undiagnosed, & still living
Every since I was young I remember having to "pop" my joints to make them "feel better". I also complained a lot about joint pain and was mostly laughed off by my parents and friends. Flash-forward, I'm now 31 and my symptoms have gotten much worse. I have two beautiful children that I pay for every day (and glad to do it). I just wasn't expecting life after kids to be so challenging, physically. If I do too much, my joints hurt. My hands are so weak I can't do basic things like using a spray bottle or holding a bush too long without my hand or arm.. maybe both feel like they're going to fall off. I swear, I'm not a dramatic weak girl, though my doctors seem to think so, because (& I quote) "you're too young and pretty to be sick". It's been impossible to get anyone to take me too seriously. So, I've stopped chasing doctors and started working out. I think I have a secondary condition called POTS and it made me workout intolerant, but I FINALLY pushed through that and have been slowly but steadily building muscle (which I'm proud to say, I'm not the only one who can tell now). Building muscle around my joints is the best way to keep them from coming out of place since EDS is a collagen issue..... Mine isn't as strong as a normal person, so even though EDS can go undetected for a long time, it gets worse with age, because your body stops making as much collagen. While your young, you make more and can't really tell it's not as strong as others. Unless you have a more serious version of EDS (there's 13) mine is the least dangerous and life-altering (hopefully) because though I'm diagnosed with Hypermobile spectrum disorder, I have not undergone testing for variant mutations, so I'm not positive of my "type". ( they haven't found the mutation for the hypermobile type of EDS.. which is the only one out of the 13 that has not been discovered yet.)
Anyway, I have a feeling my visual snow is linked, which could be a whole different kind of EDS. I have visual snow that has been getting worse since about the same time my EDS symptoms started getting worse. I went from not needing sunglasses, to not being able to go outside without them and the sun still bothers me. I'm also completely blind at night and constantly run into stuff when walking from a well-lit room, into a dark room. I use to be able to see pretty great at night but now I'm afraid to drive (it completely freaks me out).
Basically, I'm just hoping none of it gets worse because I can't bring myself to deal with any more doctors. I figure I'll live or die but I'll pass on feeling like shit about feeling like shit..... Ya know?
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