What is Ehlers-Danlos?
Ehler’s Danlos Syndrome (EDS) is a group of inherited conditions that affect connective tissue. There are a few subtypes of EDS, the most common being hypermobile EDS which affects 80-90% of those with the condition. Being hypermobile means that these individuals have an increased range of motion at their joints. This increased range of motion contributes to musculoskeletal complications such as tendinopathies, subluxations and/or dislocations, scoliosis, and osteoarthritis. All of these musculoskeletal manifestations are diagnoses that we are more than capable to treat as physical therapists.
It is common for a diagnosis of EDS to take a while, as EDS can affect multiple body systems, such as the autonomic, cardiovascular, neurological, gastrointestinal, urogenital, integumentary, and immune systems. Often individuals with EDS have had a number of unexplained symptoms over the years that eventually make sense together with a diagnosis of EDS. The Beighton Scale is a hypermobility screen that is often used to assist in the diagnosis of EDS.
There are a number of considerations that we as physical therapists make when working with an individual with EDS. For example, fatigue is a common symptom. We are able to educate on activity pacing and assist in finding the proper dosage of exercise for each individual that will support them in becoming stronger while not over-fatiguing. Other potential symptoms that your physical therapist should be aware of including:
-Orthostatic intolerance (ex. hypotension symptoms when moving to an upright position)
-Headaches
-Joint, abdominal, and pelvic pain
-Nociplastic changes (changes in the way your body processes pain)
-Anxiety and/or depression
-Cardiac disorders
-GI disorders (may contribute to nutritional deficiencies that can impact energy)
EDS & Physical Therapy
In regard to the musculoskeletal symptoms related to EDS, this is where we as physical therapists can provide the most help. Hypermobile joints benefit from strengthening around them. Strength gains in those with hypermobile EDS typically take 3-4 months longer than those without. This means that it is crucial that you find a physical therapist who can support you in a long-term strengthening plan. We at MOTION RX are a great option, as we are not confined to requirements from insurance. This means that we can space visits out over a longer period of time and give you a solid strengthening program to work on at home or the gym, with open communication at any time.
In person visits are still important for you, as having a professional look at the way that you do your exercises can be crucial. Those with hypermobility often perform exercises at end-ranges of joint motion, because they can. However, having someone cue you to perform movements at more mid-range can assist with preventing irritation at the joint and surrounding tissues, keeping your body happy and participating in all your daily activities.