Ehlers-Danlos Syndrome: the beginning.

This is the other ED(S) that has affected me far before I ever had eating disorder thoughts or behaviors. No two people with EDS are the same. I am telling my story.

“Ehlers-Danlos syndrome is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.” – Genetics Home Reference

Growing up, there were many peculiarities that never quite added up. From birth I had pectus excavatum (learn more about that here). We never found any answers as to what could cause or be related to it. My parents always considered me the clumsy, accident-prone child. I can’t put a number to the x-rays I’ve had because we were so certain I had broken my arm, wrist, foot, etc. I was constantly injuring myself. I would trip over things, fall, and run into just about everything. There was always pain, from minor tweaks to barely being able to move the affected joint/limb.

By the time I’d had a few negative x-rays within a year, my parents and doctor both became skeptical. They thought I was a hypochondriac or exaggerating for attention. I felt extreme guilt and started believing that maybe it was all in my head.

Soccer was my love for 10 years. Playing such a highly physical contact sport beat up my body. I never had less than 5 large bruises (and numerous smaller ones) at once in various parts of my body. At the time, I attributed it to soccer even though my teammates didn’t have near as many. Along with bruising came sprains and general joint pain, ranging from mild to causing me to limp or miss games. A new symptom and diagnosis came to light as I entered late elementary school: snapping hip syndrome. Being a kid I thought is was so cool to show/freak out people with how my hip did weird things. This made soccer and other activities painful. I had to take special care not to favor my right leg at all.

My most telltale symptom of EDS that everyone excused was my “double-jointedness.”(not actually a thing if anyone was wondering) My ankles, elbows, wrists, hip, fingers, shoulders, and knees all were affected in some way. Most were just hyperextensive, but for the rest it led to instability in the joint. I felt awesome to have these different party tricks to show others. It was this quirk I had that was special. I didn’t realize what would come from my stretchy joints.

Early middle school began with neuropathy that has never ended. The details are a bit fuzzy, but one day I hit my outstretched forearm while walking off the bus. There was a pop, then pain. Fast forward a few days and I’m dealing with sharp, burning, radiating pain all along my right forearm. Numbness and weakness followed as well. You could cut a line to exactly where it ended, all along the pinky side to ring finger, which should have been a clue as to its origin. Naturally we go to the doctor, he does an x-ray, finds nothing, and then sends me to an orthopedist. Long story short, I finally get diagnosed with cubital tunnel/ulnar nerve entrapment/ulnar neuropathy. This doctor really had no clue about EDS or anything but did discover my nerve problem was secondary to the elbow hyperextension. My nerve is entrapped which then leads to all of the nasty symptoms I have. Looking back, that “pop” I originally felt was most likely a subluxation which happened to disrupt my nerve.

knew there was something wrong with me. Everyone else saw the girl who was accident-prone, extra flexible in weird ways, had those random chronic joint issues. What I felt was much different. I’d gotten past the stage of thinking this was all fun and games. I was in pain every day, although mostly minor. My issues didn’t make sense given family history or in comparison to friends my age. I was injured more often, from seemingly small instances, and often had residual pain far after. The bruising was pretty extreme as well.

I stumbled upon Ehlers-Danlos Syndrome one day as I was searching for someone else like me. I felt there was a reason for what I was going trough and that it didn’t all happen to be occurring together. I actually was just looking for a link between my PE and anything else because it’s relatively rare for women. EDS-HT came up and suddenly I could give this a name.

The more I read (research, not Dr. Google), I could see how the symptoms I’d set out to name and then some fit into the EDS – Hypermobility Type diagnosis.

  • hyperextensive joints
  • instability in the elbows, wrists, ankles, hip, shoulders
  • ribs that move, sublux, and dislocate with pain
  • snapping hip syndrome
  • pectus excavatum
  • IBS- irritable bowel syndrome
  • chronic migraines
  • proprioreceptor issues – hence the falling, running into things, etc
  • easy bruising
  • injuries, slow healing, pain
  • questionable POTS

I still have never been to an EDS specialist or even a doctor who knows much of anything other than symptoms and basic diagnostics, but either way I live with this. The name means knowing the reason behind my struggle. I’m not making this up or crazy, it’s just my faulty collagen.

It has only gotten worse over time, but even now EDS is not gravely impacting my life. I am mobile, independent, and my pain is manageable. I sometimes find it hard to even say I have Ehlers-Danlos simply because I don’t have a severe case. I am writing here because despite that, I do struggle. I know there are others like me as well. I want to share where I am now and what my future will look like. This is a part of me and my story, however small it may be.

6 thoughts on “Ehlers-Danlos Syndrome: the beginning.

  1. Wow, that’s really interesting! I mean, yeah it sucks but still, what a fascinating read. I’m hyper flexible which caused me problems later in life when back pain arrived. I was told I needed to build my core, that it was sloppy. “Really, but I’m (was) an athlete!” The PA told me that because I’m so flexible I never needed to develop what other people do but in the end it hurt me. I recommend finding a specialist if , for no other reason, just to find out ways to prevent possible damage as you age.

    I now have multiple pain issues but recently discovered I have something not associated with anything. I thought it was a part of fibro but it isn’t. Basically if I’m pressed anywhere on my body it hurts. I think it’s a part of the myofascial pain syndrome but it’s unconfirmed mainly because I haven’t bothered pursuing it.

    I wish you well.

    Liked by 1 person

  2. I really loved your post. My 2017 goal is to improve my writing and share my story with Ehlers-Danlos Syndrome as well. Your pain is definitely valid. I often hesitate telling others I have EDS as well, but I’m learning to share my story and promote all the things you can still accomplish with a chronic illness. Glad to hear you are spreading awareness as well!

    Liked by 1 person

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