Introduction to EDS for Fibromyalgia Patients

Picture of Jan

Jan circa 2010

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

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5 Responses to Introduction to EDS for Fibromyalgia Patients

  1. Darla says:

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    • Jandroid says:

      Thanks, so glad you enjoy my content. Yes, feel free to subscribe and follow my RSS feed or by email. And share far and wide with proper attribution thanks. Cheers – Jan

  2. Amy says:

    I am one of those who was very stiff even as a child and yet fit all the other EDS criteria. I was initially misdiagnosed with Fibro but soon began to realize that didn’t seem to be right. It was Dr. Bravo’s site that made me think EDS was an answer. No one in my area would diagnose me because of not being bendy, so I traveled all the way across the U.S. to Dr. Francomano, who was able to recognize all my other symptoms and diagnose me. Since then, I’ve noticed more and more doctors are realizing what you and I know–you don’t have to be bendy to have HEDS.

    Also, I have ME/CFS and I suspect many of us do. Renowned expert Dr. Peter Rowe believes ME/CFS can cause abnormally stiff tendons, which I suspect can mask the symptoms of EDS. My joints still sublux and sprain extremely easily, yet my fingers don’t even have normal laxity, much less hypermobility. I believe that I might well be hypermobile if I didn’t also have ME/CFS.

    • Amy says:

      Oh and as for the fibro vs. EDS, I agree with you. I have done a lot of research and talked to tons of patients and have come to believe that fibro is a collection of symptoms, not a specific illness. For many, finding their food allergies or getting treated for heavy metal poisoning and such will significantly help or cure them. I was in a study overseen by Dr. Bennett at OHSU (Oregon Health and Science University) who had fibro patients remove excitotoxins from their diet. Seventy-five percent of them significantly improved. I’ve seen enough other studies that I’d agree with that percentage of patients being able to find a healthy lifestyle that stabilizes them.

      I believe the other 25% or so were misdiagnosed and really have EDS or other things like MS or Lupus. So yes, I echo you–if you get diagnosed with fibromyalgia, keep digging. That likely is not the end of your medical journey.

      • Jandroid says:

        Of course I’m glad you agree! I like to say dogs don’t bark for no reason – our bodies don’t either (bark/hurt). And I agree there can be multiple causes.

        Interesting note about the ME/CFS possibly causing stiffness though! Hmm… now wondering why that might be… thanks for sharing!

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