What is EDS?
Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder with 13 subtypes, the most common being hypermobile EDS (hEDS). Characterized by severe joint laxity, frequent dislocations, and chronic pain, EDS presents unique challenges for bodywork. Traditional massage techniques focus on releasing tight muscles. However, in EDS patients, that muscular tension is often a necessary defense mechanism holding hypermobile joints in place. Fully releasing these compensating muscles can destabilize the joints, increasing the risk of dislocation and worsening long-term pain.
What should we do instead?
EDS is a disorder of the connective tissue, not the muscular system. In EDS, the deep front line (the body’s largest Myofascial network), becomes overburdened and begins to thicken as a compensatory measure. Over time, this leads to a stuck posture and chronic pain as the fascia does its best to fight gravity and keep the body upright. By doing a postural analysis to find where the deep front line has compensated, we are able to create a plan for deep connective tissue work that will bring lasting results rather than temporary relief.
Cervical Instability
In EDS, the C1-C2 joint (The atlas and axis) will become unstable. While the occipital muscles may become tight around this area, it is a contraindiction to release them. The atlas- axis joint is one of the most important due to the proximity of the brain stem. Releasing the tight muscles and allowing more laxity in the joint can cause a cascade of other issues that can worsen EDS symptoms. We can relieve pain in the area instead by working the deep neck flexors and hyoid muscles to take tension off of the back of the head.
Things to Consider
Many people with EDS, also have co-morbid conditions. Postural Orthopedic Tachycardia Syndrome (POTS) is commonly seen alongside EDS. This condition is marked by autonomic dysfunction that creates heart rate, temperature regulation, and digestive challenges. During sessions, it is important to check on temperature and hand positions to make sure blood is flowing correctly to all extremities, as to avoid numbness in the client. Deep work can cause dizziness or vertigo in those with POTS so it is imperative to communicate with the client to ensure comfort and safety.
Mast cells are immune cells that congregate heavily in connective tissues. Many with EDS have immune system dysfunction that creates allergies and can be easily aggravated by heavy work. It is important to check for known allergies before the session to avoid any immune system activation from lotions or environmental factors. In addition, the “low and slow” approach to connective tissue work is the best approach to avoid flare-ups and to gently coax the nervous system into allowing deeper work.