Ehlers Danlos Syndrome is a group of conditions that is characterized by collagen abnormalities and has a strong genetic component. Each subtype of Ehlers Danlos Syndrome affects different body systems and some are more severe than others. For example, there is collagen in blood vessels, skin, ligaments, and basically every part of the body. In this article I’m going to talk mostly about the hypermobility and classical subtypes of EDS. These both involve the joints and are frequently seen by physiotherapists.
If you want more information on Ehlers Danlos Syndrome, check out www.ehlers-danlos.com.
Although fatigue is not part of the diagnostic criteria for EDS, it is a common part of the experience. In this section I’ll be talking about my own journey with EDS and as a hypermobile person who looks at the world through the lens of a physiotherapist.
When I seek treatment for any musculoskeletal issue or I tell someone in healthcare that I have EDS, the first recommendation is always strengthening. It’s true that I’ve found that if I’m out of shape, my symptoms get worse. But when your pelvis subluxes in your sleep, no amount of strengthening will help.
In my opinion, my muscles are quite strong. I have a physical job and I exercise regularly. I can even lift my squirmy 70lb dog into the bathtub! What I experience is that my muscles are constantly working to maintain joint stability. This level of muscle tone takes a lot of energy and leads to fatigue.
Again, I’ll emphasize that this is my own experience and this is not necessarily the case for everyone with EDS.
The idea for this post came to me while I was riding my bicycle one day. I was going up a small hill and – without giving it much thought – I focused on lifting each foot as it came around the back. Normally when I pedal, I push down with the foot that’s in front. By thinking about lifting I was able to glide up the hill easily. My feet weren’t working against each other and the task required a lot less energy.
Living with EDS and fatigue is like riding a bicycle and pushing down with both feet. If you’re also the type of person who uses muscle tone to provide joint stability, give it a bit of thought. Riding a bicycle involves a rhythmic loss and recovery of balance as our center of mass shifts from side to side. The most stable position is with both sides pushing equally. But that won’t exactly get you anywhere.
Another similar analogy is trying to drive your car with the hand brake engaged. The brake is very useful for static stability and if someone bumps into your car, it will probably prevent your car from rolling down the hill. But life isn’t static; we are dynamic individuals. Think about this: how much gas would you burn through if you always drove with your hand brake engaged?
For someone with hypermobility, what is a viable strategy to manage fatigue and other symptoms? Coordination.
In physiotherapy lingo, strength is how much force a muscle can generate while coordination is the timing of different muscles working together. In the bicycle analogy, it’s the alternating push/pull of each leg that makes the bike move forward. The muscle relaxation is just as important as the muscle contraction. This means that we have to look at functional movement differently for anyone with hypermobility. It’s not as simple as pure strengthening.
If you have Ehlers Danlos Syndrome or joint hypermobility, talk with your healthcare provider about fatigue. Your muscles may be working against each other instead of working together. You can always reach out and ask questions! If you live in Calgary, you can come and see us in person.
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