Breaking Down the Barriers to Exercising with EDS and Hypermobility
Last year, I was finally diagnosed with hypermobility syndrome after many years of chronic neck and shoulder pain. Earlier this year, I was told I also have EDS, or Ehlers-Danlos Syndrome, which is a group of connective tissue disorders resulting from faulty collagen production.
Suddenly, everything I had been suffering from throughout my life made sense — the aching leg pains at night when I was a kid, the insane flexibility, the easy bruising, the migraines…it all clicked. In some ways, I was relieved. In many other ways, I was beyond distraught.
Staying in shape was almost always a part of my life. In junior high and high school, I played volleyball. In college, I worked out with a personal trainer. After college, I became a devout Yogi and was on the mat at least four times a week. This committed spiritual and physical regimen turned out to be my downfall.
The continuous overstretching, which I didn’t realize was happening due to my hypermobility, wore my already flimsy ligaments and tendons down. Soon, I was unraveling (literally) and in constant pain. I had to come to terms with the fact that the one thing I loved was seriously hurting me. I stopped doing yoga and eventually began my quest to find a diagnosis. Three years later, I got it.
Now, at 28 years old and with months and months of physical therapy and medication and injections under my belt with nothing to show for it, I’ve come to the conclusion that I need to find a way to be physical and active again.
I know I’ll never be able to exercise the way I used to — I can’t lift weights, I can’t do Vinyasa yoga, I can’t participate in a Tough Mudder or play volleyball…but after much research, I stumbled upon a video that truly outlines a healthy way for people like me to get in shape safely.
I’ve used this video to create my own regimen and set of best practices, and I wanted to share it with my fellow Zebras. But first…
For any of us to truly treat our bodies right, we have to understand what’s happening with them.
In healthy folks, tendons and ligaments act like metal coils (taut and stable) and muscles act like rubber bands (able to stretch but not too far because of those tight coils connecting them).
In folks like me with EDS/hypermobility, it’s the opposite. My tendons and ligaments act like rubber bands (stretchy) and are unable to hold the muscles and bones together. My muscles, as a result, are constantly in contraction mode for protection, therefore they are always tight and knotted up. This is why no matter how hard I try, no matter how many massages I get, my muscles just will not calm down.
And if I attempt to stretch out my muscles like a normal person, what I’m actually stretching are the tendons and ligaments. NOT GOOD.
And because my muscles and bones aren’t held together properly, it’s easy for my joints to be out of whack and to have subluxations and dislocations. For example, my right shoulder blade slowly slips out of place approximately 10,000 times a day. I then have to adjust it and pop it to get it back in. This puts constant stress on my joints causing chronic pain.
But if you look at my joints via x-ray or MRI, nothing looks off. At most, some of my joints look like there is a lot of space in between them. For example, my right AC joint has 8mm of space. A normal person has 4mm. But there is no tear, no inflammation, no visible osteoarthritis. All that exists, and you can’t see it, are overly stretched ligaments.
Ligaments cannot be strengthened or tightened through exercise. This is why scientists and doctors are experimenting with prolotherapy, which involves injecting a substance (sometimes sugar, sometimes a combination of things) into the ligaments in order to strengthen them. But this is experimental, therefore pricey and out of pocket.
So what we are left with is physical therapy. Kathryn Lister, associate clinic director with Physiotherapy Associates, hosted a webinar sponsored by the Ehlers-Danlos Society in 2015 called Intelligent Exercise. In this incredibly informative video, she outlines how hypermobile bodies work, why they work that way, and how we can work with them with proper, targeted physical therapy and exercise.
STABILIZE, STABILIZE, STABILIZE
According to Lister, the most important thing for us to do is to focus on our stabilizing muscles. The vital ones include the rotator cuff, multifidi, and deep hip stabilizers. These should be our primary focus because they are the first-line defense when it comes to stabilizing a joint, which our EDS and hypermobile bodies have to do constantly.
These muscles aren’t seen by the naked eye on the outside, therefore it’s easy to ignore them. But they are vital. These muscles are on and activated all the time. Because of this constant work, they can only fire at about 20–25 percent of their effort.
After we stabilize and strengthen those deep, core muscles, we can then work on strengthening/stabilizing the pects, biceps, and lats; erectors and quadratus; and our gluts and hip flexors. These are the muscles bodybuilders focus on during their workouts because these are the muscles we can actually see. These are the muscles that also help us move.
But in order to move properly, we need something stable underneath those muscles. This is why we must focus on our stabilizers mentioned above first.
And what happens if we ignore those stabilizers, like most people do, AND we have faulty ligaments and tendons that can’t make up the difference? It forces our other muscles, our movers, to do all the work.
Lister put it this way:
Telling our movers to do the job of stabilizing would be like telling a sprinter that they need to run 26 miles.
By overusing our movers, as we EDS patients do, we are continuously putting ourselves at risk for injury, chronic pain, and inflammation. So how do we turn on our stabilizers and strengthen them properly so our movers don’t get overwhelmed?
The key is subtlety, according to Lister. When you’re attempting stabilizing exercises like chin tucks and neck bends and doorway stretches, you can’t push too hard or else you will force your stabilizers to go beyond that 20–25 percent of their effort, making your movers come in and pick up the slack. If you’re seeing your ligaments or muscles pop out and trying to flaunt themselves during your stretches and exercises, pull back. You’re going too hard.
Another key component to remember is isometrics. We want to focus on exercises that isolate/target the individual muscles and activate them without actually moving the joint. This is the safest way to work the muscles we need to strengthen — finding a neutral position and gently activating them. If you’re sweating, you’re doing it wrong.
Lastly, and this wasn’t in Lister’s video but is something I’ve researched on my own, we need to focus on concentric movements. In a nutshell, a concentric contraction shortens your muscle as it acts against resistive force (like a weight). For example, during a biceps curl, the biceps contract concentrically during the lifting phase of the exercise.
THIS is the part of that movement we want to emphasize. And when we bring our arm back down during the curl, we CANNOT extend our arm all the way down to the bottom.
We want to perform as many of these concentric exercises as possible. We want to shorten our muscles, not extend them.
SO WHERE DO WE FOCUS?
Your neck houses your spinal cord, so the more instability you have in your neck, the angrier your spinal cord will get and the more symptoms related to dysautonomia and POTS you will get, ranging from dizziness to headaches to blurred vision and fainting spells.
Shoulder stability is also vital for EDS patients because of how mobile and therefore vulnerable the rotator cuff is. Performing gentle exercises that activate the cuff is important because as Lister said, “The stronger that these stabilizing muscles become, the better we are at knowing where our shoulder is in space.”
Of course, while you figure out how these exercises work for you, you will likely still have your ongoing pain.
Most EDS patients suffer from chronic pain, which is defined as pain that lasts longer than three months. Chronic pain can often trigger what is known as neurogenic pain. This means our bodies have become so sensitive that things that never used to cause us pain now do. Basically, our pain tolerance has dropped significantly because our neurological system is always active and ready to brace for impact.
Lister suggests helping offset this hyperactive system via rescue exercises — basically, these are movements and positions one would try out on babies that won’t stop crying. Try lying on your back, feet on the floor, knees facing up, and rolling from side to side slowly, dropping your knees as you go.
Small, slow movements, ones similar to yin and restorative yoga postures, are the best bet. Do these every night before you go to bed, or any time during the day, and it should help calm your system.
The sad part about all of this? It took me more than three years to find something that might work and it took me doing my own research after three rounds of physical therapy from three different therapists to stumble upon a video that explained the proper way for me to move. Not a single one of my therapists knew how to treat EDS and, as it turns out, all of them were having me do exercises incorrectly.
To sum up what I’ve found about exercising with EDS and/or hypermobility:
Learn about how your individual body works and responds to movements and to life. We are all unique, and our workouts and regimens will vary depending on that uniqueness.
Look at someone doing Crossfit and strongman competitions and think you can do it too. We just really, really can’t. In the short-term? Maybe. In the long-run? We’ll fall apart.
Focus on strengthening your rotator cuff, multifidi, and deep hip stabilizers via subtle, isolated, contracted movements.
Try to bulk up your biceps and your quads and your abs without having those stable muscles underneath primed and ready to go.
Practice restorative, relaxing postures like happy baby. It will help calm your nerves and likely reduce your overall pain response.
Do any high impact exercises like running (especially on concrete) or contact sports. Our joints cannot handle it. If you want to engage in something more intense, try swimming!
Use foam rollers to massage out knots.
Do static stretching like everyone else. We end up stretching our ligaments instead, and that is the exact opposite of what we want.
And most importantly…
Go easy on yourself. EDS is tough. So is hypermobility. We don’t need to add guilt on top of the many challenges we already face as a result of our disorder.
If you can, call around to physical therapists in your area and see if any of them specialize in hypermobility. If you find one, be as vocal and open as you can about your concerns. WE are the ones who should be in control of our recovery and our EDS.
Lister’s video on Intelligent Exercise with all of the above information and more can be viewed here: