Ironically, after all my pounding on that drum, they proceeded to ditch my favorite Brighton Diagnostic Criteria, and KEEP the much less preferred Beighton (with an “e”) 9 pt hypermobility score or scale and RAISE THE BAR OF ENTRY to being diagnosed with hEDS, sigh. But… the fact that they proceeded to introduce the new Hypermobility Spectrum Disorders is decent consolation and I’ll take it: they at least recognize that this condition (whatever is driving it) can fall on a spectrum as I wrote about here.
We just may not have all the answers as to why that is yet. I don’t care! Like the former planet Pluto, who was re-classified to a dwarf planet in 2006, I haven’t changed a spot, nor stopped “orbiting” the “hypermobile sun” so to speak. I.e, I don’t care what you want to call what I have! hEDS or H (for “historic” in my case) – HSD. So long as I get proper medical treatment and support for it. I will be removing my video of the talk below for this reason: since it no longer reflects the new diagnostic scheme and information.
But I won’t stop suspecting most patients with fibromyalgia!
Original text from 2015:
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.)
May 2017: I just deleted that video since it now reflects outdated diagnostic criteria. I’ll try to share another some day.
There was about 9 minutes of introduction before I was allowed to get going, but it was 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 stronglysuspect 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.
May 2017: Be sure to look into the Hypermobility Spectrum Disorders now also/instead! This allows for varying levels of hypermobility, including some who are not very bendy at all for a variety of reasons. (I myself am stiff with age, hypermusculature and arthritis at 50, when I used to rival these ladies or Sofie Dossi in my youth – minus the hand balancing, no joke.) I will no longer refer to the Brighton Diagnostic Criteria as I did before as they were obsoleted by these for hEDS and HSD. But careful students of EDS diagnostic history will notice that they were incorporated into the hEDS criteria to some degree. So they are not completely gone – just “re-mixed” if you will.