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3:39pm August 31, 2014

bittersnurr:

slashmarks replied to your post: “neuroflux replied to your photo: “I have a hard time explaining to…”:
Like I told my mother and she was like “EVERYONE can do that” and I assumed I’d misunderstood you but I’m still not seeing the weird thing. Maybe it is too fast?

No since 2/3 of the people replying see the weird thing I think it is just a matter of if it’s normal to you.

Like I said doctors for whatever reason don’t even pay attention to this, I think it’s because it comes in a “benign” kind where it’s not really painful or damaging.

But they usually continue to ignore it even if you complain about aid joints hurting so :’)

I tend to stick a foot behind my head when I want to demonstrate to anyone, why my joints are weird.  Because it’s sufficiently “WTF how can you possibly do that!?” that people get it pretty fast.  Or sometimes I’ll bend my thumb to my wrist, if I’m wearing clothes that make the foot thing hard (or risqué).  I don’t really know which one gets the more “OMG STOP THAT” responses, the foot or the wrist, but they both get a lot of them.

Oh and regarding the ‘benign’ version, even to get diagnosed with that you have to have some degree of joint pain.  I’m diagnosed with that, although it’s possible it’s actually Ehlers-Danlos type 3 that nobody’s bothered to diagnose adequately (and they still argue about whether BJHMS is really the same as EDS type 3, like they may just be the same thing anyway).  Because organ problems associated with connective tissue stuff seem to run in my family on my mom’s side, so it’s possible it’s actually EDS and not BJHMS.  But either way, to get diagnosed with BJHMS you do still need joint pain and other painful or damaging symptoms, not just flexibility.  At least under the Brighton criteria.  It’s only called 'benign’ because it doesn’t kill you, according to the guy who diagnosed me.  (He said that’s what 'benign’ generally means in medical terms.  Which was enlightening to know.  o_O)