Accordingly, please take the following with a grain of salt, and know that it is intended primarily to target those with the less rare form of EDS, hypermobile EDS or “hEDS” pimarily now, as well as the newly recognized forms of the Hypermobility Spectrum Disorders also.
Prior to March 15, 2017 we spoke of six main forms of EDS only, and some additional hypermobility syndromes (HMS, JHS, BJHS) which seemed to share a lot of overlap and confused everyone.
These have all been folded into either the newly sharpened EDS criteria, or the new categories of Hypermobility Spectrum Disorders for those who don’t meet the tightened diagnostic criteria for hEDS (the most common form of EDS by far) as of March 15, 2017 for any reason but exhibit a lot of the following issues just the same, indicating some kind of systemic connective tissue disorder, after all clear ones have been excluded. (E.g. OI, Marfan, Stickler, etc.)
The more rare forms of the Ehlers-Danlos syndromes are enough easier to suspect and diagnose (generally) due to their severity and/or distinct signs that they generally have less trouble doing so. Please consult The Ehlers-Danlos Society for more information on all forms (March 2017).
Anxiety, depression and Autism Spectrum (and ADHD now, 2021)
Allergies and sensitivities or MCAS (a form of MCAD)
But I keep finding so many additional common signs and symptoms that people exhibit, that I felt them worthy of another post so am hatching this one.
Though let me be clear, many of these are actually common comorbidities still, and none of them is truly diagnostic alone. Just part of the trail of breadcrumbs I hope you find leading you to suspect and look further into connective tissue disorders (CTDs) including the newly recognized most common Hypermobility Spectrum Disorders, as well as the more rare forms of EDS and other CTDs like Marfan Syndrome, Sticklers, Loeys-Dietz and OI.
(If you do suspect one of these conditions, check out my Diagnosing EDS and HSD page for some tips on going about it with your doctors and start gathering family history to that end.)
However, rather than expounding on the signs I’ll just list them with a few links where able to outside sources about them.
Again, because this is a systemic condition the myriad ways it manifests are rather mind-boggling in number and ultimately limitless: they affect the whole body in some way or another. This seems to be what makes it so hard for doctors to identify the condition prompting some wise anonymous person to quip:
If you can’t connect the issues, think connective tissues – author unknown*
*If you know the author, please tell me so I can give proper credit! And no it’s not Dr. Heidi Collins– she said she doesn’t know either. She just quoted them too! (She says so in her 2014 talk of the same title at the EDNF Conference.)
The thing is, most doctors have only been told about or possibly only remember the grossest signs of the rarest types (of EDS and all HDCTs) for the most part, so many of us with less hypermobile or gross types keep getting missed still. Why I’m writing!
Anyway, on with the unofficial and incomplete list. And if you find yourself checking off more than not, I would highly suspect you! Last updated 11/20/21
Postive Gorlin’s sign (ability to touch tip of tongue to nose, yes I think this case has EDS, natch)
Standing on the sides of your feet as your ankles roll easily in, or out – pronation, anti-pronation
Severe myopia (near-sightedness) and or astigmatism
Nystagmus or repetitive uncontrolled eye movements (magnesium may help)
Chronic Blepharitis or eyelid infections (likely from Selective IgA deficiency, part of commonly comorbid CVID)
Weak, crowded or cracked teeth (low Vitamin D contributes to the latter)
Peg teeth, or abnormal shaped teeth or microdontia
Receding gums that easily bleed even with good hygiene (Vitamin C can help this)
Sensitive teeth – this can come on as your ligaments loosen. (Mine tightened up and the sensitivity resolved with Vitamin C therapy yay.)
TMJ and all forms of jaw deformities, but especially high palate & crowding
Stretchy skin, ability to flip eyelids up (and freak out younger siblings)
Contortionist ability, or extreme flexibility in gymnastics or acrobatics
Injure in your sleep easily. Have to adjust, reset or tape up joints upon waking and getting up. (Shoulders and hips go out easily if you side sleep. Also trouble sleeping on your back due to obstructive airway apnea from floppy tissues no matter your size.)
Weak ankles, trouble wearing high heel shoes, strong pronation or anti-pronation
Trouble swallowing (can have both neurologic and allergy-type drivers)
I’m stopping here for now, but will periodically add to this list. Many of these were already listed on the common comorbidities page, but I’m trying to add signs that in themselves are not full comorbidities, but just signs we find common in EDS and HSD patients. Alas, I’ve caved and ended up adding/sharing a couple that are driven by one of our most common comorbidities I find: MCAD.
And I will re-iterate that though many patients are quite flexible or “bendy”, and some even extremely so, NOT ALL are very or even at all “bendy” or flexible! So do not consider yourself exempt just because you are not, sorry. Many of us stiffen with age and early onset arthritis, and some, like Dr. Jaime Bravo a leading rheumatologist in Chile with EDS himself told me never are in 2012.