Ehlers Danlos Syndrome (EDS)
Treatment & Therapy
Ehlers Danlos Syndrome (EDS) is a group of disorders that affect the connective tissue throughout the body. Clinically, this commonly presents as joint hypermobility. However, there are several comorbidities and associated diagnoses that are frequently observed in patients with EDS.
I've been fortunate to work with many neurosurgeons, pain management specialists, dentists, physical therapists, and most importantly patients who have taught me a great deal about the management of EDS. That being said, every patient is unique and requires a very individualized treatment plan. At my clinic, one-on-one care is essential to making this possible.
Resources from EDS Society
Physical therapy is a key component of managing joint hypermobility for those with Ehlers Danlos Syndrome. Unfortunately, many patients I have worked with have been injured or caused more pain by working with a physical therapist. Often this is due to a lack of experience or knowledge from the treating therapist.
Ehlers Danlos Syndrome & Hypermobility
I have been fortunate to work with some of the most EDS-knowledgeable physical therapists in the country while at Bethesda Physiocare. This mentorship has allowed me to integrate the same principles into my Severna Park office. During my career as a PT, I have worked with many patients with EDS, all of which who have helped me learn the nuances of managing the many associated diagnoses that come along with joint hypermobility.
In my experience, the following conditions should be assessed for those who have Ehlers Danlos Syndrome:
Neck Pain/Headaches: Cervical Instability, Chiari Malformation, Eagles Syndrome, Myofascial Trigger Points (SCM, Upper Trapezius, Suboccipital), TMJ, POTS,
Shoulder Pain: Thoracic Outlet Syndrome, Peripheral Nerve Entrapment, Multidirectional Instability, Labral Tears, Clavicle Subluxation, Myofascial Trigger Points (Infraspinatus, Subscapularis)
Elbow Pain: Ulnar/Radial Nerve Entrapment, Myofascial Trigger Points (wrist flexors/extensors, Triceps),
Thoracic Pain: Scalene Trigger Points, Cervical Facet Irritation, Rib subluxation, Tethered Cord Syndrome
Lower Back Pain: SI/Pelvis Instability, Pelvic Floor Weakness/Dysfunction, Lumbar Facet Irritation, Lumbar Instability, Tethered Cord Syndrome
Pelvic Pain: Endometriosis, Tethered Cord Syndrome, Abdominal Trigger Points, Prolapse, Tarlov Cysts, Pelvic Floor Weakness/Dysfunction, Mast Cell Activation/Hormone Imbalance
Hip Pain: Labral Tear, Pelvic Floor Dysfunction, Trigger points in hip muscles or lower back muscles, Lumbar Disc Irritation, Pelvic Instability, Psoas Tendon Irritation
Knee Pain: Patellar Instability, Quadriceps Trigger Points, Fibular Nerve Irritation
Ankle Pain: Chronic Instability, Peroneal Tendon Irritation, Tarsal Tunnel Syndrome, Trigger Points in Intrinsic Muscles
Cervical Instability and Ehlers Danlos Syndrome: A Physical Therapy Perspective
In patients with Ehlers Danlos Syndrome, neck pain and headaches can be related to underlying cervical spine instability. Cervical instability usually corresponds with additional symptoms such as nausea, dizziness, vertigo, extremity weakness and lack of coordination, extremity numbness/tingling, difficulty swallowing, and/or episodes of fainting. Diagnosing cervical instability requires a neurosurgery consultation to access specialized imaging including a flexion/extension MRI, rotational CT scan, and possibly digital motion x-ray (DMX). From a physical therapy perspective, instability usually falls into one of the following categories:
Pathological (structural) Craniocervical/Atlantoaxial Instability:
These cases demonstrate abnormal findings on imaging and also meet clinical criteria suggestive of cervical instability. These patients generally do well with surgery and appropriate post-operative physical therapy.
Functional Cervical Instability:
Patients who have hypermobile cervical spines and some clinical manifestations of cervical instability, but have normal or just slightly abnormal findings on imaging. Usually, these patients also have a history of trauma, abrupt lifestyle change, growth spurt, or the presence of repetitive stress. These patients do well with appropriate physical therapy focusing on cervical spine strength/endurance, vestibular function, and ocular training.
Acute Subluxation or Malalignment:
This is a more debatable form of instability that I have only seen occur in patients with EDS. There is little to no research in this area, however, it is something I have seen in clinical practice. Trauma (which can be as little as a slip and fall or bumpy car ride) can cause an acute shift that can create severe pain and neck restrictions. If diagnosed appropriately, these cases can respond well to an appropriate muscle energy technique or mobilization.
Hip Labral Tears in Ehlers Danlos Patients
Due to increased joint mobility of the hip, patients with EDS are often prone to tears of the labrum. The good news is that a properly trained physical therapist can help prevent the need for surgery. In fact, many times surgery is not a good option due to the high likelihood of re-tear in those with EDS. Many times the labrum may not even be the source of the pain! Several quality studies have shown as much in active individuals. Let's take a look at some of the common reasons someone may have pain when diagnosed with a labral tear:
Psoas Tendinopathy: As the psoas tendon crosses the hip joint it is prone to becoming sensitive and intolerant to loading. Proper diagnosis and progressive loading plans are essential to the management of these tendinopathies.
Trigger Points: In an attempt to create stability in a hypermobile hip, many patients develop trigger points in patients around the hip and pelvis that can lead to increased pain. Some of these muscles include the quadratus lumborum, glutes, piriformis, quadratus femoris, TFL, and sartorius to name a few.
Pelvic Floor Dysfunction: Several muscles of the pelvic floor can also lead to referred pain in the hip region associated with pain from labral tears.
Motor Control and Strength Impairments: A decreased ability to absorb and control forces through the hip joint can contribute to repetitive stress and sensitization of the hip joint.
Physical Therapy, Ehlers Danlos Syndrome and The Muldowney Protocol
As a physical therapist that works with patients who have hypermobility, I am often asked my opinion of the Muldowney Protocol. My thoughts are it is just like any other treatment program or paradigm, it works for some and not for others. A few times I have been humbled by how helpful the program was. Other times, using this program would have been frustrating and held patients back from desired and more effective ways of exercising. When deciding if someone is appropriate for this protocol it is necessary to perform a thorough evaluation and then discuss the pro and cons:
1) Very thorough and deliberate progressions
2) The structure is easy to follow
3) Promotes progressive loading and strengthening
4) Is usually very safe when starting from the beginning
1) Incorporates outdated and non-evidenced based biomechanical explanations of pain and hypermobility
2) Can be too structured and rigid for some
3) Relies on an internal focus of control which can be harmful, or at least less effective for some
In my clinic, I usually incorporate a few principles of the protocol when working with someone who has significant hypermobility. However, I ultimately like to progress to more evidence-based (sets/reps for strength adaptations) and externally focused exercise prescriptions thereafter.
If you are struggling to manage your EDS symptoms and would like a plan, make an appointment, and let’s figure it out!