Lost in Space? How EDS Affects Proprioception

Living with Ehlers-Danlos syndrome can sometimes feel like you’re navigating outer space in a spacesuit with faulty sensors. It makes you feel uncoordinated, ungrounded, and not steady. Let’s launch into the details on the connection between Ehlers-Danlos syndrome and our sense of space. Are you lost in space? How EDS affects proprioception.

Ehlers-Danlos syndrome (EDS) is a complex, genetic condition affecting connective tissues—the framework supporting the body. When connective tissues do not develop properly, structures, such as joints, bones, the heart, blood vessels, eyes, and teeth, are neither well-protected nor secured.

There are 13 types of EDS, and each affects the body differently. Overall, most types include the following factors.

– Joint hypermobility: Joints in the body are extra flexible and have more range of motion than needed.

– Skin hyperextensibility: The skin is loose, stretchy, and has a velvet-like texture.

– Weak tissues: The body becomes more fragile, which results in easy bruising, poor wound healing, and more injuries.

Our brains are constantly receiving information from our senses. Our eyes send visual information, our ears provide auditory data, and our skin sends signals about what we are touching. Proprioception is the ability to sense the correct, current position and movements of your body. It’s how we can tell what our hands, legs, and other body parts are doing without relying on our eyesight.

How do we do this? We have proprioceptive sensors throughout the body, similar to our visual, auditory, and touch sensors. These proprioceptive sensors are located primarily in our muscles, tendons, joint capsules, skin, and fascia. These sensors send information to the brain to be processed and understood, which helps us walk around obstacles, touch our fingers to our noses with precision, descend stairs smoothly, and catch ourselves if we trip.

Poor proprioception is a common issue for people with EDS. They can feel as if they don’t know where their body is in space. They may often bump into tables, trip over their own feet, drop objects, and unintentionally slam doors.

Since many body systems are impacted by EDS, there are multiple reasons why people with EDS have poor proprioception, including the following.

– Poor sensors: The tendons, joint capsules, skin, and fascia, where proprioceptive sensors are housed, are all types of connective tissue, which are not formed properly in those with EDS. When connective tissue is loose and stretchy, the proprioceptive sensors can’t fire accurately or consistently to send the right information to the brain.

– Fatigue: With loose connective tissues and other structural changes, people with EDS often get tired easily and have weakened muscles. This also reduces the ability of proprioceptive sensors to work properly.

– Brain changes: Some people with EDS have structural changes in the lower part of the skull, where the brain and spinal cord meet. This is an important highway that proprioceptive signals take to reach the brain. If this highway is not functioning well, it’s more difficult for proprioceptive signals to reach the brain and be processed.

Those with EDS have an increased risk for injury, and their impaired proprioception is one reason for this. It is important to give the proprioceptive system the support it needs.

Thankfully, there are ways to improve proprioception with exercise! It takes time, patience, and focus, but it is possible to better “tune our space sensors” to reduce injury risk. The following are three elements that exercises can include to target proprioception training.

Closed-chain exercises are an excellent way to send more information through our proprioceptive sensors. Imagine your arm is a chain, with your shoulder, elbow, wrist, and hand bones all links in the chain. When the end of the chain (usually the hand or wrist) is in free space during an exercise, the exercise is considered open chain. When the end of the chain is in contact with a stable, immovable surface, the exercise is a closed chain. An example of an open chain exercise is a bicep curl (where the hand is moving through space), and a closed chain exercise is a push-up (where the hand is planted on the floor and unable to move).

When proprioception is impaired, open-chain movements are significantly more challenging because proprioceptive sensors can’t pick up enough information to control the movements. The stable, immovable surfaces used in closed-chain exercises provide extra data to our proprioceptive sensors, which makes the movements more controlled and intentional. Picking closed-chain movements over open-chain movements is a great way to feel more confident in your exercises, gain more proprioceptive information, and reduce injury.

Our core muscles—the stomach, back, pelvic, shoulder blade, chest, and hip muscles—are essential workers in every movement we do. We rely on our core muscles to activate to keep ourselves upright and stable. With a weak, uncoordinated core, we have a higher chance of injury as well as decreased proprioceptive data for the brain to use.

Adding dynamic stabilization to an exercise improves the ability of the core muscles to remain stable and alert while our arms and legs move. It is also an excellent way to get better balance, which relies heavily on proprioceptive information. Dynamic stabilization exercises involve intentionally and properly activating core muscles throughout specific exercises intended to throw off balance, such as bird dogs, standing on one foot, and side planks.

With poor proprioception, our brain is not fed enough information from our proprioceptive sensors. This makes it hard for our bodies to understand where it is in space. Therefore, frequency is an important factor when focusing on proprioception training. Perform these exercises consistently to increase how much proprioceptive data routinely sent to the brain. This doesn’t mean you need to do a full, difficult workout multiple times each day. Quick, intentional exercises at consistent intervals throughout the day can be an excellent way to dispatch more data to your brain and give your proprioceptive system more support.

Physical and occupational therapists can create exercise plans that incorporate these three components and more to help those with EDS feel more grounded and less lost in space. Check in with your therapist for specialized care on how to live long and prosper with EDS!