How Do You Train a Zebra?
Like many people with Ehlers Danlos Syndrome, I was diagnosed late in life but my symptoms started way back in my childhood. My exact response to my Dr when he diagnosed me was that he had not just (finally) diagnosed the symptoms that I had been struggling with for the last few years, but every single symptom I'd had my whole life.
Ehlers Danlos Syndrome is a group of connective tissue disorders (13 of them) that each have their own unique defect on the genes that affect the body's ability to make collagen. Some of the types have much more serious affects than others, especially those which affect the vascular system. But across all the types there is also a wide spectrum of how people are affected. Hypermobile EDS (the type that I have) sometimes called hEDS, or formerly 'type 3', is the most common type and as yet the genetic cause for it has not been found. It is the only type that commonly comes with the disorders Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS). Around 49% of people with hEDS have POTS and around 66% of people with both hEDS and POTS also have symptoms of MCAS.
Persons with EDS affectionately refer to themselves as 'zebras'. Zebra's are not exactly predisposed to being sporty. Pretty much anyone I went to primary school with would remember that I was hit in the head with a ball more times than I ever caught it. Being short on connective tissue means you are also short on the receptors within the tissue that give you spacial awareness (proprioception). So it's pretty normal to have poor coordination. Having weak connective tissue also means having loose joints that are prone to sprains, subluxations and even dislocations which can make participating in exercise really difficult.
But that doesn't mean that we can't find a love for exercise in our own way. I was very active in weight training from my mid 20s onwards as I learnt quickly that it helped to minimise the injuries that I got from boxing and running. I think it really helped to make the symptoms much milder than they could have been but as I have gotten older, my MCAS has gotten much worse, consequently muscle has gotten harder to build and my joints have gotten much looser.
When I first got diagnosed, I researched everything I could on exercise and hEDS. Some experts say you should avoid all exercise that isn't essential. This didn't work for me. Exercise is so much more than just physical for me, it really enhances my mood and helps to lower stress. The increased stress made my MCAS so much worse which caused a vicious cycle. Also, like many zebra's, most of my joints are affected by severe osteoarthritis which just gets more painful with less exercise.
So I eventually chose to do some Physio lead Pilates classes (which were helpful) as well as Jeannie di Bon's signature Pilates program "Strengthen Your Hypermobile Core" which was incredibly helpful too. I was never much of a Pilates person before this. Because I never felt like I was doing anything! I have since learnt that's perfectly normal for people with EDS. If you don't have the receptors you won't feel anything, but that doesn't mean it's not good for you. Pilates teaches you how to control your range of movement as well as gently building strength.
I've also experimented with not stretching. For quite a long time. And while this did help some of my joints, I ended up developing problems with muscle tightness in other joints. I've found that a great alternative is foam rolling and using massage balls. But I also find that brief active stretches, that don't push to the end of a range of movement, can be really beneficial. I never sit in a passive stretch anymore (definitely no more yin yoga), instead I actively move about in the stretch and keep my muscles activated around my joints to protect the tendons from over stretching.
So my exercise program now is a balance of pilates, mindful weight training and light yoga. Yoga has such amazing mind-body benefits so it's hard to stop practicing it even though I have to be very careful. I've come to a place where I'm ok and I can accept that I will always have some injuries that I just have to work around. I always try to keep my workouts really mindful and try to feel into my joints as much as I can so I can feel things going bad before they go really bad. If I do injure myself, I keep really calm and go straight for recovery. My RICE game is really strong!
Like most people with EDS, I've been injured by a lot of well meaning trainers. It's hard for anyone that doesn't have EDS to comprehend how fragile our joints are, and I get that it may come across as being a hypochondriac. That is part of what has made me a really client focussed trainer. Because I know what it's like to not be listened to and I swore I would never do that to my own clients. At the end of the day, no one knows their own body better than themselves. And the job of a good trainer is to get you listening to your body even better than you already do.