Crps the 4 tog sleep nightmare

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

Dave

9 Replies

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  • Ok that is very smart of you to think about writing a book about this!! I really suggest you do that! We need suggestions and feedback and insight from someone that actually has this and knows how it feels and have suggestions of what to do! Your very smart! Please do this!! And it will keep you busy as well and I can tell by reading what you wrote that you will do great!! Don't give up and just go for it!!!

  • Ya I just read what you said again! Wow do I know how you feel! Honestly I can barely stand the pain I go into the bathroom and cry! I could listen to what you have to say over and over just because it makes me feel better to know I'm not alone! Your a survivor like me stubborn and strong!!

  • Hi there cheers for the response, glad you enjoyed the read. I have lots going on .I just got datest for training to become a tutor for chronic pain so happy, 4 days next month.

    As the book it's something I've been working on in my head for a year or so, I am trying to find someone to help with the writing grammar etc .but I don't want it written for me if that makes sense, I have all the ideas

    Just maybe things could be worded more efficiently. Don't want it to boring lol.

    Thanks again

    Dave here to help with anything crps lol

    All the best

  • Where have you gotten the unique opportunity Davek723 to tutor about Intractable Pain? It should be mandatory learning for all Medical Professionals and if lucky enough to have someone homehelp with cleaning and Groceries etc., wipe the looks off cause it is not enjoyable to "stare" at a television when the pain does not allow for one to know what it is they are even watching, retaining zero. A little coloring can distract if you can get into any comprehensive position to do so. Do we have limbs that don't agonize at everything we would like to try to do. How long do we have to keep trying as we are in shear hell as our conditions are progressive in nature? It's bloody near insanity.

  • Hi there, we have a group run by the nhs called epp.

    Expert pain programe .

    To gain access to training i attended a few groups this then gave me access to training for them.

    I didnt really think i would get alot from the groups but i have met alot of lovely people made some understanding friends etc.

    The courses are all run by volunteers who have chronic pain so not being preached at by people who have no idea.

    I have completed all my interviews etc so just the training to go. Then i will do some shadow work with view to delivering the courses. I have also entered for mentor training which is one to one basically for those who cant yet face a group situation .

    My goal is to run my own private pain management consultancy. Passing on my ideas techniques .

    I really enjoy the courses but have always felt they are very scripted , as they are a licenced product.

    They do cover everything but i feel they are a bit compact. Plus i have my own ideas to use.

    I will volunteer as well as this gives me all sorts of training opportunities in the future.

    Many thanks for your reply.

    Wish you all the very best

    Dave

  • How much we all take for granted until it's gone. As I watch and listen to many who hold no gratitude for much it leaves me completely perplexed as knowlege about Chronic Intractable Pain is at most peoples fingertips but the desire or even curiosity to learn does not fizz many, even Doctors. Giving insufficient pain relief I believe being at the height of ignorance and we call ourselves humankind?

    Here's to everyone that understands Davek723, I do.

    I won't say sleep well but pray that by exhaustJon only, your wiery body and mind will rest.

    If we could only remember what a solid 4-5 hours would be like or 2 × 3 solid hours or just one two or three hour sleep and to know when that wiil be.

    Sleep well everyone x

  • Hi Dave I have had crps for 7 years now and because it was so bad that I could not sleep in a bed I was lucky if I got 1 or 2 hours of sleep a night in the end that I had my left arm amputated above the elbow that was in 2011 and then my feet above the ankle that's because my crps was really bad my pain specialist told me that it was the worsted crps he has ever seen, I think it's a great idea if u wrote a book about it because there's a lot of people and doctors that have never heard about crps, I wish u good luck and hope to read u book when u have wrote it.

    Best wishes.

  • Hi there thank you so much for your reply. I was unsure wether a book would work but the 2 replies i have had may have changed my mind. Im just scared i waste what would be a year of my life for it not to be published.

    I did think of having someone help me write it , but its been in my head all night. Lol i am now thinking i should just write it as my ramblings, with only a spell check. I was concerned someone helping would make it to well

    Written . I would prefer it to be exactly as i write it. It may have mistakes the grammar punctuation etc might not be perfect but i think this is how it should be written. Hope that makes sense.

    I will begin writing in may i will contact a few publishers with my idea .fingers crosed .

    Keep well thank you for taking the time to respond.

    Dave

  • Davek723

    Even if you don't write a book, please don't stop writing about your pain. I also have an intractable pain condition and find that writing it all down really helps me to 'unload' all the anger, stress and heartbreak without unloading it all onto my family. I write a regular blog called "TopladyTalks" @topladytalks.com. I really find it helpful so don't stop, just keep going. Being in constant pain is a very lonely place to be and I find it very therapeutic to get my stresses down on 'paper'

    Keep going

    Xx

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