We may not have a concrete answer to lead us to a "cure" if there even is one, but there are endless resources to help us assimilate to what we are dealing with.
What we know for sure across all syndromes of EDS is that our connective tissue does not always perform in the way it is expected to, which may or may not be he root cause to the way varying morbidities manifest themselves.
Our connective tissue is what presumably implicates the joint pain, chronic conditions, however varying in levels and intensities, multi-systemic dysfunctions, flare-ups, bouts of immobility or reduced mobility.
Muscles are comprised of various connective tissues, performing a multitude of structurally important functions. Poor muscle tone on any of these levels creates an instability. Any instability can alter the order of our individual biorhythm, theoretically toppling the jenga tower that is our skeleton, 206 bones, comprised of millions of potential health hazards and hiccups.
If we instead focus our attention for a moment to the possibility that if you start with a structural foundation (skeleton), the buildings (bones), wings (organs), offices (cells), wiring (parasympathetic nervous system) all have a much better chance of performing at optimum capacity for a longer period of time.
Now, I wouldn't categorize any member of the EDS gang as being "retrofitted" for earthquakes. Some may not even have the ability to move certain limbs, body parts in any comfortable fashion.
I suppose coming from a relatively fit late adolescence I don't even feel like a functioning member of my own household if I'm not contributing in a physical fashion, I had a lot of hip pain in my early adolescence that diminished after I became physically fit. So I was active and my pain was manageable until my pregnancy. After I had my son My body lost its muscle tone almost immediately, which I didn't comprehend until I started my physical therapy.
I've said since the beginning, there has to be something I can do to help myself. Movement is such an amazing tool that everyone can utilize. I started doing yoga around the age of 11, and always did well with videos at home where I could set the pace and not feel pressured by the pace of others. After I got the official EDS label, and was advised not to do yoga not to overstretch my joints, I was devastated because I believed for a minute I wasn't going to be able to do the one conditioning I was sure would help me regain my strength. Then they said I could do pilates. I realize the movements and speed of pilates differs from yoga, however the point is both of these practices allow you to pace yourselves! I found the Hypermobile Yogi online after searching for strengthening poses and thought "of course!" I now realize how late I am to this game, but the point is, there is always a way. Even though this hurdle may not seem like the peak of mount Everest in the sense of urgency, but when you realize how interconnected our skeletal strength is to in relation to the frequency of issues related to our instabilities it's worth a shot at betting on yourself to win.
I suppose this is my way to advocate the intention on all of our parts to try and regain your physical strength. There are so many tools available for you to move in the privacy of your own home, so that you can listen to your body and stop whenever you need to.
Stregth/Flexibility/Health/EDS by EDS Wellness is on YouTube, Linked below. These "Just 5 Minutes" videos are convenient, private, and an amazing tool to help you regain your strength. You can also join the live classes on Facebookat https://www.facebook.com/EDSWellness/!