Physical Therapy for Ehler’s-Danlos Syndrome/Hypermobility Syndrome By: Kelsey VanVolkenburg PT, DPT
What is Ehler’s-Danlos Syndrome?
Ehler’s Danlos Syndrome (EDS) is a connective tissue disease caused by abnormalities in the structure, production and processing of collagen. Your connective tissue consists of structures such as your skin, joints and blood vessel walls. The most common symptoms of EDS are flexible joints and stretch, fragile skin. There are 13 different types of EDS, therefore not every person diagnosed will have those common symptoms. The 13 type of EDS are: hypermobile, classical, vascular, kyphoscoliosis, arthrochalasia, dermatosparaxis, brittle cornea syndrome, classical-like, spondylodysplastic, musculocontractural, myopathic, periodontal and cardiac-valvular. These are all inherited, genetic disorders that are caused by mutations in a variety of several genes.
How is EDS diagnosed?
There are several ways that EDS can be diagnosed by health care providers. Collagen typing can be performed by taking a skin biopsy that will determine abnormalities in collagen. Genetic testing can be performed to determine if there are any genetic mutations. With the hypermobility EDS, genetic testing will not be of any benefit. Certain imaging studies such as CT scans, MRIs, ultrasounds and angiograms can assist in the diagnosis with some forms of EDS. One last way to diagnose EDS can be a urine test to find deficiencies in enzymes that are important for collagen formation.
Physical Therapy Management for EDS
Physical therapy plays a crucial role in the care for an individual diagnosed with EDS. Management techniques range from ways to manage pain relief and physical fitness to even the psychological end of treatment. Here are the most important areas that physical therapy will help with the treatment for EDS:
Pain relief- Physical therapists have extensive knowledge of the musculoskeletal system of the human body and should be giving their patients education regarding pain and why they are experiencing it. Modalities are a good tool for pain relief, such as hot and cold packs and TENS machines. Manual techniques such as trigger point release, soft tissue massage, and light mobilizations at stiff joints.
Posture and motor control- Research has demonstrated that in individuals diagnosed with hypermobile EDS, the trunk is affected the most. The trunk of the human body serves as the core, which is the main support system for the entire body. Efficient trunk/core stability and strength is necessary for peripheral (extremities) control. For example, if there is not enough stability at the core and hips, this will lead to control issues down the chain to the knees and feet. Motor skill training relates to how the brain interprets pain and muscle activation. Pain will cause an excitatory response to the motor cortex of the brain and will cause protective responses and will hinder any learning of the brain; therefore, exercises should be pain free.
Strengthening- Muscle weakness is a common clinical finding in those individuals diagnosed with EDS. Hypermobility of the ligaments then leads to reliance of the muscles to provide stability of the joints. Physical therapists prescribe an exercise plan in a gradual progression from non-weight bearing to weight bearing and static exercises to dynamic exercises. Another common treatment plan is aquatic therapy using water resistance to strengthen weak muscles.
External support- While most patients feel that wearing supports such as braces will help aid in their recovery, this is not always true. With an individual with EDS, during the acute phase of an injury/pain, using supports is helpful for healing and proprioception. After the acute phase, using a support may hinder proper muscle strengthening and it is important to wean away from the use of these.
Gait training and functional training- Individuals diagnosed with EDS often have poor movement patterns and altered gait patterns due to core weakness and ligamentous weakness, which in hand leads to problems with fatigue and decreased stamina. Physical therapists can help to improve gait and functional training by providing an exercise program targeting proper muscle and proprioceptive strengthening needed for gait and functional movements that are specific to the patient’s needs. Physical therapists receive extensive knowledge on proper biomechanics during functional movements and they give the patients education on this as well to ensure they are safe with movements and avoid further injuries.
Balance and proprioception- Balance and proprioception problems are common with hypermobile EDS. Proprioception is the perception/awareness of the position and movement of the body. This is both with the joints and occasionally even with the skin when individuals suffer from skin laxity is an issue. For the skin, wearing gloves or taping will help to promote proprioception, which the physical therapist will assist with this. Examples of working on proprioception at the joints is using different surfaces to stand on or the therapist moving the joint from different angles against the patient’s resistance, called a rhythmical stabilization. Physical therapists help patients with balance by having them do a variety of exercises such as balancing on one leg, maintaining kneeling positions and using Swiss balls.
Psychological support- Physical therapists have the ability to refer patients to other health professionals when necessary, such as psychologists, if they feel that this is appropriate. They may reach out to the primary care provider first and make the recommendation and the patient will be taken care of. Also, pring education on stress techniques, pain management techniques, proper nutrition and proper sleep will also help the patient in terms of psychological support.
General fitness- Individuals diagnosed with EDS commonly are suffering from pain, and pain usually leads to a more sedentary lifestyle. Physical therapists will provide education on the importance of maintaining a healthy lifestyle, not only for the importance of rehabilitating for their diagnosis, but for their overall health. Performing exercise, even if it is walking, will help with cardiovascular health, keep joints moving, and decrease the chance of other health issues. Every person is different depending on what form of EDS they may be diagnosed with and any other health issues they may have, so not every treatment program will be the same. This is why it is very important to reach out to a medical professional before starting a new exercise program.
If you have been diagnosed with EDS and are experiencing pain or loss of normal function, physical therapy can help! This article mentioned 8 different areas that a physical therapist can help aid in the rehabilitation with the diagnosis of EDS. Your doctor can refer you for therapy or most insurances will allow you to walk right into a physical therapy clinic without a referral! So give us a call at 814-324-0770 to start feeling better today!