Remember back a couple weeks ago when I mentioned my story started with a diagnosis?
Well, buckle up gorgeous! Cause we got another one! And by we, I mean me.
EDS. Ehlers-Danlos Syndromes, I’m hoping you got the s’ in that. I didn’t at first. According to The Ehlers-Danlos Society (I’ll be putting their link at the end of this post), there are 13 different sub-types of EDS. I haven’t been diagnosed with a sub-type just yet, though one is suspected.
I’m going to back up and explain what EDS is. It is a connectivity disorder as in joints, skin, various tissue, all those things which connect things in a body. Ehlers-Danlos Syndromes are genetic, there is nothing which magically happened to give someone EDS, though from my understanding, it can lie dormant until some kind of stressor activates the gene. Again, I’m not a doctor. This is all from what I’ve read, and talked to my doctor about. If you happen to know more, please share!
For me, EDS has been sneakily showing in different ways my entire life but if one doesn’t know much about EDS, then one isn’t going to suspect it. Especially since it looks like strange things such as hypermobility aka joints which stretch further then normal, skin that can stretch further then normal and fragile tissue. But no one person’s experience with EDS is the same as another. I want to make that clear. This is what I’ve experienced.
From a young age I could bend my fingers all the way back to touch my arm, my thumb down to touch my inner wrist. And I was fairly flexible. But after hitting puberty, one knee in particular started hurting…all the time. I was prone to injury and constantly sick. Something always wrong.
Fast forward to 2018, and my hip as well as some ribs decided staying in place was a stupid idea and were constantly jumping out of where they belonged. Other health issues followed.
And now (this is the super sped up version, simply because I’m becoming exhausted and won’t be able to type much more) after a year of tests, various more serious medical issues and ruling a ton of other things out. My doctor took a look at my medical history, and put the puzzle pieces together. Finally a diagnosis.
I’m pleased to finally know what’s going on, as I had begun to question my sanity. Its something I will need to learn to manage, but its not the end of the world.
If you have EDS or know someone who does, please feel free to share your thoughts or experience, even tips. I’m still new to all of it and learning to cope with much lower energy then before is trying to say the least.
I wish you good health, much joy, and little adventures.
Speaking Outloud 