Tag: fibromyalgia

How sleep can actually sometimes be hazardous to your health if you have EDS or HSD

Caveat: the following does not constitute medical advice, but merely education and illustration of one case. Talk to your doctors and other practitioners before starting or stopping any medical therapies, whether prescribed or over the counter. While there is no cure for the Ehlers-Danlos syndromes and the newly invented Hypermobility Spectrum Disorders (since 2017) yet,

This isn’t going to be a post on how specifically to diagnose the Ehlers-Danlos syndromes (EDS) or Hypermobility Spectrum Disorders (HSD) per se, as that’s already been covered here. Rather, I want to draw attention to the many “red herrings” or false leads that we and our doctors often identify and manage to recognize and

Hammer syndrome? Wait a minute Jan – you’re already talking about Hypermobility Spectrum Disorders (HSD), multiple Ehlers-Danlos syndromes (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) among other things. You could say you’ve put the “syn” in syndromes, don’t you think? So what’s “Hammer Syndrome”?? Good news: it’s not a disease

I don’t know how this doesn’t get more press or notice, but it’s become increasingly and glaringly obvious to me that all of the awareness raising around EDS, MCAD and “friends” (what I call the Chronic Constellation here) is almost exclusively being done by white people. And mostly women. Or at least that I’m aware

I’m writing this post ahead of what is likely to be a day of great change for many if not all in the greater Ehlers-Danlos community, if not the world (whether they all know it or not, smile). It is Monday March 13, 2017 as I type this, and we are all waiting on tenterhooks

“Homeo(stasis)… oh homeo(stasis)… wherefor out thou dysautonomia?” to mangle a phrase with apologies to all you brilliant Shakespeare scholars. And mix some medical metaphors to boot. Anyone who’s been exploring either the Hypermobility Spectrum Disorders (including the forms of EDS) or the highly comorbid Mast Cell Activation Diseases (all forms of mastocytosis, but also the

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,

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