Ehlers-Danlos Syndrome (EDS) and Hypermobility Disorders

Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue disorders causing a defect in the structure of the body’s collagen. This results in varied presentations depending on the subtype and which type of collagen is impacted. Most of the types are characterized by joint hypermobility, which include stretchy skin, tendons, ligaments, blood vessels, internal organs and bones. There are currently 13 subtypes recognized by the Ehlers-Danlos Society, however, they are discovering even more, rarer subtypes, that may be included in the future.

All subtypes except for the most common hypermobile subtype have an identifiable gene and correlating blood test. Those types can be definitively diagnosed, whereas the hypermobile type is diagnosed by clinical criteria and exclusion of any other possible rheumatological or connective tissue cause. The gene hasn’t been found yet, but hopefully it will be found sometime in the near future.

Hypermobility Spectrum Disorders (HSD) are some of the disorders related to joint hypermobility. When patients do not meet the criteria for hypermobile EDS (hEDS), a patient is diagnosed with HSD once every other possible cause is ruled out. HSD is often misunderstood and should be treated with the same validation as EDS.

A comprehensive and individualized approach to therapy is recommended for all patients with EDS or HSD. A physical therapy plan of care is determined during a thorough evaluation and then implemented alongside with consultation with a patient’s multidisciplinary care team. Physical Therapy treatment for patients with hEDS and HSD can help with:

  • Pain relief by providing soft tissue work, dry needling, manual therapy and muscle energy techniques, electrotherapy, and other therapies.
  • Chronic headaches, jaw pain (TMJ).
  • Joint instabilities, subluxations, dislocations, and misalignment.
  • Functional limitations, gross or fine motor
  • Balance and coordination
  • Postural Orthostatic Tachycardia Syndrome (POTS)

Therapy may consist of postural re-education, muscle strengthening, balance and stability training, self-care techniques, manual therapy, dry needling and soft tissue mobilization, therapeutic exercise, taping or bracing, and physical therapy modalities.

The most recognized symptom of hEDS is joint hypermobility with symptoms of musculoskeletal pain and complications of joint instability such as recurrent subluxations or dislocations. The disorder also comes with a host of associated co-morbidities, such as dysautonomia, gastrointestinal dysfunction, and mast cell activation disorder to name just a few. As physical therapists, we focus on the musculoskeletal dysfunction, but know about each client’s medical history and how it plays a role in the overall care of the person.

At Fast Track Physical Therapy, we listen to your individual needs and your unique differences to develop an individual plan of care for hEDS and HSD.

What You Should Know About hEDS and Hypermobility

It can sometimes take years to correctly diagnose hEDS. Symptoms can vary widely between patients, and the severity of symptoms might be vastly different from one person to the next. Symptoms may also change with age as the pain from hypermobility and instability is exchanged with stiffness and joint degeneration.

The Beighton Score, shown here, is the most well known criterion for assessment. Many factors are taken into account, such as skin hyperextensibility, atrophic scarring, dental crowding, velvety skin, positive family history, and many more.

If you have any suspicion that you might have a hypermobility syndrome or connective tissue disorder, find a specialist. Though there is yet to be a “cure,” physical therapy remains the staple of treatment.

Here at Fast Track Physical Therapy, we have taken the time to learn about the unique symptoms and how to care for a client with hEDS. Although some patients with hypermobility may have had unpleasant experiences due to lack of knowledge with their condition while being treated by a physical therapist in the past, you can rest assured that you are in good hands with us!

Hypermobility means the joint moves beyond a range that is normal and is a primary feature in both hEDS and HSD. Joint hypermobility is often a primary cause of pain, physical trauma, and the potential decrease in the ability to function. Most often, this excessive movement causes:

  • Instability, because the ligaments that provide stability to the joint are too loose
  • Microtrauma, which is small tearing or bony degeneration that can happen over time because of excessive movement
  • Macrotrauma, which are more recognizable injuries like when your kneecap moves out of place or the ankle sprains when you trip
  • Acute Pain- after injury or dislocation
  • Poor coordination or unstable balance
  • Generalized, chronic pain that comes with time

Physical therapists are in a unique position to help clients with joint hypermobility. They use techniques that include bracing recommendations, taping, neuromuscular re-education, posture retraining, gait training, strengthening, and pain management techniques.

Link to EDS website:

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