Battling to Sleep with Ehlers-Danlos Syndrome

In my next life I shall be a cat who sleeps anywhere.

In my next life I shall be a cat who sleeps anywhere.

I was settling down to go to sleep the other night, and putting my joints in the right positions – and it made me think about how much effort I have to go to at night to get it right.  Most people jump into bed, lay in whatever their favourite comfortable position is and go to sleep.  But for me, a lot of thought has to go into it, and it still often goes horribly wrong!

First of all it’s all about placement.  I have to make sure no joints have too much pressure on them – particularly my hips, knees and shoulders.   Sometimes it’s a no-win situation, for example I have to sleep on my side, and if I lay with my shoulder underneath me then the pain builds.  However, if I pull my shoulder forward to take the pressure off – it’s likely to subluxate or go into spasm.

Many of my joints have to be bent – particularly my elbows and knees, otherwise they will lock in hyperextension (this is when the joint goes past its normal range of movement) and ‘freezes’ in place.  When this happens I have to warm the joint up, and then slowly, and very painfully force it out of hyperextension and fold it back into position.  It will usually throb with pain sometime after this.

However, other joints must not be bent, including wrists, and fingers, otherwise oddly they too will freeze in this position.  Last night I ended up in a lot of pain because in my sleep the top joint of one of my fingers had bent.  The pain in just that one tiny joint woke me up and kept me awake for some time!

Most importantly – with any joint, they cannot get left in the same position for too long, or I’ll be in for a world of pain in the morning.  So I have to wake up regularly to turn over, and move each joint in turn.  Often a joint gets locked up – usually one of my hips – and I have to turn over and try and drag it over with me which is more difficult than it sounds.

In addition, as anyone that knows me will have seen and heard – I’m always having to crack my neck.  This continues throughout the night – with the pressure in the joint building up until it wakes me, and I have to crack it all out which you can’t do very well lying down.

Sometimes trying to solve one issue causes another.  For example putting a cushion between my knees help eases my lower back pain slightly.  However, on day three of using this cushion I get absolutely horrendous hip pain that leaves me unable to walk.

No matter how carefully I try and keep in the right positions, my fidgeting continues into my sleep and that causes a lot of problems.  I cannot sleep on my back, at all – but sometimes this happens, and in return I wake up screaming with burning nerve pain shooting down my leg.  I also frequently get cramps, or muscle spasms that make me jump awake.

This is just a normal night – often I have an injury, or a flare up in a specific joint that throws everything out.

So you wonder why I’m tired?  People with Ehlers-Danlos Syndrome struggle to get into the final REM restorative stages of sleep.  We also tend to wake up naturally hundreds of times a night.  On top of that, I suffer from insomnia – and often don’t get to sleep at all until 6:00am – 7:00am.

So no, I don’t do mornings.

Fellow EDSers – do you relate?

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6 Comments

  1. Omg! YES!!! I totally “get” where you are coming from with *all* of this. I have often (half) joked with hubby that we should just clear out all other furniture from the bedroom and just have a double bed each, so that we might each stand some slim chance of sleeping.

    Reply
    • I’m so sorry I missed the comments to this post, I don’t know why it didn’t alert me.

      Yes, I honestly think two double beds – or a larger bed is the way to go. It’s so important to be comfortable, but also remain close to your partner if you wish to.

      Reply
  2. yeah get that! im constantly moving and can only sleep in one awkward position definatly not on my back or my side! so only option is on my belly

    Reply
    • I’m sorry I missed these comments.

      See, we are all very different – because I did that my neck would be sending me actual complaint letters. ;) Sometimes we don’t realise how difficult one task is until we think it through though.

      Reply
  3. It helps to put a pillow or two under your knees if your lying on your back I know this helps my back and hip for the morning and if I can fall asleep they I wake up in much less pain. I tend to cross my legs which is bad though too. I suffer com constant hip subluxation and am freaking doing the drag your talking about. I just order a feather topper for my bed hopefully this will help support my spine and the cushioning keep me from turning over. Same problems with the shoulder as well and neck! I’m sorry your suffering so, I gotta go hip is pulling!

    Reply
    • I’m sorry, for some reason I didn’t get notified of replies to this post.

      I know a pillow helps a lot of people, but for my it throws my hips out badly. I’m a leg crosser too! I think a lot of us EDSers are.

      I love the topper I have in bed, it did make things much more comfortable. How have you got on with yours?

      Reply

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