Updated: Apr 27
Ehlers-Danlos Syndrome (EDS) is a group of genetic, inheritable connective tissue disorders that affects many parts of the body. It involves varying degrees of excessive joint mobility and skin fragility and extensibility. Because of the vast spectrum of EDS, some of us may walk around without a clue that it exists, maybe only easily bruised, while others may have life threatening conditions.
Wherever you are in your EDS journey, it's important to realize that physical therapy can play a huge role in your treatment plan. Unfortunately, since EDS is genetic in nature, we cannot cure the syndrome. However, we can alleviate symptoms associated with it.
Here are 6 ways physical therapy can help your EDS pain:
One huge aspect of physical therapy care in the treatment of EDS involves muscle strengthening. Our skeletal muscles are the only voluntary muscles in our body that we can actively contract, relax, strengthen, and stretch. A combination of mild-moderate resistance and endurance exercises are beneficial to maintain healthy muscle tone.
Because EDS already causes excessive stretching, it is important to focus on strengthening muscles in a safe way. Pain, fatigue, and fear of injury may prevent people with EDS from maintaining a regular exercise program. A PT will stress the importance of safe exercises. Studies have shown that swimming is a great way to build endurance while managing pain. Gentle, lightweight, non-weight bearing exercises can also decrease pain related to joint instability.
Infants with EDS may present with “floppy baby” syndrome where their muscles have less tension. Children may have developmental delays, late walking, increased falls, reduced endurance, and clumsiness. Early intervention physical therapy and pediatric physical therapy can allow infants and children to improve motor skills and muscle tone.
*Note: If you are pregnant or thinking about getting pregnant and are diagnosed with Classic EDS, then it is helpful to see a pelvic floor physical therapist as soon as you can. Pelvic organ prolapse and incontinence may occur postpartum due to decreased tissue integrity. Female adults may also encounter more frequent instances of urinary urgency, bladder pain, and incomplete bladder emptying. Strengthening the pelvic floor muscles can help prevent and manage these symptoms.
Proprioception is your joints’ ability to know where they are in space. It allows us to maintain balance, move our limbs in a coordinated way, and prevent falls. People who have decreased proprioception also may have poor balance and can end up with injuries like sprained ankles. With EDS, proprioceptive training can help control joints from over-extending and prevent ligament injuries. One simple example of a proprioceptive exercise is balancing on one leg without arm support. A more complex example is balancing on one leg on a foam surface while playing toss.
Because EDS involves joint hypermobility, it is important to avoid activities that might further stretch muscles and move joints in repetitive ways. For example, in the case of Classical EDS, which mainly consists of stretchy skin, poor scarring, and joint hypermobility, it’s important to avoid vigorous contact sports like football and to be cautious not to reopen stitches and wounds.
Splints, bracing, and orthotics can be used in severe cases to limit excessive movement of joints. For example, for people with the type of EDS involving excessive dislocations, supportive bracing around the involved joints can help stabilize this area to prevent shearing and injury as well as provide proprioceptive training. Foot inserts, orthotics, and mobility aids may be used for children with poor balance and coordination to reduce falls and improve their participation in games and activities.
Temporomandibular disorders or TMDs (like jaw popping/clicking, limited or excessive mouth opening, and pain in the jaw) are thought to be present in 70% of people who have EDS. Mouth guards and mouth plates can improve alignment and decrease teeth grinding, however they can cause easy oral wounding as well. Displaced neck bones from hypermobility may result in TMDs since these areas are closely connected. In one study 71% of people of people with EDS who had TMDs also had cervical spine disorders. To prevent these issues as much as possible, it’s important for people to maintain good posture and avoid excessively hard foods.
Note: Cartilage defects can lead to collapse in facial features and jaw alignment, which can lead to poor breathing patterns and sleep disturbances.
It is important to note that pain is an important aspect of EDS. Studies show that 90% of people who have EDS have chronic pain. Children and adults with EDS may experience hyperalgesia, which is hypersensitivity to painful areas due to an increased nervous system response. Children with EDS typically complain of pain in the shoulder and knees after exercises. Sometimes, children will withdraw from games and activities in school because of exercise-induced pain and injury, which has a sizable psychosocial impact. Pain may be due to subluxations or dislocations of joints, tissue injuries, muscle weakness, instability in the spine, and more. Treating pain through light movement, mindfulness exercises, and modalities like heat and ice can alleviate pain.
People with EDS encounter a complex set of unique challenges. Because of the varying degree of symptoms, it can be difficult to diagnose and treat the condition. Seeking help from a counselor or psychologist can help if living with EDS is overwhelming. While the syndrome itself cannot be cured due to its genetic nature, it is important to note that there are plenty of actions to be taken to prevent, reduce, and manage symptoms.
Being part of a community of those who understand you can also help. We are building an inclusive community of individuals who want to live their life with less pain and be able to do what they love. If you're interested in learning more about this incredible group of people, send an email to firstname.lastname@example.org with "Zebra Strong Network" in the subject line and we'll get you plugged in.