December 24, 2014

My Ehlers-Danlos Symptoms

I once had a friend ask if I had any negative aspects to deal with related to my contortionism.  At the time, I couldn't think of any.  "Wow," he said, "you're like a superhero! You just get to be super flexible with no negative consequences!"  I liked the sound of that....but it turns out I have a whole host of negative symptoms that are seemingly unrelated, but actually due to the same genetic connective tissue disorder that allows me to be so flexible.  I was diagnosed with Ehlers-Danlos Syndrome, or EDS, (type III AKA hypermobility type) this past spring by Dr. Levy, a geneticist, at Johns Hopkins.

EDS is a rare condition, said to afflict 1 in 2500 to 1 in 20000 people.  However, it's incredibly underdiagnosed due to its bizarre set of symptoms that don't seem cohesive if you don't know what you're looking for.  It is said that up to 30% of the population is hypermobile in some way, and while they probably don't have EDS, they might benefit from learning about how to take care of themselves from the EDS community.  In less than a year, I have learned that at least 3 of my friends also have EDS, have learned a ton from them about good resources, and I have helped other friends and acquaintances with hypermobility syndrome or potential EDS learn more about the diagnosis and how to take care of themselves.

For myself, and for those interested or dealing with EDS themselves, here is a list of my symptoms.
  • Hypermobility (9/9 beighton score), front-bending contortion
  • Velvety, soft, stretchy skin
  • Piezogenic papules
  • Subluxations (hips mostly, but sometimes shoulders, knees, etc)
  • Frequent hiccups (spasming phrenic nerve which innervates the diaphragm)
  • Hyperadrenergic
    • anxiety disorder, panic attacks
    • vivid dreams
    • difficulty sleeping long/deeply
    • easily startled
  • Endometriosis
    • surgically removed grapefruit-sized & eggplant-sized endometrial cysts Jan 2014
    • abnormally heavy periods, occasionally extremely painful
    • anemic (low iron)--possibly/probably related to heavy periods
  • Orthostatic hypotension (I black out when I sit up or stand up too fast because of low blood pressure)
    • up to 30x/day, sometimes not for months
    • I briefly lose vision, sometimes hearing, occasionally consciousness--once broke my nose falling on my face when I stood up too fast and lost consciousness.
  • Difficulty building muscle mass
    • back muscles randomly fail because holding my body in normal posture takes too much work
    • pinched nerves occur because muscles aren't strong enough to hold nerves in place.  Once lost feeling to my left arm for 6 months.
  • Sometimes non-responsive to lidocaine as a local anesthestic (THAT was an unwelcome surprise!)
  • Magnesium deficiency (muscle twitches)
  • Bursitis
  • Ankles easily turn/ ankle sprains get worse and worse
  • Knees can no longer comfortably support more than a few miles of bike-riding due to repetitive motion 
  • Kyphosis (or what I like to call duck-butt), (all dance teachers are like, "tuck your tail" and I'm like, "I AM")
  • Astigmatism, myopia (nearsightedness)
  • Dry eyes 
  • Crowded teeth (yeah I had a retainer)
  • Decreased proprioceptive accuracy AKA I am clumsy because I have a poor sense of where my body is in space.  Balance is very difficult for me.
  • Brain 'fog' (for me, this often manifests as not being able to remember simple words or phrases)
  • TMJ & bruxism (my jaw almost always hurts and clicks)
  • Night sweats
  • Occasionally tachycardic (heart racing)
  • Urticaria (AKA "hives". mast cells release histamine in response to irritation, or sometimes, nothing really)
  • Low testosterone
How I deal with these symptoms:
  • Prescribed anti anxiety medication, birth control pills (for endometriosis), and sleep aid (as necessary)
  • Supplement with chelated magnesium, ashwagandha and turmeric (to reduce inflammation), iron
  • Eat a lot of salt
  • Drink a lot of water (with electrolytes)
  • Take epsom salt baths as necessary
  • Limit caffeine intake
  • Regular low impact exercise (dance, yoga, pilates, swimming, walking, paddling, light biking)
  • Use athletic tape and braces for extra support
  • Wear daily contacts or glasses
  • Wear a mouth guard to sleep
  • Try to stay patient, relaxed and kind to myself;  Meditation and deep breathing really helps
  • Listen to my body and sleep or rest if I need to
  • Laugh about it all