Think marathon… not sprint, when trying to diagnose and treat a connective tissue disorder. (Large doses of patience and persistence are in order at all times.) – Jandroid
Category: About EDS
I know, you came here originally to learn about a connective tissue disorder called Ehlers-Danlos Syndrome. I originally came here to write about a connective tissue disorder called Ehlers-Danlos Syndrome after experiencing a massive onset “cascade” or storm of symptoms that got me diagnosed finally at 45 in 2012. But like Alice down the rabbit hole encountering
2017 editor’s note: I wrote this post in early 2016 a year before the new EDS nosology and diagnostic criteria were presented in March 2017, so some of the diagnostic information below is now outdated. E.g. the Brighton (with an “r” to be clear) Diagnostic Criteria are now obsolete, but the Beighton 9 pt scale
One of the most common comorbidities of Ehlers-Danlos Syndrome (and, no surprise) Mast Cell Activation Diseases is IBS, or Irritable Bowel Syndrome. Yes, we’re going to talk about our innards and toilet habits folks! This post is not for the squeamish. But then, life with EDS is not for the squeamish, and… this is a
I’m writing this post while listening to the replay of The Anxiety Summit produced by Food and Mood Gal Trudy Scott this week (June 16, 2016). And I am not surprised to find myself falling down yet another rabbit-hole, with yet more rabbit-holes attached! (Are you?) And unfortunately, I must say I’m finding anxiety, whether
Update February 7, 2017: Via The Ehlers-Danlos Society (aka “The EDS”) on Facebook the full new EDS nosology will be published on March 15, 2017. Meanwhile, some preliminary documents have been shared ahead of time, including one that talks about the new “framework” for recognizing and diagnosing the most common, hypermobile form of EDS. So,
Fasten your seatbelts and settle in with a snack again, you’re in for another long ride, smile. (I’ll try not to make it too bumpy!) Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio of issues we find comorbid in the Ehlers-Danlos community of any form of EDS (or the newly
You may have noticed I don’t give much dietary advice here. In fact, to this point, I’ve given virtually none. And this is for a very good reason: just like medications and just about everything else with Ehlers-Danlos Syndrome with a dose of Mast Cell Activation Disorder on the side (any flavor) among plenty of
… you haven’t fallen, but you still can’t get up.
… I have a low pain threshold, and feel loads of pain. I have very high pain tolerance. I just have much more pain than most.