Hi all , I have crps in all limbs sometimes called full body crps.
I'm thinking of writing a blog ,maybe book to follow to try and help others understand crps.
Starting at a strange place , the end of the day and bed time I feel is a good place to begin.
Like most of chronic pain sufferers I have tried everything to get a better sleep, I think the only bed I haven't had is a watered lol.
I now have a very firm bed foam topped which is king-size to allow extra space.
Going to bed is for me one of the worst things, there is not the normal pleasure of feeling tired and looking forward to snuggling down for a comfortable sleep. Instead there is the knowledge that just laying down is going to be a massive issue.
I have everything in place having studied sleep issues, no blue light the room at the correct temperature etc etc etc. So a lot of thought into getting at least some sleep. I also do all the other things suggested, no stimulants after 7pm , not I pad no caffeine etc.
The title I chose is because I found somewhere who sold 4 tog duvets . It's very thin and very light so as most with crps will confirm for me it's a must have.
This bit is more for other who doubt what crps and others with chronic pain go through.
I struggle to get up stairs for bed, lots of pain all over, eventually I reach my bed, sometimes hands and knees to scale the stairway.
On reaching my goal i sit on the bed usually needing to use some relaxation or diaphromatic breathing before its time to get my legs round. Once they are on the bed it's time to try and lay down, I usually use the pillows to slide gentle to a horizontal, the time is around 5 minutes to do this. As my crps is full body , my position is never straight with my head one way my spine zig zagged and my legs the other way, the strange thing is this feels normal to me, and to lie straight would be excruciating.
So I'm now horizontal, already feeling my bed on the parts of my body which are in contact with the mattress. Most normal people will describe that lovely sinking feeling as they lay down. In my experience I feel like someone is pushing from below and that my body is shaping into the bed rather than the bed shaping to my body, sound weird. Well it is, imagine if you will each part of your body adapting , changing ,moving to suit the mattress. I had to think long and hard how to describe this, here goes. Tonight instead of being on top of your bed, try to sleep with your mattress on top of you, that should give a good idea on this.
So now I'm laid down its time to introduce the 4 tog duvet, pulling up slowly I cover myself, and shift slowly to reach any level of comfort. To describe being covered with this sheet like duvet again is difficult to non sufferers. For those of sufferers who wish to have some idea on how this feels here is my suggestion, it may well help you to understand what a partner with crps is going through.
Place your duvet on the floor , lay down and have your mattress placed on top off you, now get a person either side to lift your duvet from the ground , sandwiching you between , this should give the feeling of crushing from the duvet and that you cannot move, ithe will also quickly become painful and you will feel that inability to move. You will want to move to a more comfortable position , but be unable to move.
So I'm covered in bed sore all over, I can't allow contact from my partner as even a simple arm over my chest quickly feels like a bus driving over me, I can't even take parts of my own body touching other parts, my legs on top of each other is a no no, it's just so painful. So as you may now all be able to imagine, sleeping is almost impossible, the rest I get is usually through exhauastion, where I pass out for a couple of hours.
I really do hope this helps with chronic pain sufferers, but more that it gives an insight to those who doubt, those who can't see so not thing wrong, those who choose to decide it's all in my head.
Sleep tonight as I suggested see how long you last, see how you feel tomorrow morning, then imagine doing it ever night in life.
Many thanks all so sorry for the massive post.
Take care everyone