When you have Ehlers Danlos Syndrome (EDS), or a Hypermobility Spectrum Disorder (HSD), it can often feel like your joints are out of place. For years, chiropractors and physical therapists have been doing adjustments, (also called joint mobilizations, or manipulations) to help reposition joints and restore alignment. But when it comes to Ehlers Danlos and adjustments, is it the best treatment option available?
At first glance, this sounds like a good idea. Some people with EDS or HSD report feeling better when their joints have been realigned by a healthcare provider, at least temporarily. Unfortunately, this can be expensive to maintain because the joints tend to slip out of alignment again and again.
To really come up with a good long-term solution for a problem, we first have to be able to identify what the problem is. People with EDS and HSD have loose connective tissues. While that can affect them in many ways, ligaments are a connective tissue that specifically helps to stabilize joints.
There are two main systems that stabilize our joints. The first is out ligaments. Ligaments work a lot like rubber bands. If you put tension on the band, it will want to pull you back to a resting position where there is less tension. This happens automatically, without any need for our brains to tell our ligaments what to do.
If the rubber band is loose and stretched out however, it won't hold things together as well. It is not something you can voluntarily control, it's simply a matter of genetics and the make up of the collagen fibers in the ligament tissue.
The second system is our muscles. Under the direction of commands from our brains, muscles control our movements voluntarily. They can contract and relax to guide the position of our bodies.
It's good news that we have multiple systems that help hold our joints stable. That means that if one system isn't working correctly, our bodies have a back up built in. While an external adjustment performed by a skilled healthcare provider is one option to help restore alignment of joints, it doesn't ensure that the position of that joint will be maintained in a healthy place. For that to happen, the muscles need to do their job well to hold the joint in position when the ligaments aren't able to do their part.
If you are seeing a healthcare provider for adjustments, they should also be teaching you how to try and use your muscles to keep your joints in good posture. If a provider isn't doing so, it may be simply because they don't know better. Some educational programs instruct providers only on how to manually reposition joints with their hands or other tools. Some providers are well intentioned and believe themselves to be helping their patients by providing a service to realign their joints on a regular, ongoing basis. Most healthcare providers do go into their profession to help their patients and are well intentioned.
Others however may not have sincere/good motives. We must recognize the sad reality that the livelihood of the healthcare provider is dependent on other people being sick and injured. This is a subtle, but inherent conflict of interest in the nature of their work. Healthcare providers make less money on patients that get better and stay better. They generate more income from patients who feel better temporarily, but require ongoing services.
Healthcare providers are told to do their best to "put their patients first". Part of that means that our goal should always be to work ourselves out of a job. If there is a way for a provider to save a patient time and money by teaching them to manage a condition themselves, we should always attempt to do so (provided the patient can do so safely).
Teaching our muscles to hold our joints stable can be challenging. In fact, for many people with EDS and HSD, they experience chronic muscular pain due to the overuse of muscles, trying to maintain the position of their joints.
Some muscles are built for endurance and maintaining posture, but not all muscles are meant to work all the time. A healthcare provider who specializes in muscular function and patients with EDS is often needed to help patients learn how to distribute the workload appropriately amongst their different muscles to alleviate their soreness. Otherwise, some muscles tend to dominate in trying to provide stability that shouldn't be doing all the work. Those muscles end up overworked and sore. Meanwhile there are other muscles that are weak and don't help out like they should.
Some patients have had less success in physical therapy in the past than they had hoped for. It is worth acknowledging that not all physical therapists are well trained in managing EDS and HSD. This is where, truly understanding the problem becomes important prior to rushing in to offer solutions.
The real secret lies in understanding the ligaments. Ligaments do more than just stabilize the joints. They also house a special type of nerve cells called proprioceptors. Proprioception is your body's ability to sense its position in space. If you sit with your eyes closed, and move your finger up and down, a healthy body can sense whether your finger is pointing up or down at a given time, even when you can't see your finger.
The ability to sense where your joint is, is crucial for you to be able to respond at the right time, with the right muscles to hold it stable. In short, if your body doesn't understand the problem, it can't respond accordingly. This can lead to problems with joints dislocating, or subluxating (almost dislocating, but slipping back into place on it's own). It also contributes to chronic muscle soreness from overuse as the body tries to stabilize a joint inefficiently or with the wrong muscles. For more on how to fine tune your proprioceptive sensing system, see Perfecting Proprioception (Coming soon).
If you'd like to work with a physical therapist who specializes in patients with EDS and HSD to discuss your specific case, contact our office or click Book Online to request an appointment. While we offer telehealth services, if you are not local to our area, and prefer an in person visit we suggest consulting the EDS Society practitioner directory as a resource for finding a provider in your area. Please remember that this article is intended for educational purposes and is not a replacement for individual medical advice from a licensed healthcare provider.