Friday, 29 July 2016

Proprioception and Ehlers-Danlos Syndrome

When I was diagnosed with EDS type 3, (hypermobility, HEDS, whatever you want to call it) ten years ago I was naive enough to think that Ehlers-Danlos would be the strangest words I'd hear regarding my condition. Alas, my nineteen year old self soon learned a lot more; proprioception being one.

What is proprioception?

Basically, proprioception is all about knowing where your body parts are, it's about spatial awareness. Do you know how you just intrinsically know how to scratch your nose without looking in the mirror, or walk through a doorway without scanning the whole door frame? It's something most people aren't even aware of, and to those of you that don't suffer with EDS or a proprioceptive dysfunction, you'll probably have never heard of proprioception.

The proprioceptors in the skin, tendons, muscles, joints, are faulty and so the signals don't always make their way to the brain, and this can result in injury. I've always been called 'clumsy', I trip over my own feet, I walk into doors, I bang my head often. I know these seem like very 'normal' accidents but they happen a lot in a day. I just don't know where my limbs are in space.

Having disturbed sensory feedback and hypermobile joints is particularly problematic because most EDS sufferers find the most uncomfortable positions comfortable; and by sitting, standing, lying these ways, we're often overstretching, but the propriceptors aren't getting the signal to the brain that a trauma is occurring. Since dislocations and subluxations are common in EDS, an impaired proproception is an issue. EDSers also bruise really easily, and bumping into everything can sometimes look like we've been in a fight. If I had a pound for the amount of times someone has asked me, 'how did you get that bruise?' I'd be a millionaire. I never know how I get them because it happens so frequently. 

Since many of us have been living with dysfunctional propropception for years, it is very difficult to unlearn what we find 'normal.'

Proprioception and me

I find that I need to hold certain body parts before I can move them because they don't seem to work. One of my OT's noticed just how impaired my proprioception was and asked my physio to add some exercises into my regime. My OT found this when she was watching me write; I do so by just moving my wrist, hence causing a lot of wrist and hand pain - she asked me to write by moving my shoulder instead of my wrist, and I simply couldn't do it. I ended up holding my right shoulder with my left hand and willing my shoulder (a bigger, stronger joint that wouldn't be hindered as much as my wrist when I write) to move the pen across the page. I couldn't do it. I still have to consciously think about this every time I pick up a pen, and hold onto my shoulder.

I catch my thumbs. For as long as I can remember I've had problems with my thumbs, they're always sore, I'm always bashing them - I find that I need the sensory feedback by clenching my fists with my thumbs inside my palm or by making a fist and placing my thumb behind my index finger. This feedback is telling my brain that my thumbs are safe. I do this whenever I'm sat watching telly, when I'm driving, any time I'm not using my hands. I also loop my thumbs through buttonholes as this gives sensory and proprioceptive feedback. 

Similar to my thumbs, I also hold onto the bottom of my shirt. Again, this is giving feedback to my brain, 'I know where my hands are.'

One of my physio exercises is sitting on a gym ball with my eyes closed. Now, you'd think this was easy but as soon as I shut my eyes, I'm all over the place. I need to look or touch my body parts for feedback, but by closing my eyes I lose this. This exercise strengthens my core and helps retrain my proprioceptors. 

When sitting, I tend to sit cross-legged, thus putting my knees and hips into misalignment, but sending the signal to my brain that my legs are safe. You might not think sitting this way would be a problem but due to being hypermobile, I'm very bendy and it ends up painful and can cause dislocations, sprain and torn muscles. A non-EDSer may sit in this position and not overly stretch, but I don't have a limit, I am very flexible, therefore my hips and knees don't know when to stop. I can also readjust if uncomfortable but then will go straight back to sitting in the same position.

If my thumbs aren't tucked away or gripping onto my shirt, I often sit with my hands on their corresponding shoulders or holding (and stretching) the collar of my t-shirt.

If I sit with my legs up on the sofa or the bed, I turn my feet towards each other and grip my big toe on one foot with my big toe on the other. Once again, this is sending a sensory signal, but it is also putting a lot of pressure on my toes, ankles, knees and hips. Since the bigger joints are turned in, it causes a lot of pain.

I drop a lot of things, I can't put items on a table unless I'm paying close attention, I often miss the edge of my coffee table with my drink. I grip hold of things too loosely or too tightly, resulting in dropping or really hurting my hands. I bang into absolutely everything. I walk too close to walls and bounce off them. I drive my wheelchair too close to counters/tables/shelves - my spatial awareness is pretty much a load of shit. 

I find wearing gloves really beneficial as they're sending a constant signal to my brain about where exactly my hands are. 

I'm pretty sure I do so many other things to counteract this weird dysfunction but they're all I can think of at the moment. 

Proprioception is a bit of a strange one, and it's not something you think about if you don't have an impairment. But when you do, it's really noticeable. 

Have you ever heard of proprioception (if you're not an EDSer)?


  1. I was completely unaware that I had this privilege! Thankyou so much for educating me, your posts are always really informative while still being personal, and I always learn something new.

  2. Haha finding out about proprioception was so good when I got my diagnosis! I don't struggle with it quite as much as you do - but it's always great to have an excuse when I walk into a doorframe.

    1. Ahhh yeh, the walking into things never gets old lol x

  3. I had heard of it as we covered disorders such as this one when I was doing my degree in psychology. Really interesting to hear tour experience of it though. It's something that is definitely taken for granted.

    Amina xx |

  4. Thankyou so much for sharing about proprioception :) I have also always struggled with spatial awareness when it comes to my body and can relate to so much in your post, but I'd never heard of the name for it before. I'm pretty sure that I have dyspraxia as I've struggled with almost all of the symptoms throughout my childhood up to now, but I've never had it diagnosed. One of the symptoms that has mostly affected me is my spatial awareness, I walked into everything, I drop stuff all the time, I misjudge distances and end up putting something down and completely missing the surface, I'm surprised my phone is broken yet! x

    Sarah | Raiin Monkey

  5. Wow, this sounds a lot like me. I was only diagnosed with joint hypermobility syndrome last week, and I haven't seen a rheumie yet. I've always had joints like cooked spaghetti, but everything has got so much worse since I've had Fibromyalgia and ME. Because I have bladder and bowel issues as well as occasional fainting (possibly POTS) the bruising etc it's my belief I have EDS Type 3. I've always been clumsy, always been injured, always had no idea what my body parts are up to. When I'm at rest my hands are upside down in my lap as that's most comfortable for me. I always have one foot crossed over the other even if one foot goes dead after being like it so long. I often hold in my thumbs too! I've always joked that my bum has its own field of gravity as I CONSTANTLY knock things over with it. I feel like someone else is piloting my body. Reading your post has made further sense of what's been happening to me all my life, and I'm 42 now! xx

  6. People with CRPS also struggle with this due to the disconnect between the limb/area affected and the brain/nervous system. It is so crazy the things the body can do. I also have EDS type 3 so I guess I am just extra lucky and clumsy. Its especially frustrating because this means I am often hitting my CRPS limbs against things which means I go into a huge flareup. Stupid body!
    Great post!

  7. Omg, you just solved one of my mysteries! I knew I had bad proprioception, but hadn't linked that knowledge with the weird thing I do with my toes now. Makes perfect sense!

  8. Thank you for this, I just learned about proprioception in relation to my EDS, but you described it in a way that is SO relatable and useful. Resting my hands in my sleeves or pockets, and the toe thing! Omg...
    Very grateful for your eloquence!


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