Ehlers-Danlos Syndrome: What is it, and What Can PT Do?

There are many types of Ehlers-Danlos Syndrome (EDS), and they can be challenging to diagnose. Genetic tests usually confirm EDS. However, diagnosis may take several years, as the signs and symptoms of the disorder vary widely from patient to patient and are often subtle.

So, if you think you or someone you care about has EDS, you should talk to a qualified physical therapist who knows how to diagnose and treat this condition.

What is EDS?

Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders that affect the connective tissues in the body. Connective tissue supports our skin, organs, bones, joints, and other body parts. These tissues are made up of proteins called collagen, which give the structure its strength and elasticity. 

When collagen doesn’t work correctly, some or all of the structures may not work correctly. People with EDS have stretchy skin that bruises easily, loose joints, and hypermobile finger joints. They also tend to experience chronic pain, frequent dislocations, and ruptures of their tendons. 

There is no cure for EDS, but treatments are available to help manage symptoms, such as prescription medications for pain, physical therapy techniques to address joint hypermobility, occupational therapy techniques to manage daily tasks, and adaptive equipment for mobility needs.

Common Complications

Physical therapy can address common complications of EDS, such as joint instability or chronic pain. This may be accomplished through various treatment techniques, such as therapeutic exercise, manual therapy, postural education, neuromuscular reeducation, and/or patient education. The therapist will work with the client to identify goals appropriate for their physical abilities and limitations to provide a safe and effective treatment plan. 

Some of these goals could include, but are not limited to, improving the overall quality of life by reducing symptoms; increasing mobility and strength while reducing pain or managing a condition; reducing the need for medical aids (like braces and medications); increasing functional independence; and helping to promote socialization by encouraging more activity.

How Physical Therapy Treats EDS

Physical therapy can help EDS patients in many ways. Physical therapists are experts in movement and assist people in finding the most effective ways to move their bodies. They work with patients to improve their strength, coordination, balance, posture, gait, and range of motion. 

Treatment may include hands-on care from a therapist or hands-off care by using exercises or equipment the patient does on their own. Physical therapy also uses exercise to heal chronic pain conditions such as EDS. Many patients receive a set of activities to do at home made to fit their needs and limitations.

Physical therapy helps treat Ehlers-Danlos Syndrome through passive treatments like traction, massage, muscle stimulation, joint mobilization/manipulation, ice/heat packs, and more. In addition, the PT will create an individualized treatment plan based on each person’s specific symptoms.

PTs will also prescribe customized strengthening programs as well as give general advice about how you should go about living your life without overdoing it. Physical therapy has some limitations, but PTs can help manage the symptoms of EDS. If you have EDS, talk to your doctor before starting any new activities.

Physical therapy also addresses anxiety disorders related to Ehlers-Danlos Syndrome, caused by stress, fear of injury, and instability in social situations. It has been shown that relaxation and breathing techniques can reduce these feelings.

Tips for Living with EDS

While Ehlers-Danlos Syndrome may not be something people talk about often, this condition affects many people’s lives. Living with EDS doesn’t have to be a struggle, but there are some things you should know. Here are five tips for living with Ehlers-Danlos Syndrome.

  • Stretch your joints before getting out of bed or beginning any activity.
  • Avoid sitting on one side of your body for too long, leaning too far forward or backward, and pulling objects closer instead of reaching up high to keep your weight as close to your midline as possible.
  • Get plenty of rest every day and ensure that your pillow supports your head so that you don’t wake up sore in the morning.
  • Avoid repetitive motions such as throwing a ball for someone else’s entertainment or repeatedly picking up heavy items.
  • When necessary, use self-help techniques such as massage, heat therapy, and cold therapy to help with pain relief.
  • Work with your doctor to manage chronic pain and ask them about any medications they might recommend to help you feel better.
  • Connect with other EDS patients online or in person, and avoid isolating yourself from friends and family who understand. There are also support groups where people who live with the condition share their experiences with others who can relate.

Final Thoughts

Ehlers-Danlos Syndrome, or EDS, has been called a rare genetic connective tissue disorder. This is because it affects the body’s collagen and connective tissue. Connective tissues provide support for your skin, bones, and joints.

At Cawley Physical Therapy and Rehab, we have a team of physical therapists trained in helping patients with Ehler’s-Danslor Syndrome. Our practice uses techniques to improve mobility as well as strength and stability. We also have specific exercise programs designed to help improve the quality of life for those suffering from Ehlers-Danlos Syndrome. If you or someone you know suffers from this condition, contact us today for a free evaluation!

Please call Cawley Physical Therapy and Rehab: at 570-208-2787 or email