What is Normal

Image of the head of a zebroid horse zebra cross animal with white body and black and brown striped head

Are we semi-common “zebroids” after all?

I know, “what is normal” is a really loaded question or statement, but I’m not intending it to be.

I’m just trying to help highlight how many ways we have “normalized” the milder manifestations of at least the most common and currently so-called Hypermobile form of Ehlers-Danlos Syndrome (hEDS) all these years as I write this in December 2016.

Update March 2017: I obviously now include all the newly recognized and described forms of the new diagnosis of Hypermobility Spectrum Disorders that were just “invented” by the International Working Group on Hypermobile Ehlers-Danlos Syndrome as announced by the Ehlers-Danlos Society on March 15, 2017 along with the new EDS nosology (first in 20 years.) This category is meant to catch all those not quite bendy/symptomatic enough to fit the newly tightened hEDS (hypermobile EDS) criteria now. <end update>

Other types may experience these things too, but are usually much more easily diagnosed due to grosser issues earlier on in life. I.e, what are things you experience with milder often undiagnosed hEDS or the new (as of March 2017) Hypermobility Spectrum Disorders besides the increasingly common fibromyalgia that the majority with “normal” or better aligned collagen do not?

The most obvious all these years is our gross flexibility, usually, lending to extreme bendiness and some contortionist talent. Yes, I highly suspect the lovely Sophie Dossi from the 2016 season of America’s Got Talent, among others. She is very hypermobile at a minimum, mistakenly taken by most doctors to mean just flexible, hopefully nothing more. (EDS = hypermobility plus medical issues. Some people are still believed to just be hypermobile by experts still.) Along with anyone else who is “double-jointed”, meaning you can sublux your joints at will, not that you have two joints.

NB Others can still have joint instability and other EDS signs despite not being flexible. That is, despite the majority with hEDS exhibiting great flexibility, not all will, but can still injure very easily and have soft inner tissues that rupture or tear still. Learn more here.

Popping your thumb or a hip out and back in easily is an example of a joint subluxation. It’s called a full dislocation when you can’t get it back in easily. Don’t play with your joints! One day it may not go back in, seriously! (Speaking from experience, ahem.)

Although this post will smack of my When Else to Suspect EDS list, it’s slightly altered with a mildly different focus on things we may not realize aren’t common to the majority of the world around us. This is likely because we are surrounded by like minded and bodied people in both our families, and among our friends – many of us find we are highly attracted to each other platonically and romantically. Whence our kids often get diagnosed first, they pull the “short straw” and get it from both sides, right?

But don’t stop mating, just be mindful as you do – we’re increasingly finding the gifts that come with it, and I believe with improved nutrition and medical support, we truly can have improved quality of life so that it’s not a burden for anyone. Just lower your inflammation, boost your nutrition and detox your lifestyle as much as possible pre-conception for the best outcome for all. We are an incredibly gifted bunch, some call “twice exceptional”.

But I digress…

Some other common “party tricks” we “zebroids” often enjoy:

  • reverse Namaskar sign ability (can put arms in “prayer post” behind your back)
  • Gorlin sign – can touch your tongue to tip of your nose
  • ability to flip your eyelids inside out easily
  • very flexible ears
  • great gymnastic or contortionist ability (can do the splits easily)
  • stand on the sides of your feet
  • W-sitting” (don’t do it!)

Other things that are common for us, but not “normal” for the majority of the human population include:

  • Weakness or being prone to more injury on one side of the body especially, not necessarily your dominant side either
  • Piezogenic papules (isn’t that a great word?) or “fat papules” on your heels
  • Running much hotter or colder than others on average (usually colder)
  • Trouble falling and staying asleep
  • No filter – trouble with interrupting others a lot (look into ADD/ADHD)
  • Sensitivity to vibration, sunlight, temperatures (hot or cold), stress (see MCAD)
  • Highly sensitive INFJ personality and senses, score high on HSP scale
  • Lots of esoteric, “out of the ordinary” experiences, ESP, telepathy, psychic ability, or may identify as Indigo Children
  • Tendency to carry an electric charge and “blow” surrounding electronics and light bulbs. Also experience static shocks easily in winter, or almost any time. (Use vacuums carefully, they tend to build up static in us. Try to grab a desk, chair or other piece of metal before grabbing your phone or laptop to “discharge” this first and save your gadgets. Also try to eat lots of veggies or drink alkaline water to balance your acidity which lends to this.)

There are more, but I’m just throwing these out off of the top of my head this afternoon. I’ll try to add to and flesh out this post a bit later in time as things bubble up. I was just inspired to share this after a great conversation about one side of our bodies often being weaker for some of my Twitter followers today.  (This was a revelation for some.) It prompted me to think “what else don’t people realize is attributable to hEDS?” And voila, this post. (Welcome new followers here and there!)

No, not everyone will experience all of the above. That is never the case. (Boy are we a highly black and white thinking bunch!) Just as no solution will work for everyone either, it’s as individual as fingerprints. These are just some common themes I see crop up in the very large online support groups (over 20,000 on Inspire now) periodically.

Finally, I complete a post before midnight! Mark it on the calendar.




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2 Responses to What is Normal

  1. Jeanne says:

    I really like the new catch-all phrase: Hypermobility Spectrum. It’s true, no two cases of EDS or HEDS are exactly alike. I am not as bendy as the classic type 3 EDS, and I have some type 1 symptoms ( fragile skin in my mouth that tears and bleeds easily). I am an HSP/ INFP ; and who has injured both knees with permanent damage; also both shoulders (I could disjoint them, as a kid); my feet and ankles are such a loose, weak nightmare that my orthopedic therapist called his colleague over to see what a wonder it was that I could even walk. This runs in my family along with what I believe is comorbid von Willebrands Disease ( we are bruisers and bleeders ).
    Fortunately, I don’t have POTS….but have had chronic poor stamina and have been prone to adrenal fatigue my entire life. And yes, I flush red at the drop of a hat. People, strangers in public come up and ask me if I’m okay….I am beet red from stress or exertion but otherwise, okay. Oh, and restless legs in bed at night….and arms that flail as I drift off to sleep.
    I could go on ( mild Asperger’s syndrome, ADD, etc). I guess we EDSers are like an alphabet soup of funky genes. Maybe I should start a blog about the lighter side of of being a genetic mutant and call it: “Do These Genes Make My Aspergers Look Big?”

    • Jandroid says:

      LOL – love it! “Do These Genes Make My Aspergers Look Big?” – that’s brilliant – go for it! I’m glad you are also able to find some humor in this lousy constellation of issues we “enjoy” – like, some mad doctor threw a bunch of diagnostic spaghetti against the wall and waited to see what stuck. (Apparently it was well cooked, cuz a lot is sticking for our lose.)

      Thanks for sharing your “normal”. And oh yeah, that darn flushing red gets me every time… sigh. Cheers, Jandroid

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