Question about hyperextensibility syndrome

So my doctor told me that I had hyperextensibility syndrome and fibromyalgia. I cant find anything on hyperextensibility syndrome and was wondering if it was just another name for EDS?

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Hello Champbear and welcome!

No, hyperextensibility syndrome is not another name for EDS. EDS can have hyperextensibility of joints and/or skin, but so can other conditions like Elastoderma (http://www.medicaljournals.se/acta/content/?doi=10.2340/00015555-1272&html= 1), Marfan Syndrome (http://www.brighamandwomens.org/Patients_Visitors/pcs/rehabilitationservice s/Physical%20Therapy%20Standards%20of%20Care%20and%20Protocols/General%20-% 20Marfan%20Syndrome.pdf), Cutis Laxa, and about 50 more conditions (http://www.rightdiagnosis.com/symptoms/hyperextensible_joints/common.htm)

I would suggest you find another doctor, preferably a genetecist experienced with diagnosing Connective Tissue Disorders (not all of them are) if you believe EDS is a possibility.

Diagnosis is done through examination. An EDS exam for diagnosis probably will include testing skin for what it feels like, how much it stretches; the Beighton Score http://www.hypermobility.org/beighton.php and/or the newer Brighton Score http://www.hypermobility.org/diagnosis.php for testing hypermobility, taking a look at your medical history to figure out what EDS symptoms you may have shown in the past and whether you inherited EDS. Your family’s medical history as far back on both sides is also considered during the assessment. It might also include an echocardiogram if heart or vascular issues are suspected, or other tests depending on the symptoms and doctor.

There are genetic tests for some of the types that can confirm a diagnosis, but can't be used to rule one out in most cases; if you don't test positive genetically, that doesn't mean you don't have EDS. We simply aren't sure of all the gene mutations yet. The exam for EDS is a good, thorough basic physical examination. Classic type has a test that catches more than 50% of cases; Hypermobile type has no test, although there's a possibility at least one of the causes has been identified (Haploinsufficiency of TNXB Is Associated with Hypermobility Type of Ehlers-Danlos Syndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1180584/ this is probably a cause of some forms of Hypermobile type). The test for Vascular type is 95+% accurate now; the rarer forms also have well defined tests.

Any doctor, really, can diagnose if they can know enough about how to assess the diagnostic criteria (for more look at http://www.ednf.org/index.php?option=com_content&task=view&id=1352&Itemid=8 8888970). They're not complicated. However, most people wind up at a geneticist's office because it's hereditary, or at a rheumatologist's office, because it's connective tissue (though most rheumatologists in the US seem to be about a generation behind their international peers in their knowledge of EDS.

There are some doctors who refuse to diagnose EDS because it's so rare—this is just bad logic; of course it's rare if no one diagnoses it because it's rare. Rarity of a disorder has nothing to do with whether or not it applies to you personally. You will find doctors who don't want to diagnose it because it's not curable. Remind them that even though it has no cure, the symptoms can be treated, and knowing you have a type of EDS gives you and your medical team some idea of where problems might come from and why they're happening; if there ever is a cure, at least you'll all know to use it; and the more of us who are diagnosed, the more likely it is EDS will get the attention we all need and the more likely researchers will work on finding a cure. Even knowing what type you have, your own case of EDS will be your own case; while knowing what might happen is helpful, you'll probably have only a subset of symptoms and not the whole set.

EDS is a collection of genetic collagen defects. Each type of EDS is defined as a distinct problem in making or using one of the types of collagen. Collagen is also the most abundant protein in the body, so effects can be wide-ranging in both location and severity. Collagen is what the body uses to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched but not beyond its limit, and then safely returns to normal. With badly built or processed collagen, some of the tissue in your body can be pulled beyond normal limits, causing damage. Collagen is the most abundant protein in the body and can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on. EDS is really pretty "invisible". Some of the effects can be seen, but not all. Pain, for instance, can be widespread—it's amazing how many places collagen is used in your body, including the fascia, the "Saran Wrap" that holds everything together and wraps around your entire body—but the pain isn't going to show up in MRIs or X-rays, and will be probably be out-of-proportion to anything they can find.

You can find the genetic tests off the NIH's main page for EDS genetics, http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome — the tests are identified in links at the bottom of the page.

For more information on specific types from NIH, also check out

• Ehlers-Danlos Syndrome, Classic Type http://www.ncbi.nlm.nih.gov/books/NBK1244/

• Ehlers-Danlos Syndrome, Hypermobility Type http://www.ncbi.nlm.nih.gov/books/NBK1279/

• Ehlers-Danlos Syndrome Type IV Vascular http://www.ncbi.nlm.nih.gov/books/NBK1494/ and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1971255/

• Ehlers-Danlos Syndrome, Kyphoscoliotic Form http://www.ncbi.nlm.nih.gov/books/NBK1462/

• COL3A1 haploinsufficiency results in a variety of Ehlers-Danlos syndrome type IV with delayed onset of complications and longer life expectancy http://www.ncbi.nlm.nih.gov/pubmed/21637106

Here are a couple of EDNF publications that might help:

What is EDS? http://www.facebook.com/note.php?note_id=10151543135885657

Pain, Physical Therapy, and Pain Management 2012 http://bit.ly/J9vZ8W

"So You Think You Might Have EDS?" http://www.ednf.org/index.php?option=com_content&task=view&id=1777&Itemid=8 8889242

An over-view of EDS which points out a lot of the problems is Dr. Clair Francomano's "Ehlers-Danlos Syndrome Update 2011: What We Know—And What We Don't Know" presentation at the 2011 EDNF conference, http://www.ednf.org/images/2011conference/Handouts/Francomano_EDS2011_What_ We_Know_2slides.pdf

The Prevalence of Non-Surgical Complications in the Ehlers-Danlos Syndrome http://www.ednf.org/index.php?option=com_content&task=view&id=1256&Itemid=8 8889208

What is EDS? http://bit.ly/II6QDW

Ehlers-Danlos Syndrome http://www.ednf.org/index.php?option=com_content&task=view&id=1650&Itemid=8 8889208

What are the types of EDS? http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=8 8888969

The "EDS Guides" menu (on the left at http://www.ednf.org/index.php?option=com_frontpage and throughout the EDNF site) includes:
EDS in Practice: Pediatric and Adult Clinical Checklists
EDS Medical Resource Guide 2007
EDS Medical Resource Guide 2010
Dentistry Medical Resource Guide
Emergency Room/Surgery Booklet
Guide to EDS Child
Ophthalmology Medical Resource Guide
Pain Mgmt Medical Resource Guide
Pain & Pain Management 2012
Physicians Directory
Ritter Rules
Sports Poster
Vascular Medical Resource Guide
Vascular Primer
VEDS Clinical Reference Manual
EDS Wallet Card

Gentle hugs...

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Hi Just thought i would say that here in the UK our expert professor Graham quoted that "Hypermobility syndrome and EDS hypermobility are considered to be the same condition. "what is now called on good evidence Benign Joint Hypermobility Syndrome (BJHS) and Ehlers-Danlos Hypermobile Type (formerly EDS III), which may be one and the same" http://www.hypermobility.org/whatishms.php

In America Brad Tinkle recently quoted that "The Ehlers-Danlos National Foundation recognizes the hypermobility syndrome as the same as the hypermobile type of Ehlers-Danlos syndrome and would welcome those seeking support or information". http://hypermobilityhope.blogspot.co.uk/2009/09/dr-brad-tinkle.html

Unfortunately there is a lot of confusion about what the condition is called by many names Benign joint Hypermobility or hyperextensibility however the important word is syndrome. Once it is seen as the syndrome rather than just Hypermobility it becomes EDS

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Thank you for the information. I get to see my rheumatologist on Monday so I will just double check with him. I need to get information from him about what my limitations are since i am in the military and awaiting a medical discharge from all the joint pain and endometriosis stuff that I have been dealing with for the last 12 yrs.

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Well my doctor said that the hyperextensibility syndrome is a part of EDS. Thank you all for the info again.

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