Symptoms of Ehlers-Danlos Syndrome 

What is Ehlers Danlos Syndrome (EDS)? 

Ehlers-Danlos Syndrome is a connective tissue disorder that usually affects collagen, making it stretchy. The severity and clinical presentation of symptoms can vary from person to person, but they most commonly cause hypermobility or “loose joints.” Learn more about the symptoms of Ehlers-Danlos Syndrome.

Diagnosing EDS / Different Types

There are currently thirteen different types of EDS, with hypermobile EDS the most commonly seen type. EDS can be inherited, but can also be seen in a person for the first time, without a family history. One of the primary tests that is performed when diagnosing EDS is called the Beighton Score. In practice, I have found that patients often have a hard time getting a diagnosis because providers are not familiar with EDS. Commonly, patients will get a diagnosis from a rheumatologist, but it can take years for them actually to be given the diagnosis of EDS. As you will see below, there are a variety of different symptoms of EDS, which are similar across the various types.

It is most common to see the symptoms of joint hypermobility along with dizziness, or POTS. POTS, Postural Orthostatic Tachycardia Syndrome, is a condition in which your heart beats faster than it should when transitioning from lying down to sitting or standing. This increased heart rate causes people to feel dizzy, lightheaded, nauseous, or can even cause them to faint. 

Common Symptoms 

    1. Joint hypermobility
    2. Easily dislocates 
    3. Joint pain
    4. Fatigue
    5. Easily bruised skin 
    6. Digestive problems
    7. Urinary incontinence
    8. Dizziness (POTS)
    9. Stretchy, smooth, velvety skin

Hypermobile Type Symptoms 

    1. Joint hypermobility
    2. Joint dislocations
    3. Joint pain
    4. Fatigue
    5. Skin that bruises easily 
    6. Dizziness
    7. Digestive problems
    8. Urinary incontinence 

Classical EDS Symptoms

    1. Joint hypermobility
    2. Joint dislocations
    3. Stretchy, velvety, fragile skin
    4. Poor healing from wounds 
    5. Scar easily 
    6. Hernias
    7. Organ prolapse 

When to Seek Help / How PT Can Help

Physical and Occupational therapists are trained to help patients with the diagnosis of EDS develop an individualized care plan based on their unique symptoms and functional deficits. Patients should seek the help of a PT or OT when they have difficulty completing daily tasks, feel weak, or are in pain. Typically, we will start by working to learn where the patient has pain and their goals. It is common to incorporate soft tissue mobilization along with gentle strengthening exercises to help decrease pain and increase joint stability.

It is important to progress slowly with the exercises to not cause increased pain for the patientIf there is a specific task that the patient finds difficulty or needs help developing ways to complete it, the therapist can offer suggestions as to modifications or the use of assistive devices. There are many options to choose from, and it can be overwhelming to decide which ones to use. Occupational therapists can fabricate custom splits or help measure for pre-fabricated splints to help patients avoid joint dislocations. Some of the common splints that patients with EDS use are, Oval-8 splints, CMC joint support, or a silver ring splint. Their splints are great for helping with hypermobility and allow patients to complete tasks without dislocating. If you have any concerns with increased pain and decreased overall function in your daily life, please reach out to a physical or occupational therapist for assistance. 

Adrienne Loukopoulos graduated from St. Norbert College with a bachelors of science with a biomedical concentration. She then pursued Occupational Therapy at Mount Mary University where she graduated with a Master’s in Occupational Therapy.