Introduction to EDS for Fibromyalgia Patients

Picture of Jan

Jan circa 2010

Update May 3, 2017: The old references to the BRIGHTON (with an “r”) Diagnostic Criteria in here were OBSOLETED by the brand new 2017 Ehlers-Danlos Syndromes nosology and diagnostic criteria, the first in 20 years!

These were introduced March 15, 2017 by the international Ehlers-Danlos Society after several years of hard work pulling experts from all over the world together to do so.

Please refer to those instead now to learn to recognize and diagnose both all of the forms of EDS now, as well as the BRAND NEW DIAGNOSTIC CATEGORY since March 2017 (into which many with fibro may well fit) of Hypermobility Spectrum Disorders that was just introduced for those who are not quite bendy enough to be diagnosed with hypermobile EDS now. (Be sure to rule out any other HCTDs like Marfan or Stickler’s Syndromes and OI too.)

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May 2017: I just deleted that video since it now reflects outdated diagnostic criteria.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 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.

This old article from France also recognized how fibro may be an underdiagnosis of Hypermobile type EDS: Fibromyalgia: an unrecognized Ehlers-Danlos Syndrome hypermobile type? Hermanns-Le et al 2013. And Dr. Jaime Bravo in Chile even agreed with me in his When To Suspect paper he shared with me in 2012. And still does – we continue to dialog by email periodically and have since the new nosology came out in March 2017.

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.

Please check out my When to Suspect and When Else to Suspect hypermobile EDS (and now Hypermobility Spectrum Disorders also) pages and talk to your doctors! And download the 18 diagnostic papers HERE before June 2017 if you haven’t yet before they go back behind a paywall.

Old 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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