatigue, past the third pneumonia. The whole host of medical complaints became quite a list. The years pass by, you think this is just how you are. Deep down I thought there must be a severe illness waiting to be discovered. Surely it was not normal to feel like this.
I wanted to feel in control again of my body and my mind. I was worrying too much about my health. I focused too much on what was wrong with me. In 2007 I found an exercise method that seemed to agree with me. A physiotherapist I was seeing for chronic shoulder and back pain recommended to try Pilates. His exact words were “you are literally hanging off your joints. You have no stability or core strength”. I had no idea what he was talking about, but I tried a class. It was gentle, non-impact and also relaxing. There was so much about it I liked – I was soon taking 3 classes a week and in a short space of time, I knew I was going to train to be a teacher and learn as much as I could about movement.
Fast forward 10 years, my physical and mental pain had gone. I’d spent the years teaching thousands of clients and attending courses to learn from some of the world’s leading experts in movement and anatomy. I have read almost every book out there on movement theories and philosophies. I had refined and organized all that I had learnt and figured out into a method for my body – the Integral Movement Method (IMM) – that had healed my pain and made me strong for the first time in my life. The best thing was being able to share the method with my clients and a growing client base of people with EDS (it’s funny how the universe works sometimes – it brings you the people you are meant to meet and work with) and chronic pain. I started to see this method, which I created to heal my own body, really did work on other people too. My first book Pilates Without Tears (2016) examines this method in full detail. (We will review the main elements of the IMM in Chapter Seven)
But, EDS has no rules. It’s unpredictable in nature. I knew my symptoms were exacerbated by stress. The sudden death of my mother in 2017 after a cancer battle left me distraught. The stress was just too much for my body to bare. It went into overdrive and the rest of the year was spent battling a little-known condition called Mast Cell Activation Disorder (MCAD). Mast cells are important blood cells in the body for protecting the immune system. In a healthy system, the mast cells act beneficially to protect and heal the body, but with a disorder these same cells trigger inappropriately and can have a negative effect on the body (www.mastcellaction.org). My body was fighting everything – my autoimmune system was wrecked. My consultant then diagnosed EDS. I cried tears of relief. Like many of you reading this story, the frustration of not being heard for so many years causes distress and pain. I finally had confirmation of something I had felt all along – I too was a zebra. This empowered me further to continue to spread awareness and knowledge of the power of movement therapy. This is how this book has come to fruition, for which I am so grateful to have this opportunity.
I wanted to share my personal journey with you because I know it is not extraordinary. It is a common journey for those with EDS and hypermobility disorders. I understand the pain and frustration you may have experienced over the years. I’ve known the fear and isolation of not knowing what to do, how to improve my health and experiencing a lack of understanding in the medical, health and fitness industry. Over ten years of self-exploration, searching for answers and solutions led me to movement therapy. Movement therapy was the key to my return to health. There is currently little research in this field: there is one paper – “The Pilates client on the hypermobility spectrum” (McNeil et al, 2017) – examining the impact of Pilates on EDS, but this was with a study sample of just one client. There is however research into the impact of Pilates on various issues which highlights benefits that could also positively impact people with hypermobility. A recent study by Byers et al (2017) found that “Pilates has demonstrated efficacy as a tool for the rehabilitation of a wide range of conditions”. This is useful information, as we know that EDS and hypermobility come with a vast array of conditions and co-morbidities. In a further recent study by Cruz-Diaz et al in 2017, they found that twelve weeks of Pilates intervention were effective in reducing pain intensity and improving disability, fear of movement and improving deep trunk muscle thickness.
This book is structured to allow you to follow my method as I do. It shares the path I take all my hypermobility clients on and opens the door to pain-free, confident movement, without fear and anxiety. I truly hope it will serve its purpose for those with hypermobility to begin moving, to discover a new approach to exercise. The book is easy to read and follow, with practical exercises along the way. Chapter One invites us to examine our breathing patterns and the implications on our health. Chapter Two turns attention to the mind body connection – how we can unravel tension and stress that may be holding us back. Chapter Three examines the role of proprioception and leads into its partner, Stability, in Chapter Four. Balance is essential for everyday life and Chapter Five will delve deeper into this topic. The No Pain, No Strain evolution is explained in Chapter Six. By Chapter Seven we are ready to demonstrate how the Integral Movement Method can help with hypermobility and EDS.
My message to you through this book is that there is hope. No matter what your previous story, take heart that every small physical step is a huge emotional one. Through small steps, you will grow in confidence.
Enjoy this journey. It’s personal to you. We are all unique, there is no right or wrong to seek but simply the enjoyment of moving well and feeling connected to our body and mind.
Thank you for reading this short extract. If you would like to read more, my book will be available soon on Amazon.
RadwaPosted at 20:07h, 01 May
I want to purchase it it’s available for Egypt
Jeannie Di BonPosted at 08:57h, 02 May
Yes, it will be on Amazon soon.
Melanie Chalmers GibsonPosted at 22:12h, 01 May
So looking forward to ordering and reading your book, Appreciation of the journey you have been on and the related circumstances, the triggers of the various generally misdiagnosed or understood linked conditions. I also would really appreciate knowing if you happen to do workshops? I am an occupational therapist and also just about to complete my yoga teacher training, thank you
Jeannie Di BonPosted at 09:45h, 03 May
Thank you – I do hope you will enjoy the book. Yes I do run workshops in London at Polestar Pilates UK. I have June and September for this year coming up. Hope to see you at one of the workshops. Jeannie
KatiePosted at 14:23h, 03 May
When will it be released?
Jeannie Di BonPosted at 21:17h, 09 May
The book is just going through it’s final checks and should be released any day now. Please check Amazon on Monday 13th May.
Vijay JosyulaPosted at 17:22h, 24 May
Can I get a kindle copy please.
AmandaPosted at 13:07h, 29 May
I am so excited to find this book! I have hEDS and despite managing symptoms relatively well since my teens, things have become so much worse since my pregnancy 7 years ago. Since then I have suffered from massively increased symptoms, and become so debilitated that I can barely function some days. The doctors have, as usually happens, been stumped and simply added additional diagnoses on (Fibromyalgia or ME/CFS, they couldn’t decide which) because they couldn’t understand why my symptoms were suddenly so much more pronounced. Personally I think it’s far more likely that my pregnancy (which was complicated in several ways) and the demands of parenthood (especially to a child with ASD) has simply pushed my body beyond its limits and I simply cannot figure out how to recover from such a debilitated position.
To find a book that is written specifically for those of us with EDS is amazing, and I feel quite emotional to be honest. I have become so afraid of movement in many ways (because, for instance, my neck crunches when I try to roll out the kinks, or my pelvis and hips “pop” when I try doing basic spinal movements in Kundalini Yoga) and between this and getting stuck in bed for days at a time due to fatigue and dizziness, my body is suffering massively. My back and neck are in complete spasm a lot of the time, and I simply don’t know how to ease it without making it worse. So I have ordered both of your books and cannot wait to read and work through them. As someone who has co-authored a book for patients before, I know just how much time and effort will have gone into putting this together – thank you!
Jeannie Di BonPosted at 12:38h, 05 June
Thank you for your lovely comment. I hope you find the books useful. I too had issues after my second pregnancy.