Ehlers-Danlos Syndrome, Marfan Syndrome, Loey-dietz Syndrome : Genetic Connective Tissue Disorders
Hi! These conditions (which sometimes result in disability) are not listed.
I have Ehlers-Danlos Syndrome diagnosis, but they're trying to rule out Marfan.
Anyone else?
I have hypermobility syndrome. So painful. :'(
I'm hypermobile too and have cerebral tonsilar ectopia and tethered cordbecause of it. I think I spelled that right.
I know, right!?! I was at laser tag today (... I swear, I'm an adult!), and my hip popped out twice, my wrists twice, and my leg cramped up; I couldn't walk for a half hour!
Part of it was probably due to running around. But, still. ARGH and OUCH!
I have EDS. It's nice to find someone with similar struggles on here. =]
Hurty toe, and shoulder, keeping me awake. :(
What do you guys struggle with the most?
I get lots of pokey ribs, but mywrists constantly come out. It hurts SO MUCH, and it can really ruin my day.
My heart is so fast (and, my heart problem isn't super clear yet - I don't know if I have Marfan Syndrome instead), and I therefore get winded randomly walking. Had a tachycardic episode from swimming one length in the pool....but, was fine going for a jog one day? How annoying.
You guys?
HEDS SUCKS! That crap happens to me all the time! Anyone have herniated cerebral tonsils from this too? What about tethered cord? Yay I found zebras!
@gatheringroses42 Hey you might have something called costochondritis - it's inflammation around the ribs that makes them throb and feel really crummy. I get flare ups (especially when I'm ovulating and my estrogen levels are high). It hurts so bad! The first time it happened I thought I was having a heart attack or something. As for heart rate you might have POTS or othostatic intolerance. My heart rate goes up crazy when I have to change positions (laying to sitting or sitting to standing especially). Basically your heart rate goes way up to keep your bp up, because the blood isn't going to your extremeties fast enough. It's a total pain in the butt, but manageable with fludrocortisone and diet changes. POTS is especially common for people with EDS so you might want to have a tilt table test to rule it out.
@gatheringroses42 I had heart problems right around when I was being diagnosed (clEDS) and I was having a mitral valve prolapse. it's very common in people with EDS, especially classic, classic like, vascular, and hypermobile types. I would definitely get it checked out, even if it does end up just being costochondritis (not as big of a deal). it's never worth your life.
I have EDS, what doctors thought was hypermobilitytype at first but now it looks like I have the vascular type.
Does anyone else have the vascular type?
I have the hyper mobility type very painful and kills my hips and knees. Even pt makes it feel worse!
PT has really never helped me. I've gone to what feels like a million different people and each one makes me feel worse.
I feel your pain. Really the only pt that has ever helped me is massage therapy or mayofacial release therapy! Have you heard of those!
@CherriePie have you ever had your PT try the Graston method of tissue repair? I was trained in it to do it to my son . We all have EDS, which is common since its genetic.
My knees feel terrible all the time too, dude! I try biofreezing them to death but that's such a limited relief if any.
I have EDS, also.
Oh my goodness, I came on here in a last ditch effort to try and find someone to talk to with EDS and I finally found people who understand. I've been feeling utterly hopeless and my condition has worsened so much. I have arthrochalasia/hypermobility/classic types with a vascular crossover. I use a wheelchair most times now and am facing more surgery. This condition has really got me down more than ever lately, but I'm happy to find other zebras!
@KKSama loved you using the term Zebra! It's my calling card, lol. do you suffer from POTS as well? they often go hand in hand
Any other Chiarians?
I had chiari but I had an operation for it back in 2004, so it's not an issue now.
So glad that surgery helped for you! <3
