lack of sleep

why does fibro. effect our sleep patterns so much, I used to be able to sleep anytime, anywhere, now I seem to have lost the ability to sleep, it seems to be around 5/6.00am before i manage to actually sleep, I feel tired but the minute I lie down, start to drift, my legs start to spasm and 'bang' Im awake. once I would have been able to make it up a bit by napping in the afternoons, now that seems to have gone as well, I just want the pleasure of sleeping!!! I enjoy sleeping!!! it a fibromyalgia thing? or just coincidence?Ive had 4 hours sleep in the last 24, Im tired, but I know theres no point in getting wound up about it, but why does it happen? I thought fibro was supposed to be like a chronic fatigue thing? well someone needs to have a word with those experts! biggest problem when I cant sleep, I head for the icecream!! Lyzzie Yawn.

27 Replies

  • Hi lyzzie lol oh yes it is deffo a Fibro thing, the fatigue is always tired, even if you have sleep, its never enough & your always tired,

    I love my sleep like you & it's so annoying when your tired but toss & turn & twitch & jump, its like a flippin game lol drives me to distrAction 😪😪😪

    Luv Jan x

  • Sorry you have this problem Janet, but Im glad Im not the only one!. Twice tonight Ive tried to sleep because Im so tired, but only lasted about twenty minutes on each side! , that sounds odd, but I usually sleep better on the left hand side, but that didnt work. The twitching & jumping is me as well, sometimes its just the muscle tightening, then relaxing but that annoys the arthritis in my hip!, it so frustrating !!!! at least my friends understand and try to avoid times they think Im asleep, but as thats so varied they often wake me anyway, but its not their fault. Thanks for letting me know Im not on my own!, before I go, I find I cant concentrate enough to read when Im this tired, so I cant distract myself, do you find that too? thanks for listening. Lyzzie x

  • Hi lyzzie sorry I missed your reply ☺ Well last night it was 5 am before I eventually nodded off only then to be woken up by neighbours playing loud pop music (not amused lol).

    Funny as I have arthritis in my hip too, suffer with it bad in my feet & back & hands, so painful & as you say, 'makes the Fibro worse'.

    No definitely can't read, I'm tired & want to sleep, I know they say, 'get up & do something' but it impossible to do that when your so tired & end i up laying there, thrashing about, pillows under leg, out the bed, cover on, cover off haha, wouldn't mind but I'm on my own lolll...

    Luv Jan x

  • you mean it wouldnt be the as painful if say...Russell Crowe was there with a nice cup of Tea? I like the bit about the covers, thats me all over, or uncovered, the dog gets cross with me, I usually end up going back in the living room to try and write for a bit, or find a film to watch, there are some odd programmes on late are night!

    Was just talking to Peck, the Olympics begin soon, so being awake in the middle of the night will be a little more interesting, love the diving, swimming and Gymnastics, still doesnt make up for living your life upside down does it?

    With me its the Ulcer that keeps waking me up, it has a vicious right hook! I tired now, But I wont let myself got to bed early, it seems to make things worse. If I dont lie down enough my right leg balloons up with fluid, you cant win can you! Best of everything. Lyzzie x

  • Oh the pain would be gone like a shot hahaha..I have an agreement with my dog, he doesn't growl at imaginary dogs all night & i don't keep getting out of bed lol..

    Ah yes forgot about Olympics, yes me too, swimming & diving my faves and gymnastics too, not to interested in rest of it but I love to see the opening ceremony, its fantastic show isn't it ?.

    Aww ulcer, very painful, poor you. I do get indigestion & heart burn if I eat wrong foods & my stomache blows up like a balloon lol.. I've seen people in tears & rolling around in pain with stomache ulcers, so wouldnt wish that on anyone.

    I get swelling in my ankle quite bad too & have to put them up, its a vicious cycle my friend.

    Well i hope you sleep well tonight

    Luv Jan x

  • With buggles its his legs, the paddle like mad and hes fast asleep, if you hold them for moment they stop, then off he goes again, wonder what hes doing? If not that then hes sucking away making slurpy noises, I always think hes being a puppy again. He get visibly annoyed if I disturb him too much, narrows his eyes at you, you know the drill!! Love him really. Sleep well Jan. Lyzzie x

  • Hahaha yeah Harry's same, I think he's trying to get down the rabbit holes lol..there used to be a Sat.morn kids program where they would have to do an impression of a Dying Fly & i a ways say that's what he's doing haha xx

  • wouldnt be without them, would we. He's my rock. Lyzzie x

  • I feel your pain it's so bloody annoying.

    Elf x

  • Hi Lyzzie, I'm not sleeping either so annoying 😱

  • Any suggestions? One of the things that really gets to me is the way that my legs keep going into a spasm, or keep moving about, the muscle literally tightens then relaxed, sometimes it jerks my whole body, whats that about? is it to do with circulation or the Fibro itself? my doctor did give me quinine for a couple of months but said you cant have it regularly as it isnt good for the body, but did suggest drinking Indian Tonic water as that does contain Quinine at a much lower dosage, I must get some again. By the way, someone on the site mentioned Cherry juice as being good, I cant find pure juice, I order some from T but it turned out to be a type of Squash, which I dont like. Do I need to find a health food shop for it or was I looking in the wrong department? Hope you rest soon Robbie, Id say we should start an insomniacs club, but we already have it dont we!!! Lyzzie :)

  • I'm the same I'm lucky if I manage 5 hours a night. I'm thinking it's a fibro thing as it was in the information I was given and everyone I seem to speak to has this problem. They really do it seems to just be creating insomnia and i am the same ice cream, chocolate biscuits, crisps anything munchy I grab which isn't great ether hope you manage to get some sleep tonight. Georgia x

  • hate to admit it, Ive just scarfed two little custard cream slices, no wonder my blood sugar goes haywire!! Again, Im sorry you guys have these problems too, but its good to know your all out their and were all in the same boat, Even if it does feel like the TITANIC at times!!. Thanks all of you. Lyzzie. x

  • lyzzie, Sorry YOUR NOT sleeping.If you slept who would I chat with when it 8 00pm at my home, when would you do your grocery shopping, I do hope you get some sleep as we have to sleep or our minds and bodies will suffer.Talk with your gp hopefully he/she can help.Good luck. uour friend, Peck.🐤

  • Hi lyzzie

    I am so gneuinely sorry to read that you are experiencing this issue, and as a life long insomniac I can truly relate to this problem. I think it is more than likely connected to the Fibro but if it persists or gets any worse it may be best to discuss it with your doctor just to have other medical conditions ruled out of the equation.

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • I try not to let it bother me ken, but the aspect that does worry me is that as I have sleep apnoea I used a machine to force the air into me and keep the oxygen levels up, (Im sure you know the machine I mean but as usual I forgotten what its called) but because Im not sleeping Im not getting the hours with it that I need, and that is what is affecting my concentration, I've also noticed that Im getting a lot of tachycardia because Im too tired, a little bit of angina, so I will talk to him, hes back off of holiday this week and Im due to see him anyway with the results of the blood test etc., Lyzzie ;)

  • PS, just a quick follow up to your corn, I liked it so much Im going to try and get my farmer friend some seeds to try, she likes stuff like that and her garden has lots of odd plants, (And a Grape Vine!!) its a better idea than perfume or some such isnt it, more suited to her so thanks for the idea! Lyzzie

  • That sounds like a great idea! I think I would appreciate a gift of that nature rather than the usual after shave and stuff people buy for me x :)

  • That's not good my friend. I know the machine it is a C-PAP. I have one my self because of sleep apnoea, so I can relate to everything that you are saying. Please take care of yourself x :)

  • My granda would say we all need putting in a bag and shaking up!!. I had no trouble getting used to my mask, but while I was in the ward one man brought his back and said he couldnt put up with that, me, I prefer to breath at night!! You know where it blows air out of the top? I use that to chase the dog around the bed!!, he gets quite cross, hey you have to get your giggles where you can!! I dont know if Im allowed to say but I attend that heart hospital near camdbridge? they are so laid back and treat you really well. Keep well. Lyzzie x

  • I still struggle with mine and pull it off in my sleep every so often! You can say loads of good things about hospitals and doctors etc but my instructions from FMA UK & HU are not to allow bad things to be said, that is a real balance on reflection? x :)

  • Dont envy you that one, most people have had good and bad experiences but in general I have been very lucky, my Surgery is superb, I stick with my GP but would go to any of the other partners, [that okay?] are wonderful, Id never dealt with a hospital that stuck to the time they gave you for an appointment!!. There was another lady there whos husband didnt want her to have the mask because it leaves marks on the face and people might think he'd hit her hhmmm strange. I wouldnt be without mine, its not so much fun in the summer heat though is it? and it plays havoc with my hair which is long and rather curly, all in all an excellent invention!! most of the time I get on fine with my local hospital too, I think they do what they can with the money and staff they have. Regards Lyzzie

  • :)

  • I only manage 4 - 5 hours sleep a night. Spoke to my gp recently and he said its fine, we don't need as much as we get older 😡

  • Suggest he tries 4-5 hours a night, night after night for a few months and see if he doesnt need as much sleep. What a load of rubbish!. Lyzzie x

  • hi same as me its always around 5 to 6 am l fall asleep as soon i do the muscle spasms start down the right side of my head face and neck plus the paralysis dreaming starts more like nightmares so i have fight to sit up so i stay awake i manage to get a couple of hours in the afternoon but wake up around 3 times during that. i just feel shattered all day. the brain fog has started already this morning i burnt myself trying to put the milk cartoon lid on top of the kettle as i am trying fit the kettle into the fridge. well good luck in trying to get some sleep. maco100

  • sounds very familiar, what I find hard to deal with is the fact that I find it hard to relax, concentration tends to be awful as well, normally when I cant sleep I will read, but the muscle spasms start about then, these problems must have an internal alarm clock of their own of when to being being a pain!!! I wasnt too bad last night, it was about 4.30ish, when I went to sleep, I find if I can get to sleep straight away I can beat the muscle spasms and stay asleep! I sat and watched a star trek film, then "tangled" It was never this bad, I will talk to my doctor, which reminds me I have to make an appointment with him, my blood results are in and the SE somthings are at level 20 according to my nurse, so he will probabley give me Salazopyrine, Ive no doubt Ive spelt that wrongly, but maybe taking a sepressant like that will help in other ways. My nurse always comes to collect me from the waiting room in case I've fallen asleep, do you think it could be one of the other problems? I have AF, Ank.spondelosis, RA, sojgrens, and the latest one added was Sero-negative arthritis!!, sorry this is long winded. Oh, I have "A" level (that dates me) English language, I was always a good speller, now its shot to pieces and I really have to think about the spelling, not me at all!! so you'll have to excuse any weird spellings I come up with. I did give the nurse a laugh though, for some reason I can never remember what the markers they look for in your blood are called, I keep calling them STD's, which they most certainly are not!!. Lyzzie :)

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