Hypermobile Ehlers-Danlos Syndrome (hEDS)
In April 2015, I was diagnosed with Benign Joint Hypermobility Syndrome (HMS) by a hypermobility specialist, Dr Hanadi Kazkaz, at the University College London Hospitals with a score of 5 out of 9 on the Beighton Score. EDIT: Most recently, the assessment was revised by Dr Mittal at the Hypermobility Unit at the Hospital of St John and Elizabeth to: Hypermobile Ehlers-Danlos Syndrome (hEDS) and a score of 7 out of 9 on the Beighton Score.
The diagnosis of a lifelong, chronic condition should have been sobering, but I was elated that a) someone took my long, ill-defined list of pains and aches seriously b) I could finally explain it all: the odd events in my life that caused my ankles to sprain and roll over, my joints to pop, click and crackle, my tiredness, my dizzy spells, my ‘growing pains’, my GI issues, and the persistent worry: is it all in my head?
If you want to learn more about hypermobility, take a look at the HMSA website by the Hypermobility Syndrome Association, a charity that raises awareness and gives advice to sufferers. I also found Isobel Knight’s “A Guide to Living with Hypermobility” incredibly helpful. Once you have an opportunity to hear other people’s stories, you’ll realise that you’re not a unicorn, or if you are, that you found your herd. Our journeys, experiences and unexplainable pains and injuries are so very similar.
While there’s a strong community spirit among the patients, that kind of compassion and empathy is amiss amongst those we need the most: those to help us diagnostically (GPs, gastroenterologists, rheumatologist) and those to help us get better (nutritionists, physios, personal trainers).
Long-term pain, chronic fatigue and the sheer emotional and psychological strain can be incredibly demoralising. Amid long-term pain and chronic fatigue, morale and emotional strength are what’s needed the most. The strength to get out of bed, to go to work, to be kind and compassionate to people around you (and to yourself), to keep working out, to pacing yourself, to manage your pain.
So far, I have seen
- a physical therapist (NHS) who showed me how to use gym equipment
- a Pilates physio (NHS) who showed me a set of core exercises
- a postural consultant (at work) who set up my workstation
- an osteopath (private) who adjusts my frame when a flare-up messed it all up
- a personal trainer with osteopathic training (private) who helped me develop workout routines to enhance endurance, strength, and stability of the joints.
Some of them worked well, others… well… not so well. I’m looking for a singular authoritative source to develop a programme for me and my needs that I can follow to manage my day-to-day, my flare-ups, and my development to a strong and healthy body and mind. Too much to ask? Probably. Over the next few weeks and months, I’ll attempt to develop and refine this programme myself. I’ll share my progress on Growing Up and Liking It. I’m not a qualified physiotherapist, personal trainer, osteopath, etc. I don’t hold the holy grail of hypermobility treatment and pain management. I’m exploring the variables that work for my body and its oddities. Some of what I find might inspire you to have similar conversations with specialists and experts in their field to develop something fit for you. I repeat: this isn’t hypermobility gospel, it’s simply my personal journey to getting better.
I’ve had GI issues most of my life. In fact, I was 2 years old when I was first admitted to the hospital for severe stomach cramps. In the 28 years to follow, I saw 100s of GPs and specialists, endured dozens upon dozens of invasive and non-invasive diagnostic tests, underwent 2 (unnecessary) surgeries, and became somewhat of a self-proclaimed nutritional whizz, until I mustered up the courage and trust in the medical profession: a private gastroenterologist. My father had bowel cancer when he was 45 years old, so we needed to undergo a (hopefully) final round of tests, but the gastroenterologist didn’t just focus on the gut. He looked at me as a whole: I was recently diagnosed with hypermobility and I had some success with exclusion diets (I’ve been gluten-free since 2008). He recommended I should look into the Low FODMAP diet. Although it’s meant to be a two-phase diet of elimination (6 weeks) and reintroduction, he suggested that I might need to prolong the elimination until my system had settled. And that’s where I’m at. I’ve been hanging out in the first phase for almost a year, which has served me well, but required a serious change of lifestyle.
There’s a lot still unknown about FODMAPs. While the great Monash University keeps working away on learning more about food types and their FODMAPs to devise recommendations on what’s suitable in which quantities for people like me, each and every one of us has to figure out our own tolerance levels.
I’m not a nutritionist, so please understand the recipes on Growing Up and Liking It as recipes that work for me and my tolerance levels. Please adjust them to your own requirements where needed.
Final note: Both hypermobility and Low FODMAP (as a diet to control gastrointestinal symptoms) are areas with many unknowns. It can be a long and trying journey – frustrating, demoralising and discouraging – to get to a place that works for you. I’m not there yet. But I’m taking comfort in the trust that there are specialists with a personal and professional interest in learning more about them. Hang in there.