I've said it before, and I'll say it again, flexibility (muscles) and hypermobility (joints) are not one in the same. Another major misconception in Ehlers-Danlos Syndrome (EDS) is in regard to stretchy skin. In 31% of cases, highly stretchable skin is not present. EDS actually results in a loss of tissue elasticity. Too many doctors are unaware of these facts, and the misconceptions are hurting patients.

As hypermobility goes up, flexibility can often go down. As is the case for me, muscles can tighten while attempting to stabilize hypermobile joints. Many with EDS, including myself, have extremely tight hamstrings, even in childhood, as the hamstrings try to protect the hypermobile spine and joints. Can EDS patients be extremely flexible? Absolutely. But, flexibility is not what doctors should be assessing when EDS is up for diagnostic consideration.

Want proof EDS is not about flexibility? My hypermobility is most obvious in my fingers. Why? Because the hand is unique in that the fingers have no muscles. No muscles to tighten means that my hypermobile joints have free reign to move excessively. Many of my other muscles are tight, so not only was my hypermobility not obvious, I also had no clue I was hypermobile. Go figure.

When my new primary care doctor fully examined me (that was a first!), he found every anterior (front) muscle in my body is loose, and every posterior (back) muscle is tight. Recent research has found this curious muscle presentation to be distinct to EDS patients.

Why the misconceptions?