When Else to Suspect Ehlers-Danlos Syndrome – Term Life

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I wrote about my top five ways to suspect Ehlers-Danlos Syndrome over a year ago. These included:

  1. Fibromyalgia
  2. IBS
  3. Chronic Pain
  4. Anxiety, depression and Autism Spectrum Disorders
  5. Allergies and sensitivities or MCAS (a form ofMCAD)

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. 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. Again this seems to be what makes it so hard for doctors to identify the condition prompting some wise 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.)

Anyway, on with the unofficial and incomplete list. And if you find yourself checking off more than not, I would highly suspect you!

  • Postive Gorlin’s sign (ability to touch tip of tongue to nose, yes I think this case has EDS, natch)
  • Flying Bird Hand sign
  • W-sitting (don’t do it!)
  • Reverse Namaste or Namaskar sign (able to form the “Namaste” prayer pose with hands behind your back)
  • Severe myopia 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
  • Sensitive teeth – this can come on as your ligaments loosen. (Mine tightened up and resolved with Vitamin C therapy yay.)
  • Stretchy skin, ability to flip eyelids up (and freak out younger siblings)
  • Contortionist ability, or extreme flexibility in gymnastics or acrobatics
  • Weak ankles, trouble wearing high heel shoes, strong pronation or anti-pronation
  • Weak knees, loose patellas, hyper-extended knees
  • Thin skin that tears easily and any scars that widen or grow or move
  • Fallen or falling arches, or any related issues (neuromas, plantar fasciitis)
  • Easy bruising
  • Easy bleeding, trouble suturing, poor healing post surgery
  • Any amount of CSF leaks anywhere along the dura, but especially out the nose or ears (yes, this happens!)
  • Deviated septum
  • Crossed eyes or wandering eyes from lax eye ligaments
  • Bulging veins, varicose veins (especially early onset)
  • Venous insufficiency
  • Herniations or prolapses of any and all kinds
  • Easy or frequent faiting or dizzy spells (likely from comorbid POTS and dysautonomia)
  • Raynaud’s
  • Chronic constipation with quick flips to diarrhea (IBS) – already mentioned in first post
  • Lots of allergies of any kind
  • Chemical sensitivity, multiple chemical sensitivity (likely really a form of MCAD)
  • Insomnia and adrenal fatigue (as a result)
  • Sleep apnea, snoring, even in “thin” patients (weight doesn’t help, but we have weak laryngeal tissues)
  • Chronic headaches of almost any kind, including migraines
  • Chronic idiopathic (unknown origin) nausea
  • Bad handwriting, lax hand writing, trouble holding pens or pencils properly, need for pencil “grip”
  • Chronic or recurrent infections, get sick easily or often fighting candida and viruses (likely from CVID)
  • Chronic or frequent heart palpitations or fluttering, tachycardia (PVCs and POTS are common in us)
  • Chronic or frequent or multiple instances of tendonitis (aka tendinitis)
  • Bursitis, chondromalacia of any kind (loss of cartilage between bones of a joint, any joint, though usually knees)
  • Bone spurs (why this is true I don’t know, but it’s common in us)
  • Spinal stenosis
  • Easy flushing red (from MCAD)
  • Trouble swallowing from floppy laryngeal tissues and CCI and more
  • Hearing trouble from weak inner ear bones, weak tendons, or sensory processing disorder
  • Sensory Processing Disorder of any kind (including lack of pain in some lucky cases)
  • Poor temperature control (run hot or cold easily, usually cold)
  • Chronic fatigue (may be misdiagnosed as Chronic Fatigue Syndrome aka ME / CFIDS / SEID)
  • Fibromyalgia (already mentioned, and very very common, usually an under-diagnosis for HEDS)
  • EMF sensitivity – and tendency to “blow” nearby electronics
  • Ganglion cysts, Baker’s cysts
  • Petechiae
  • Peizogenic papules
  • Lipomas and lipedema
  • Osgood-Schlatter’s disease (knobby knees from rapid growth in childhood)
  • Leaky gut syndrome, dysbiosis
  • Hypochlorhydria or low stomach acid (unsure fully why, but it’s common and lends to dysbiosis and SIBO) – possibly from high cortisol and/or thyroid imbalance
  • SIBO – Small Intestinal Bacterial Overgrowth (likely aggravated by weak ileo-cecal valves in us allowing more to “back up” than should)
  • Keratoconus (droopy or pointy thin corneas)
  • Sensitive eyes, trouble wearing contacts
  • Weakness, mitochondrial disorders
  • Seizures, hypnic jerks, myoclonus and actual epilepsy
  • PTSD, anxiety and panic disorders
  • Depression and mixed mood disorders of all kinds
  • Stretch marks or striae in either gender, not just after pregnancy in women
  • Pelvic floor dysfunction, prolapses (uterine or rectal, bladder, any)
  • Ptosis (drooping of anything, but most noticeably saggy breasts in women)
  • Drooping upper eyelid or eyebrow sometimes requiring an upper eye brow “tuck”
  • Spinal stenosis
  • Sciatica
  • Claw finger or hammer toe or claw toe
  • Early onset arthritis of any kind, as well as any other form of auto-immune disorders (very common in us, secondary)
  • Paradoxic reactions to medications, strong or strange reactions, need for increased novocaine or lidocaine

I’m stopping here for now, but will periodically add to this list. Some 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 patients. 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.

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