March 2015: I just uploaded the video of this talk to YouTube for my first time (whee, yay me) where you can see it now, no password required. (Thanks to Tamara’s husband for helping me procure the file and Tami Stackelhouse for inviting me and letting me share it.)
There’s about 9 minutes of introduction before I’m allowed to get going, but it’s worth the wait! No surprise, most of the room turned out to be even bendier than I am now (about 20 people), and some said they had even suspected EDS already.
I won’t go on record as saying all patients with Fibro have EDS, but I very strongly suspect a majority of them especially if they also have IBS and Multiple Chemical Sensitivity (which I think is really likely unrecognized MCAD we find so commonly comorbid with HEDS) and any kind of tendinitis or joint pain or trouble which all I met seemed to have.
Everyone who knows me knows I can’t emphasize enough how you do NOT have to be very bendy (score high on the Beighton with an “e” 9pt Hypermobility Scale only) to still pass the BRIGHTON (with an R!) Diagnostic Criteria for HEDS (aka HMS, JHS, BJHS elsewhere). This is a big red herring that turns myriads of patients and doctors away from a proper diagnosis! (You do not have to be bendy to have EDS!)
Many of us are either no longer very bendy as we’ve stiffened with age and arthritis (like me – I was a 9 up until my 30’s, am now a 2 at 48 yo), or never were like Dr. Jaime Bravo himself a leading rheumatologist in Chile who has EDS himself and says some of his patients never are. (I’ve since met one who completely fits this description -stiff even as a child, but has all of the issues that are so common to an EDS patient including fascial pain, easy bruising, headaches, dysautonomia, sensitivities, frequent infections, more – and flying bird hand sign.)
Further, everyone who reads it also misses the words “now or historically“ in the criteria, when reading them. Meaning, are you now or were you ever before a 5/9 or greater on the scale. Everyone stops short when they score below a 4, and fails to read the rest of the Brighton CRITERIA. (I find likely Aspie or ADD minds snap shut the fastest – leaping to conclusions long before they’ve finished reading all of the material!) And is why I’ve developed my unofficial Reverse BRIGHTON Criteria to help get our minds out of this B&W rut!
Update January 2016: And I forgot about this article from France also recognizing how it may be an underdiagnosis of Hypermobile type EDS: Fibromyalgia: an unrecognized Ehlers-Danlos Syndrome hypermobile type? Hermanns-Le et al 2013
Okay, nuff said, rant over! (For now, smile). I just can’t seem to emphasize this enough! 🙂 To your health – Jan & PB