I am a walking disaster zone.  The theme tune to my life goes something like this:

“Ouch!” – me walking into the door frame on my way to the loo after I’ve woken up.

“Owww-a!” me jabbing the door latch into my arm on my way back to the bedroom.

“Umpf!” – me missing a step on my way downstairs and only avoiding a fall by grabbing the banister, which then pulls the ligaments in my shoulder half off.

“Bugger it!” – me catching the edge of the table with my cup and sloshing tea everywhere.

“Ow, shit, ow, shit, owww!” – me stubbing my toe.

*Sigh* – me dropping the car keys.

“Ouch-a!” me banging my head on the door getting out of the car.

“For fucks sake!” – me slicing my finger open cutting an onion.

“Ow, ow, ow, ow, ow!” – me burning my arm taking something out of the oven.

“Bollocks!” – me missing my mouth and spilling POM juice all down my jumper.

“Umpf!” – me missing a step and falling back up the stairs.

“Ouch-a!” – me ricocheting off the door frame on my way back to bed.

“Hmmmm…..” – me lying in bed realizing half the skin is missing from my elbow and I’ve no idea how it happened.

As a kid, my Mum used to tell me “well slow down and stop doing everything at a hundred miles an hour!”.  It turns out that wasn’t the cause of my “clumsiness”, it was poor proprioception which is common in people with Ehlers-Danlos.

Proprioception is one of our senses and is the ability to know where our limbs are in space so that we can judge distance and movement.   It is based on receptors densely packed in the muscles and tendons.   Proprioceptors measure physical proprieties such as muscle length, tendon tension, joint angle and deep pressure. Signals from this sensory orchestra are then sent by nerves through the spinal cord to the brain, which continuously feeds and updates the sensory-motor maps of the body.  However, in EDS this feedback loop appears to be faulty.

It isn’t yet known why some people with EDS have poor proprioception but it may be that, due to tissue laxity, proprioceptors are unable to give the right feedback and the body is continuously receiving the “wrong” motor information about where it should be.  Certain exercises are designed to re-train the brain and improve proprioception and a good Physiotherapist should be able to offer guidance on this  – sadly they didn’t work for me but are still worth a go.

When you have EDS you just  learn to accept that not a day will go by when you don’t have a cut, graze or bruise.  It’s not very ladylike to put on a dress with legs that look like they’ve been trampled by a herd of wild elephants, but on the up-side I’m considering taking out shares in Germolene and Elastoplast – I’d make a killing 😉 .



4 thoughts on “Proprioception

  1. kneillbc

    Jak- I would bet that if you recorded yourself for a day, edited out all the silent bits, you would have a viral audio lip. It’d be hysterical!!! My Doctor gave me a very funny gaze when I mentioned ED, and asked if it might be possible that I have it. Every time you mention something about it, I think “Whaaaaa? She is describing me!” As an adult, my proprioception has improved, some, but I was a walking disaster as a child, and well into my 20’s- long after most people outgrow any clumsiness. Interestingly, my son (10), who is also very, very flexible, used to have awful proprioception, and recently it has improved. He has been working with my husband’s personal trainer, who was trained as a physio in Ireland. She has done a bunch of things with him (such as a certain type of crawling, other cross-body tasks, etc.), and he is so much better. Ahh, to know the things I know now, when I was a child. It’s so easy to change things when you’re young, and it gets so much harder with each decade.



    1. bertieandme Post author

      LOL! I could be a YouTube phenomenon 😉

      Only 5% of people with EDS are actually diagnosed. 5%!! Crazy. Doctors have never heard of it. I was told my whole life I was “double jointed” by every physician I ever met, but EDS was never mentioned.

      I was the other way round with my clumsiness. Never had any as a kid, and was on all the sports teams in school. I started realizing I could no longer judge distances to catch a ball when I was about 18. The banging into things only really started when I was in my thirties and now it’s a daily occurence – door openings and I are not friends 😉

      Jak x


  2. Joan

    Hi just found your blog. It’s like reading my own life story apart from the back surgery. I was diagnosed with heds some years ago but the tempo has gone up and up in the last two years. I’m convinced it has something to do with the menopause. I’m 52. My symptoms are multiplying by the day. Can’t really find any connections on the internet though. Have you come across anything? 🙂


    1. Jak Post author

      Hi Joan

      Hormones haven’t really been studied well yet, but there is some info here:

      It’s clear from reading the EDS message boards, however, that hormones at puberty, menstruation and menopause are significant triggers for EDS becoming worse.

      You might like to do a search of the Inspire forum re menopause




Leave a Comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.