At Bethesda Physiocare, we often evaluate patients who demonstrate signs and symptoms of Ehlers Danlos Syndrome (EDS). While it may be unsettling to find out you have a chronic connective tissue disorder, it can also be the first step towards managing your health and addressing many undiagnosed symptoms.
One of the first things to consider is to seek a true diagnosis from a clinical geneticist. Even if you are convinced to have EDS and don’t want the hassle of an additional medical appointment, there are several reasons you may want to reconsider. A proper geneticist can not only make a diagnosis but can assist with being your “health coordinator”. This can involve appropriate referrals to specialists who can manage the various conditions associated with EDS (Dysautonomia, Mast Cell Activation Syndrome, etc.). They can also assist in screening for red flag neurological symptoms including Cervical-Cranial Instability (CCI), Chiari Malformation, or Tethered Cord Syndrome.
After medical management is in place, it is imperative to begin a proper exercise regimen and physical therapy when necessary. Just because you have hypermobility does not mean you are doomed to a life of fragility. After all, the majority of Cirque du Soleil performers all possess hypermobility traits. Patients that can maximize fitness and replace length with strength, are more resilient and less injury-prone. It can be tempting to stretch because of a perception of tightness. However, stretching usually puts more stress on the joint capsule and ligaments and rarely addresses the underlying cause of the muscle tightness. Typically when a patient builds a baseline of strength the tightness will decrease.
The key to training is to find a safe place to start training and gradually progress. This usually involves starting in shortened ranges of motion and moving closer to end ranges as strength improves. Additionally starting with global movements, closed chain, and proprioceptive exercises are preferred before adding higher amounts of external weights. Building these connections and underlying strength becomes the “glue” to hold joints stable. At Bethesda Physiocare & PhysioFitness we specialize in externally-focused exercise, an evidence-based approach to achieve quicker improvements with motor control and strength.