Battling to Sleep with Ehlers-Danlos Syndrome

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?

The Beauty of Sleep

The Beauty of Sleep

I would say sleep is pretty important to most people, but when it comes to chronically ill people – good sleep is like gold dust.  A rare and a magnificent thing (if gold dust is particularly magnificent?).  Sleep becomes difficult with a lot of conditions, whether they can’t sleep, don’t sleep well, find it difficult to sleep due to pain, or sleep way too long.

My sleep pattern is all over the place.  It’s often a few hours interrupted by pain, often not getting to sleep until 4:00-5:00am.  Then I’m falling asleep throughout the day as I didn’t get a good enough sleep.  Then every week or so I’ll sleep far too long – sometimes 16+ hours but still don’t reach that final deep stage of sleep – so I wake feeling unrefreshed.

I often have bouts of insomnia where I’m awake all night, and a mess during the day.  Insomnia is something I wouldn’t wish on my worst enemy.  Whether it’s one night of sleeplessness, or much longer, it’s just horrible and when it happens to me, the fine line between being a bit of a wreck, and being in the gutter shatters, and I’m a cranky, exhausted, mess.

This happened inconveniently for the days running up a wedding at the weekend, and I spent the whole of the ceremony – pretty sure captured on camera as well, desperately trying to keep my eyes open and mostly failing.

It usually causes splitting headaches, moodiness, and the inability to enjoy anything.  Your bed becomes all you can think about, and the further away that elusive ‘collapse into bed’ moment is, the worse you feel.

During my teenage years, and culminating in total insomnia during my first year of university, I’ve tried to practise better ‘sleep hygiene’.  I have rules, although I often break them!  I put these rules together myself from bitter experience, but the Pain Clinic also teaches them.

1)         First and most importantly, no sleeping during the day.  If you really, really have to sleep because oh no, your eyes are closing and can’t stay awake any more – make sure it stays under an hour.  Set an alarm.  I tend to find sleeping during the day equals hours awake at night, even if the nap was only brief.  This is an almost impossible one I break often, sadly.  If you really do have to sleep – don’t use your bedroom due to rule 2.

2)         Don’t relax in the bedroom or even read.  It should be for sleeping only (and you know, that one other thing!), so your brain connects your bedroom to sleep.  This does work; if I walk into my bedroom I usually feel a wave of tiredness.  I want to try and get the best sleep I can in that room, so if I have to nap during the day I pick another room.

3)         If you’re lying there wide awake – get up and do something.  Having said this, if I’m in the tired but can’t fall asleep stage I will often stay in bed anyway.  I use this time to drift off and daydream (or night dream?) as I feel this also benefits you.  But if I’m wide awake I’ll leave the room and read.  (Although I’ll often go on the computer which wakes me up more, so try not to do that!)

4)         Turn the clock away from you.  There is nothing worse than being unable to sleep, and watching the hours tick away.  If you don’t know what time it is, I feel you don’t get into that oh god I must sleep panic so easily.

5)         And final tip if you’re hardcore is to try and get a sleep routine.  This one I believe would work, but I find it too hard to stick to.  I find if I get up early when I don’t have something to do – I fall asleep against my will.

Credit to nioanto

Credit to nioanto

Further rules on sleep hygiene can be found in this article here by Amber Merton.