Living with hEDS: Weakness and Loss of Control Over Legs

Have you looked into tethered cord? It’s common in EDS patients. And it causes lower leg weakness

I was also diagnosed earlier this year despite having symptoms for several years prior. Oddly, my symptoms also began to worsen after being diagnosed. I completely understand feeling a lack of full control over my legs.. my hips and knees tend to sublux or even just feel as though they fall out from under me. I don’t use crutches, but I do find myself kind of waddling along sometimes as my legs get heavy and difficult to move. I haven’t found much that helps these symptoms yet but it’s nice to see that there are others sharing similar experiences, especially when we seem to be so misunderstood!