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Chronic Physical Pain: Could it be Ehlers-Danlos Syndrome?

I was a little girl when I first showed my mom how my elbows move more than other people's. It was my party trick.

Bruises appeared without any painful incident. I admired my toughness.

Several rolls of skin stretched around certain corners of my body. I chuckled with amusement at the way my knuckles looked like an old woman's while my forearm was as soft as a baby's bottom.

A mug fell off the counter: my toe was so severely injured that the nail eventually fell off (after a traumatic visit to the doctor where they poked a large hole directly in the center of the nail through to the skin to drain it by squeezing extensively) & never properly healed after that.

During middle school & early high school, I was on crutches more than I wasn't. I kept spraining & twisting my ankle with the most minor of injuries: running around the lawn, a minor stumble meant I couldn't walk for awhile.

At age 15, I took a dare & completed a small bungee jump at the state fair. Ten years later, I discovered my hips fully twisted out of their sockets & had been trying to manage ever since. With every step I took from 2008 until 2018, my right hip would pop & grind---something I could feel internally, you could feel with your hand pressed against my hip, AND it created a popping sound audible to all.

During that beginning time of severe chronic ankle & hip pain, I began experiencing a sensation in my chest I can only describe as "ARE YOU SURE I'M NOT HAVING A HEART ATTACK?!?!"

By age 25, I was convinced I had fibromyalgia.

I am finally learning about Ehlers-Danlos syndrome & fighting to discover the truth about my health.

Individually identified symptoms thus far:

  • hypermobility

  • joint pain

  • fatigue

  • mitral valve prolapse (literally feels like a heart attack)

  • muscle hypotonia

  • repeated subluxations & even some dislocations

  • tissue fragility

  • chronic urinary retention (inability to empty the bladder, causing other problems including with the kidneys)

  • veins visible through thin skin

  • premature aging of skin on hands // skin hyperextensibility

((post: to be continued))

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