It’s looking more and more like EDS…

When one goes through med school, there’s a peculiar phenomenon that occurs when you reach the Pathology courses.  As one familiarizes themselves with the various diseases and their symptom lists, the tendency to freak out and become convinced that you have one condition or another, and become panicked and depressed about it is quite common.  I’ve always been conscious of this tendency, and I’ve actively taken mental steps to avoid falling into that trap.

So when I scan a list of symptoms of a particular disorder, I force myself to hold back a little.  Attempting to resist the Canyon of Devastation, I try to approach it like an outside observer, from the default position that I don’t have the disorder until proven otherwise, and there’s nothing to worry about until there’s something to worry about.

Today, that day came: there’s probably something to worry about.  Scanning the list of symptoms and co-morbidities for Ehlers-Danlos Syndrome (linked at the bottom of this post), (a condition that in med school we had merely hit the basics on and then quickly moved on (which is why I had never suspected it before)), my eyes grew increasingly wider.

All of these strange symptoms that I had experienced throughout my entire life were suddenly gathered in one single place, under one single label.

I had decided to look into this condition at the suggestion of a friend and fellow Asperger’s/autism spectrum-mate on Twitter, after I’d made a casual, off-handed comment about something I had considered benign, like a(nother) headache or (yet another) chiropractic treatment that I couldn’t hold.  My ears perked up because although our “study” of the condition in med school was brief and cursory, I had noticed a lot of Aspie/autistic people talking about it.

So, when that same friend offered me a good resource (an excellent blog; linked at the bottom of this post), I bookmarked it.  That was a couple weeks ago; I finally got around to sitting down and combing through it today.

The list of symptoms hit me like a pile of heavy, wet cement…

Subluxated joints?  Check (that’s why I could never “hold” a chiropractic treatment).

Loose joints?  Check that one, too (that’s why after sitting cross-legged for only a few minutes, the outside long bone of my bottom foot gets subluxated and every step hurts until I can get another adjustment).

Thyroid problems?  Yep, right there with you.  Probably due to the hyperadrenergia (excess adrenal activity – mentally checking off yet another symptom/co-morbidity!)

Unexplained weight gain?  Why yes!  How did you know?

Stretch marks on my hips, despite never having been pregnant?  Uh-huh (nodding vigorously now).

Tinnitus (ringing in my ears)?  Oh god yes.  Incessantly.

Heart-fluttering?  Yep.  It was worse when I had severe anemia, but it still happens occasionally today.

Injuries while sleeping?  Heh–that’s “only” how I herniated a freaking disc in my neck!  Oh, and it looks like I’m one of the mere 10% who don’t heal from it on my own; I may eventually be facing neck surgery. How did I do this to myself?  I merely had the audacity to sleep!

(Speaking of sleep…)

Insomnia?  Yep.

Ripping or tearing muscles/tendons when trying to stretch?  You got that right.  Had to have my chiropractic physician give me ultrasound treatments to heal it.  I was all of 17 years old.

Heavy monthly cycles?  Yep!  Until I had to have my hysterectomy, that is…for huge fibroids!  (Link to resource at the bottom of this post.)

Low blood pressure?  Yep, check.

Dizziness, nystagmus (previous), and headaches?  Yep, even as a kid.

Mast cell disorders?  Oh my, yes.  Histamine Attack are my two middle names.  For no apparent reason, either.

Dental maladies like cracked/fractured teeth, etc?  This is getting creepy.  (“Yes” to this bullet point, too.  I always tried to convince my mother that yes, I was practicing good dental hygiene and I had long ago chocked it up to “soft teeth”.)

The kicker: “club foot at birth”.  Oh my god, I didn’t even know that anyone else had been born with a club foot!  I thought it was just me.  I’d never heard of that happening to anyone else.  (It hadn’t been a huge deal; a chiropractic physician straightened it out so well that I didn’t know I’d even been born that way until my mother told me when I was older.)

That last one was too eerie.  I was sure someone had sneaked a peek at my health history.

The good news is, I don’t have the fibromyalgia-like pain or chronic fatigue–at least, not yet.  I learned a long time ago never to say never.

In fact, my recently-measured (multiple times) energy levels reveal the equivalent of two to two and a half people.  (What??)

Apparently, some of the genetic roots behind this are well-known gene mutations like MTHFR, COMT, and GSTM1-null.  I’m three for three on those.

Much like my discovery that I’m an Aspie, looking at the EDS list held up a self-reflecting mirror.  Except that this second mirror isn’t so relieving and liberating.  There are “a-ha!” moments, but nothing healing or freeing.  I can feel my already-burgeoning self-compassion mounting some more, but somehow, this isn’t so joyful.  If it is indeed EDS (which wouldn’t surprise me in the slightest), I’m not ashamed…but I’m not proud, either.

It’s been an interesting day, and a bit of a bummer, too.  Not that anything has changed; nothing has. But it tells me that my weight gain might be a little more complicated to deal with than I was hoping for.  And it does mean that the majority of my health issues will probably not be going away any time soon.

The OH Twist website does indeed recommend working with a Functional Medicine doctor (yay!!).  Well hell–I actually happen to BE one!  (Yay!!! again!)  So from here, I’ll untangle and work through my own root causes, just like I would do for any other patient who came to me for help with this symptom list.  Folate seems to be at issue, as do the other B-vitamins, Glutathione, Vitamin D, Vitamin C, potassium, probably Magnesium and Molybdenum (and probably Zinc), and many other nutrients.  I eat a pretty good, clean, gluten-free diet, of mostly fresh whole foods and home-cooked meals, but I haven’t been supplementing any nutrients (I know! Bad me!)

…Which brings me at least a little ray of sunshine poking through the dark clouds, a little tidbit of good news: there’s a lot of room for improvement.  From here, I have nowhere to go but up.  Now I just have to get my game on (three cheers for Executive Function!!)  Please send me your happy thoughts. 🙂 ❤


Additional Resources:

About EDS” from OH Twist!  (I recommend this entire blog!)

When To Suspect EDS” from OH Twist!

About EDS ~ Comorbidities” from OH Twist!

Ehlers-Danlos Syndrome, Hypermobility Type: A Much Neglected Multisystemic Disorder” – research review article dated 16 October 2016; free full text available.

Posts tagged “fibroids” on Mast Cell Blog, written by someone who also has EDS

Mast Cell-Related Conditions and Diseases” from MastCellAware.com

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8 Comments

  1. Hugs and prayers. All this is another area I know all too well. Mine remains in that fabled unofficial status due to the enormous cost of genetic testing, but, I have learned to deal much as I am learning to deal with my neurological issues. 🙂

    Liked by 1 person

    1. Thank you so kindly for your comment! 😊 That’s right about where I’m at, too ❤️ I’ll probably post updates as I find remedies (I think there are some! Might be able to at least put it in remission). Hugs and prayers for you, too!💐💐

      Liked by 1 person

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