Does The Rare Disease EDS Plague Fibromyalgia?

Does The Rare Disease EDS Plague Fibromyalgia? – February 23, 2018 – By Celeste Cooper

hEDS = EDS hypermobile type, previously known as EDS type III or joint hypermobility syndrome.

According to the National Organization for Rare Disorders (NORD), there are many Ehlers Danlos Syndromes and related disorders caused by different genetic defects in collagen. We will focus on the most common type of Ehlers-Danlos syndrome in this article.

this type of EDS can co-occur in fibromyalgia and myofascial pain syndrome even though it is thought to be a rare condition. Fibromyalgia and EDS also share connections you might not have considered. 

The EDS Connection

Gastrointestinal problems are noted in both hEDS and fibromyalgia, and myofascial pain syndrome has been noted in both hEDS and fibromyalgia.

A 2014 study, A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients with Gastrointestinal Symptoms, found upper and lower GI symptoms increased with the severity of joint hypermobility type.

Upper GI symptoms were dependent on autonomic and chronic pain factors.

A 1993 study published in the Annals of the Rheumatic Diseases suggests there is a strong association between joint hypermobility and fibromyalgia in schoolchildren and joint hypermobility may play a role in developing fibromyalgia.

I feel like this is what happened to me: the stress on my body and mind from undiagnosed hEDS caused excessive cumulative stresses which then may have led to Fibromyalgia.

Keep in mind, in 1993, few understood the incidence of myofascial pain syndrome in chronic pain conditions, which could be true in this case.

In 2013, a French study, Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?, reports some patients suffering from fibromyalgia present with clinical signs and

  • alterations in tissues,
  • changes in antibodies that test for certain markers found in tissue, and
  • alterations to the microscopic structure of skin that is similar to hEDS.

They also suggest some types of fibromyalgia could represent undiagnosed joint hypermobility.

A 2017 case study highlights that patients with EDS type III [hEDS] may suffer from pain due to myofascial trigger points around the affected hypermobile joints, not a surprise to me. I have been writing about this for years.

Myofascial pain syndrome is a chronic pain condition caused by myofascial trigger points and it appears to perpetuate pain in both fibromyalgia and hEDS.


Symptoms may vary, but there are general symptoms. Don’t be surprised by the number similar to fibromyalgia and/or myofascial pain syndrome. 

  • Loose, unstable joints prone to injury
  • Easy bruising.
  • Dysautonomia
  • High and narrow palate with teeth crowding
  • Small fragile blood vessels
  • Velvety-smooth skin which may be stretchy
  • Abnormal wound healing and scar formation
  • Low muscle tone and weakness
  • Muscle and joint pain
  • Joint pain associated with exercise

I, like so many others, was diagnosed with Fibromyalgia years before my eventual discovery of EDS because there is so much overlap in the symptoms.

The difference was that I could trace many of my symptoms back to childhood. I insisted that there must be another reason for my pain, but the doctors insisted I had fibromyalgia in any case.

Only when I discovered Ehlers-Danlos Syndrome and documented every symptom from birth onwards did it become clear what was going on. To this day, rheumatologists still insist I *also* have Fibromyalgia, even though all my symptoms can be explained by EDS.

However, I agree with this article that many people with Fibromyalgia may have EDS. The distinguishing characteristic is that we are not born with Fibromyalgia, so having “weird” childhood symptoms point to EDS.

Ms. Cooper lists some of the more specific and peculiar symptoms of EDS:

  • Headaches caused by resulting Arnold-Chiari malformation (noted in some FM patients)
  • Not knowing where body parts are in relation to space, loss of proprioception
  • Difficulty processing information rapidly
  • Functional gastrointestinal disorders, such as delayed stomach emptying, inflammation of the stomach, and irritable bowel syndrome
  • Vascular skin conditions, such as Raynaud’s and skin mottling due to a sympathetic nerve response known as livedo reticularis

What about you?

I have gotten myself into some precarious positions that result in pain, and like fibromyalgia, I can’t always predict when that will happen. I continue to struggle with the effects.

Whether joint hypermobility is benign (without genetic markers) or genetic (as seen in hEDS), it is not without consequences.

The future

We need more research on this connection. Folks can’t seem to agree on diagnostic criteria or terms for hEDS or fibromyalgia, which is extremely confusing and frustrating.

You can find more information on Ehlers-Danlos Syndromes at NORD, and the NIH, Genetic and Rare Diseases Information Center (GARD).

Author: Celeste Cooper, RN, is a frequent contributor to ProHealth. She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four-book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography.
You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at

Original article: Does The Rare Disease EDS Plague Fibromyalgia?

3 thoughts on “Does The Rare Disease EDS Plague Fibromyalgia?

  1. Pingback: Could your Fibromyalgia Actually be Ehlers-Danlos? | EDS and Chronic Pain News & Info

  2. Pingback: Management of chronic pain in EDS – part 2 | EDS and Chronic Pain News & Info

  3. Flutterby

    Reblogged this on Flutterby's Rantings and Ravings and commented:
    I’ve never had hypermobile joints – in fact, I had to drop out of ballet when I was in second grade because I would have needed double lessons so they could stretch my short tendons and ligaments (my parents couldn’t afford that). I do have hip dysplasia in the right; sitting on the floor cross-legged, my left leg is on the floor while my right knee is about a foot and a half above the floor.

    Anyone out there who has had symptoms since childhood but NO hypermobility?



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