How much sleep on average do you mana... - Fibromyalgia Acti...
How much sleep on average do you manage per week (in hours) and what main symptom may be the cause of any problems getting to sleep?
Mdaisy389 VotersPlease select all that apply:
I put 'other' as its a mixture of the 3 - sometimes all at once or 1 night 1 and other times the others
pain often asleep but never in a deep sleep according to my husband who is my full time carer.
Thats really shocked me, I assumed most fibro's slept a lot. Not thst it makes the slightest bit of difference, I am permanently exhausted, with occasional bouts of merely tired. Suprising.
We might spend a lot of time in bed and feel tired, but we don't get as much "deep" level sleep where all the physical repair takes place. Most probably because the brain is busy concentrationg on pain in the backgrownd. We will think we have been asleep when in fact we have only stayed in the light stages of sleep, so will find it puzzling when we feel tired. We tend to get a lot of dreaming in, however, which can be either nice or bothersome 
Sometimes, in the morning I'll feel terrible and yet I think I've slept, but my husband says I've been talking and moving around and not properly sleeping. If I think about it, sometimes I remember keep wakeing and dozing. Sometimes in the day its just like losing an hour. My brain is never really clear.
It seems I have a kind of locked in syndrome, I snore and ppl will swear blind I have been sleep, but I can hear myself snoring and everything going on in the vicinity, I can tell ppl what they have been talking about etc, I cannot move or wake myself up, I need to either go toilet which luckily I need 4/5 times a night or my name spoken for me to unlock the body paralysis
That's exactly what happens to me. I really don't understand what this is.
Hello Caroleb1960,
May I ask, is this every night or only in attacks or episodes after activity or a bout of Fatigue maybe?I wondered as I have not heard a member mention this kind of problems before.
I look forward to hearing from you
Best Wishes
Emma
FibroAction Administrator
I have a very similar situation with a feeling of creeping paralysis that eventuallly puts me into a semi-sleep or sometimes into a deeper state. I often wake needing to go to the toilet but not able to move for up to 2 more hours, when my bladder is hurting so much that I can hardly bear it. Yet if I mentally will my arm or leg to move to start to get up, I can't. I have had this for the last several years. When the creeping tingling, pressure starts (usually in my legs and feet, but sometimes enveloping my entire body, I know it is likely going to lead to the deeper state for a period of minutes to hours, and at that stage I can sometimes get myself shaken awake and go to the toilet. It usually returns as soon as I have come back to bed. I am almost entirely bed bound now, but when I wasn't it still happened with the same regularity or even more--probably because I was pushing myself to do more than I could manage every single day. I have met another ME sufferer in an online forum who said he suffered from the same thing for years. He is also a severely affected person who is close to bed bound and needs a carer. He asked me if what I feel is a sense of pressure. To me it feels like a bone deep electric shock that paralyzes me. But when I heard him call it extreme pressure, I realized that pressure is another way to describe it. It feels like I've stuck my hand in a electric socket and been knocked unconscious and then encased in steel. I have come to just accept it and let it be, instead of feeling the terror and impulse to fight it that I used to get. It's not 'fightable, but you can with a gentle attitude learn to sort of manage the way it comes over you.. like a bit of delay or shake yourself out of it temporarily. It seems to me when I think about it, that the body has reached a point of exhaustion and this is how it copes in its compromised state, for someone with our illness. I have no diagnosis of ME/CFS but I have read something similar to this on a list of symptoms on a ME website. Until then I thought I was the only one who felt this. My doctor just gave me a blank look when I tried to explain it. She showed no interest or concern in looking into it. I have now changed doctors and will talk about it with my new doctor when time permits.
This is me all over and my daughter says that Iv been sleeping wen Iv not I also can tell what everyone says also 
To prove my point I totally concentrated on a conversation and repeated to my family members what they each had said,
This board is amazing, I genuinely thought I was just wierd at sleeping but every single thing written I can honestly say happens every time I sleep, like I'm still awake but can't move or anything, I have bladder problems also so waking up too late is a large problem for me, I've tried everything from vitamins to sleeping tablets to staying awake to sleeping more.. Glad I'm not alone e but not so glad others are suffering from this too. Damned if you sleep and Damned if you don't right..
I have this happen to me too! I used to 'sleep' for 2-3 days straight, just waking to go to the toilet....! Now I wake every morning when my 2 year old grandson visits, as soon as he shouts, "Nannie wake up" I am awake! Strange and quite scary sometimes.
This is actually called sleep paralysis. Sometimes especially if I have a catnap during the day I feel unable to get out of my sleep. I know I'm asleep but I want to wake up but can't. I find myself panicking wanting to shout out but can't. Apparently a part of the brain concerned with sleeping lags behind other parts so you don't wake up properly. If it happens now I just try to keep calm and tell myself it's ok I'm not having an out of body experience.(that's how it felt, I thought I was dying or being sucked out of my body -scary!) Google it. nwg.
The Skeptics society in Sheffield is doing a talk on Sleep paralysis, I am hoping to go. Its on Monday eve at the Farm Road Social club, if anyone knows it, just on the edge of town. If anyone is close by then, the link can be found at:
sheffield.skepticsinthepub....
XG
i sleep but just a light sleep and wake tired .i also have to pee a lot at night so that stops my sleep .leg cramps cant find a comfortable place in the bed ,
No, sleep is difficult when you have fibromyalgia. I average 5 hours at the most on a good night, but sleep quality is not good, that is one of the reasons why sufferers of fibromyalgia always feel exhausted.
Did you ever see the film with Robin Williams in it as a dr who has a ward of patients that are all asleep and can't wake up? Well according to my Gp it is a mild form of that illness, it is horrible and scares the living day lights out of me, I have actually panicked, I have been screaming in my head, cry uncontrollably when I became conscious
Hello Caroleb1960,
I'm sorry I haven't seen the film , does a form of Dystonia sound right ? Guessing now?
Emma
Hello Caroleb1960,
Awakenings? is this the film you mean ?
I just googled it, Thats about Encephalitis? Does your GP know how regularly this happens or to what extent?
Here's some information about it;
patient.co.uk/health/enceph...
Emma
Hi Emma,
I read up on Dystonia - very similar. The noise in my head starts with conversations that i've had that i'm going over then it turns into what i can only discribe as "white noise"?! I dont have TV or music in the room, and dont watch late TV to try and switch off (my head that is!). I've tried to make my bedroom a tranquil place so that i can go off to sleep peacefully - no such luck! Fibrofoggy14.xx
Hello FibroFoggy14,
Interesting, I have never experienced this luckily as by the sounds of it this is very distressing.
I hope you slept well last night
Emma
FibroAction Administrator
i sleep little and often always tired after around 3 hours im up and cant get back off again for at least an hour if not longer. which then gets your mind working which makes matters worse. i can sleep more often better in the day. when im tired though i must go to sleep or i get confused and muddled and very depressed. does anyone else find this
Hi welshladj, I can relate/identify with you, I can"t sleep @ night, bolt upright wide awake some nights but in the day I can"t keep my eyes open. I get so fatigued that I get confused, slur on my words as if I am drunk in the day, although I don"t drink!
I seem to get a more restful sleep in the day, rather than night time when it is as if someone switches a Computer on in my head and my mind start to run away with me!
Lovely to meet a fellow Welsh-bod!
Hope you have a peaceful nights sleep
god bless Lynn
I put other as I am almost always exhausted and sleep does not refresh me much at all. I tend to sleep around 12+ hours a day, I can occassionally get by with 8 hours for a day or so but then have to sleep more over the next few days.
Hi Mdaisy this is every day/night, I'm exhausted. I have to have a sleeping tablet 3 times a week just for a few hours of nothingness,
Fibromyalgia
I am tired a lot of the time on most days and because I am retired I am able to sleep as long as I want, currently it can be 12-14 hours each night although I go to the loo 3-4 times for other reasons. I am generally in pain before going to sleep and almost always in pain whenever I wake. Walking to the loo without supportive shoes is particularly painful due to plantar (heel pain) and general stiffness, going back to sleep again means finding a way to ease the pain first.
No it isn't distonia, it is like locked in syndrome, I haven't had a stroke/ brain injury but I do have severe debilitating migraines, obviously I have pain and restless leg etc which I have to try to zone out or it becomes more intense with me unable to do anything about it
Thank You for your reply, please see above about the film
Just realised I haven't asked if you mind sharing your experiences to help others? I don't get these and so I cannot imagine how you feel. It does sound very scary and I am sorry you seem to have these quite regularly. I cannot help but wonder if this is the same as Julesq27 or not ?
Many Thanks for your comments
Emma
Hello All,
Did you know that Disrupted stage 4 (deep) sleep, meaning that sleep is non-restorative, even if the person with Fibro sleeps through the night. Two studies have shown that artificially disrupting stage 4 sleep in a similar fashion for 3 or more nights in a row will lead to Fibro-like symptoms developing in healthy people (Lindsey Middlemiss Founder of FibroAction 2009)
fibroaction.org/Pages/What-...
From my personal experience only I find if I sleep better usually dream which I do less often than I did before Fibro, I feel less pain or discomfort in the morning. Anyone else?
Many Thanks for your Vote
Emma
FibroAction Administrator
Thanks for that Emma, I don"t dream any more or very little. My son also has Fibro and he says he does"nt dream either.
Thanks for interesting Facts, you are doing a fantastic job as volunteer, I hope you enjoy it, I can relate so much to you and all your excellent advise you so freely give out to us all.
Many thanks, Pray you have peaceful nights sleep!
Goodnight,
God Bless Lynn X
Hello Bettybaby,
Such very kind words, Thank You so much.
I sincerely do enjoy my volunteer work for the charity as Administrator & my volunteer role here too.
I am glad I am able to provide the relevant advise from the website as the discussions come up.
It's strange about the not dreaming thing, I just wondered as I definitely dream much , much less. Interesting, I expect a sleep studies Doctor would maybe be able to explain this coincidence maybe?
Thank You for your Vote.
Sleep well
Emma
FibroAction Administrator
I rarely dream now either. In fact the only time I do, is when I've had a couple of glasses of wine, and then sleep is really torturous and broken with vivid often horrible dreams. I try and avoid alcohol now. I think the only reason I get any sleep is because of my bipolar medication, which is a kind of tranquilliser that switches off your thoughts, so you become really drowsy and vague. I get about 5 hours a night on that, but without it I wouldn't be getting any sleep from pain and racing thoughts. Hugs, Alex xx
I dont get many dreams now due to amit. Plus, since I stopped tramadol, i dont get the nightmares off that now. Havent been able to nap in day for while so have been sleeping thru., instead of waking & realising i am just staring at the ceiling. Just seen the time, must get to bed b4 im too tired to sleep! Night all, Julie xxx
Hi Julie63, It is dreadful when you just can"t sleep, left staring @ the ceiling. I don"t have nightmares any more since coming off Tramadol, in fact I don"t dream @ all now!!
Just a suggestion but have you tried Meditating to sleep, nothing too deep. I use my I-pod every afternoon and night to meditate to sleep it really helps me. There are some excellent ones out there from Relaxation using "Breathing Techniques" or "Calming ones, some with sounds of water or nature or in general just soft easy listening music! It is worth a try if you hav"nt already tried them. I can recommend a few good ones if you are interested.
Wishing you a peaceful nights sleep (we live in hope!)
God bless Lynn
there are delta wave music compilations, free on youtube, they can last up to 8 hours - I find this useful - does not send me to sleep but helps keep my mind off the pain so I get some rest if not sleep.
I like the sound of this. Do you leave the computer running to listen to the music or download it onto something else? As 8 hours would be a huge download?
Thanks
Ken x
Hi Ken, I leave the computer on and use wireless headphones.
most of them recommend using headphones as they use a difference in sound between the left and right channel to help relax you.
I am not sure if you can download it - I just use the free ones available on youtube.
there are lots out there , some are just the waves which does not help me as it is like listening to nothing :-), some have music, some have white noise or other sounds - some are an hour some are longer - it is worth having a play.
if you search youtube for "delta wave binaural beats"
if you need waking up, try the theta waves , the alpha waves are for wakeful relaxation - but I find the delta sleep waves to be more relaxing.
there is a certain throbbing inside your head that happens after about 30 minutes - but in a nice way - of course it could just be my inner hippy, but have a go and see what you think
Hi Mrs_Somerset
I sincerely hope that you are feeling as well as you possibly can be today?
Thank you so much for this, I will check out the sounds, I have got wireless headphones. I think this might help me, thank you so much.
Take care
Ken x
I found that my computer goes to seep before I do! However I am going to try downloading from Youtube and making a cd of the sound to play on a continual loop on my DVD palyer in the bedroom.
I have been making 2 minute video clips myself over the last couple of years with the aim of putting them on Youtube. Whenever I get somewhere quiet I video it, to record birdsong and water sounds etc. I will get round to it!
Hi Emma
I'm glad my dreams have subsided because every morning I'd wake up feeling like I'd just been involved in an action movie................ exhausted and fatigued!
Also, confused too sometimes 
I can wake up several times and go back into the same dream exactly where it left off too and always in colour
It's quite a relief not having that every night anymore!
xxxsianxxx
Hi, Pain is one of my main issues, also I can"t get in a comfortable position, it takes forever. I also sleep on a King-sized Quilt folded into four for extra padding. I have Bursitis right hip which is more painful when I lay down. I am also extremely thin (Have Anorexia) Consultant told me I have no natural Padding so my nerve is exposed, like an exposed nerve in a tooth, pain very intense. Injections work for a while but soon ware off!
I hate the fact I am sleeping a foot higher than hubbie, can"t even roll over for a cwtch, also have a "Drat Excluder" underneath duvet to stop me rolling over (that is due to hyper extention).
Apparently My hubbie knows when I am getting up or attempting to go to the bathroom early hours as I snort like a pig, charming!! I did"nt believe him until he taped me, also I try to get up and go back to sleep so I am half in the bed and half out fast asleep, does this happen to anyone else?
I fell asleep one night on the loo with my head resting on the sink as a pillow, I was there for 3 hours or more, boy did I pay for it the following day!!
Wishing everyone a peaceful nights sleep (we can but hope and Pray!!).
Goodnight
God Bless, Lynn X
Hi, Lynn, I cackled when I read about you snorting like a pig when you are ready to get up. I probably do things like that but I live alone so have no one to tell me about it. And I also have fallen asleep on the loo with my head against the wash basin or the wall. I wouldn't be surprised if I also stayed there 3 hrs. It's so difficult to deal with all this. Poor you. A friend I had a few years ago bought me a memory foam mattress, and it is so much more comfortable than anything I have ever slept on. It really helps a lot. If you can possibly find a way to pay for one, it's worth every penny, and I was so lucky that she got a large sum of money and decided to share some with me.
Hi Budgiefriend, Glad I still make some laugh! I have been told about these Memory-Foam mattresses are of great help to us. I was thinking of a Memory-Foam Mattress topper, single-size to put of my half of the bed to help, Our birthdays are coming up soon and always get money as opposed to presents, hopefully between the two of us, we"ll have enough in the "pot" to purchase one then.
Your friend was extremely kind to help you out with your mattress. Thanks for the advise, I shall take it on board.
Sending you positive healing energies. Take care of yourself.
I don't know from first hand experience, but I am told that some memory foam is a lot better than others, as the inferior kind can create a lot of heat and cause you to sweat. Mine does not. It is best to do a thorough search not only for quality but for cost, as the range of prices is wide, and I believe that some good quality ones can be had for a reasonable price. I am sure that the topper will help, but I'd go with the thickest you can afford, especially if you are a bit on the heavy side like me. Best wishes to you! Thanks for the good energy, too!
I said 'Other' because often I just don't know... I can be utterly exhausted, to the point where both physically and mentally I have nothing left: but even when I lie down, I can't sleep.
I may have 1 really good sleep a week which means I'm totally exhausted as I have not slept until 5am and then I'm up from 9am- 10 am. If I have a sleep for even 10 mins during the day I'm up all night then. You just can not win. Welcome the fibro club
I have various painful and I'm never sure which one keeps me awake because of the pain. I have tried everything from sleeping pills, hypnotism to acupuncture all to no avail. I have even been told by a consultant to "learn to live with it" but at 22 how do I. Any suggestions out there before I go completely mad.
The Bishop
I wrote pain as I cannot lay on my back and it stops me getting to sleep. When I finally nod off, I wake up unable to breathe due to my COPD and the pain in my chest is horrendous. I have constantly discussed this with my 'medical Specialist' who has given me so many different medications to try but none of them seem to work for longer than 3 months.
My "other" vote includes both pain and overactive mind, some days one or the other, some days both. Some nights I can't sleep more than an hour. If I'm exhausted enough, it wrecks my functioning and threatens my relationships. Few people have any real idea what I'm experiencing. Many still lump it in the "it's in your head" category or are at least sure you're exaggerating.
You're not alone Clare. And it is not just in your head, and it is not your fault. My sleep problems mean i am tired all the time and am awoken by the slightest noise- this is threatening my relationships with my family because i have a noisy active family who just don't understand about what it's like to be so exhausted that you're desperate for sleep and want to shout at everyone to just be quiet and let you sleep. It has got to the point that every member of my family (with the exception of my mum) has had enough of me always going on about the noise stopping me sleeping (screaming kids and screaming adults)- they think i'm just being a pain and it's all in my head, and tell me to stop being such a freak. Now i spend Christmas and every other holiday alone, while all my family gets together somewhere, and nobody except my mum wants anything to do with me. I'm only 29, and i feel like i have no life anymore.
I am really sorry for that azabeth. At least my fiance gets it the best he can, but like I said, limited. I suppose that's true of any chronic dz. You are too young to be dealing with this much trouble in your life. IK... I can't wear earplugs or cover my head. Soundproofing the room would be the only thing . . . at least I don't have that much noise to deal with. If I were you and had the money (right; like you do with kids and all), I'd spend a few nights every month in a nice, quiet, soothing, luxury hotel with great soundproofing, and get away from it all. Or invest in soundproofing. Easy for me to say. Anyway, I send you all the best wishes and spirits so things will get better.
Various, numerous and inconsistant reasons, ranging from painful muscle spasms, joint pain, racing heart, pins and needles, feeling wired yet exhausted, sensitivity to smells and noise, and much more. No specific symptom and there can be more than one.
I sleep intermittantly over 12-14hrs overnight and can easily catnap throughout the day. I am easily woken and can hear echoes of noises in the background. I never feel refreshed and although not clinically diagnosed, I believe I never reach stage 4 sleep. It's 02:37hrs and I'm here.
I take Loprazolam to sleep, so have no trouble, however pain usually wakes me after 6/7hrs., I then take my pain killers and sit up until the pain eases, then go back to sleep again, which is what I'm doing now.
Morning I can see our sleep problems are quite fascinating. So many of us seem to suffer very similar problems.
I am one of those who manages to sleep for the fist hour or two and thenspend the rest of the night waiting for the time I can get out of bed. I find I cannot lie down because of my neck/back which has nasty deterioration, so I wad myself in a upright position and lie there relaxing, well trying to.
Last night broke the mold and had dreams of lost love ones and they were being bossy. So strange !
I seem to be permenently tired through the day always looking for ways to get energized - could do with those batteries that keep the bunny going!
"O sleep perchance to dream"
xgins
Hi gins,
I hope you are well, as we can expect to be. I can identify with you on this one, usually I don"t have a problems getting to sleep I meditate (personal choice of mine that always helps just listening to Relaxation or soft music). but within an hour or so I am wide awake again, because of the pain I find it so difficult to get in a comfortable position. My poor hubby does"nt have much sleep either as often like now I am still in a "Flare-up", I cannot get myself out of bed, bursitis hips and slipped discs in my spine, so movement restricted! So he has to help me to bathroom. I sleep intermittently throughout the night.
Yes I could do with some of those Batteries the Bunny"s use, most definitely, good idea!!
In my thoughts and prayers.
Sending you positive healing energies
God bless X
When I finally do fall asleep it's only a light sleep where I toss and turn all night and wake still tired xx
no problem getting to sleep anymore, just staying asleep and going into deep sleep. anxiety and/or pain is cause i believe. also have "exploding head syndrome"!
Hi Fibromates
Yep! definitely can hear myself snore; I constantly fidget; although I try to lay still so not to wake hubby, i'm always turning over, moving about as it hurts too much to lie still for more than 5 seconds; get up and stumble my way to the bathroom 3-4 times between 11pm-5am 9approx; I can hear myself breath but my hubby says i appear to be asleep. Its almost as if im cocooned in my own body! I know, weird, but nobody said living with Fibro is easy! Fibrofoggy14.xx
Discomfort is often the worst, I can't always call it pain, as it's often just more general discomfort.... and when I do get sleep - it's not the productive, restorative kind: instead I wake exhausted and drenched in sweat after more vivid dreams than I ever had before I developed FM, even though I'm often only left with the feelings from the dreams rather than knowing what exactly they were about...
Muscle spasm. Unnatural movements in shoulders and neck which affect head.
Fatigue all the time just close my eyes and I'm in cloud nine
My biggest problem with sleep since i got Fibro is that i am completely unable to maintain sleep for any significant period of time- i sleep for up to 2.5 hours at a time, (more usually it's between 30 mins to 1.5 hours)- i have not slept for longer than 2.5 hours for the last 4 years- so i am constantly exhausted to the point that i cannot do anything and only leave the house for hospital/doctors appointments. My sleep is very light and dreamy- i remember my dreams (usually very vivid, emotional, and numerous) every time i sleep, even if it is just a quick nap, which makes me feel like i never get any rest. The slightest noise outside my room will wake me up. And when i do wake up the pain throughout my body stops me just turning over and going back to sleep. While anxiety and pain do make my sleep worse- the lack of pain and anxiety does not seem to improve my sleep to any great degree. I have tried several medications but they have no effect. I now consider sleep to be my TOP problem with fibro- other symptoms like pain, nausea etc, come and go in severity, but for me the sleep issues are constant and completely debilitating.
I wake up a lot due to pain in my left hip which sometimes is a shooting pain, painkillers e t c do not touch it what has caused it I do not know but I suspect its something to do with my job I work in retail which involves a lot of standing and lifting
Well this is quite difficult to gauge isn't it mine is quite variable from one week to the next
I've said pain as a reason why I don't sleep but also other.
I often don't sleep because I'm not tired or because I haven't exerted any energy so I don't need to sleep, but then when I exert energy I become fatigued and I'll sleep on and off for days and be shattered.
Catch 22 Definitely no happy medium 
xxxsianxxx
Kind of get that too. No sleep because not tired because too painful to move so no energy expenditure and wildly variable
I go to bed feeling exhausted, but it's hard to get myself comfortable., lots of pain, and when I do drop off, I'll move, usually putting pressure on to my painful hips or shoulder, and wake myself up again.Then I need the bathroom, and poor hubby is woken to help me out of bed, to get there and back, and into bed.
Then I have to try to get comfortable again,
It's no fun having Fibro!
When I'm having a full blown flare up I get up feeling more tired than I was when I went to bed.
Hi clelle, Ditto! I can really identify with you on this one. I can"t always get myself out of bed due to pain and being so stiff, especially bursitis of hips and slipped discs in back, on top of Fibro/Me/CFS and lots of other medical problems! So I have to rely upon my poor hubby who does"nt get a good nights sleep either!!
I have no choice other than to go to bed to sleep in the afternoon, as I am just so fatigued some days I am slurring on my words, just soooo tired!
Also in the morning, I feel as if I hav"nt had any sleep @ all! Still in a "Flare-up" so needing extra rest, which is getting to me now as I hav"nt dressed or been out-doors (other than hospital appointments) for the past 18 weeks. Not since well before Christmas!! It is making me rather depressed as I want to do things but just have no energy spare. Even a shower of a day just floors me!
Sending you positive healing energies
Best wishes BB X
Hi BB, Thanks for your reply. Sorry to hear that you haven't been well for so long. It's awful feeling so low on top of everything else. Sometimes, I feel like a hamster runing round in circles on it's wheel. It just goes on and on.
I too have bursitis on my hips, and a couple of slipped discs in my lumbar spine area. I have underactive thyroid, and a 5 stone weight gain too, that's not helping matters.
I really hope you are feeling better soon. x
Hi Clelle.
Thanks for your reply also. We do have a lot in common, besides the firbo. The bursitis pain is horrendous, and slipped discs in my 3/4/5th spine, on top of Fibro, does"nt help matters does it?
I have the opposite problem to you I suffer with Anorexia Nervosa, under Specialised High-Risk Eating Disorder Team @ Psychiatric Hospital. I almost lost my life to this insidious Illness was in Intensive Care with Pneumonia, Respiratory Failure, Septicaemia, Sepsis, organs stayed to shut-down in July 2012. A spent over a month in hospital. I am just so grateful to still be here, it was touch and go for a while on Life-Support Machine!
My Fibro went into over-drive, I have never been the same person since. Can"t even drive any more, lost all my independence, I hate the fact that I have to rely upon my husband for almost everything!
He gave up an excellent job with salary to match on advice of Consultant to care for me full-time. Almost in constant "Flare-up" of Fibro, been "house-bound", except for hospital appointments. I have lived in my P.J."s for almost 3 years now!
I get very depressed about the fact I can"t do any thing for myself! Pain is also getting me down @ moment. Probably just feeling sorry for myself today but I think we are all entitled to them @ some point!!
This Wonderful Site is my Life-line to the outside world. Thanks to members who help support me, I can come on here and have a good old moan, feel better afterwards, Thanks to all who patiently listen and support me.
I sincerely hope your pain @ least eases a little and you feel better soon too!
Sending you positive healing energies
Best wishes Lynn
I 'sleep' for 12 hours but wake every 2 hours so get no deep sleep and no restorative sleep. It can take me an hour or more to get to sleep. I do not know why.
Omg I thought every1 slept more, obviously I'm not the only 1 creeping about in middle of night, hallelujah
i don't lie there worrying, I just don't fall asleep, even though I am very tired, fortunately I don't work
Same sort of mixture as Frankiebeee. If or should I say when pain keeps me awake I then start thinking, then get up to do something. Occasionally it's positive like looking at emails from my nutty friends. I've cooked a weeks dinner and/or done the laundry. As I'm on economy 7 that's actually helpful and if I feel sleepy later I don't have the laundry basket growling at me 
If I'm REALLY tired then 10 hours is not unusual but even then never straight through.
As well as restless legs, not so often since being on ropinerole. and overactive mind. I am up and down all night with heartburn, bloating and pains as though I need the loo, weeing every few hours and electric shock like pains if hubby, or the bedding gently brushes against a bit of my skin that is not covered in jammies . Not much hope for me sue
Missed out hot sweats
Wow, what a lot of variety. Like everyone else I thought I was alone in rotten sleep patterns. My problem is mainly my heart racing and pounding and my mind working overtime, pity it doesn't through the day . Sometimes I wake through the night breaking the sleep, or I sleep right through but wake about 6.30 - 7am from about midnight, so feel unrefreshed and lethargic all day. I hope we all get some relief from this, hugs, Linda xxx
I never sleep well,usually because my body bangs with pain but also my mind never swiches off.im always exhausted but i have other promblems as well as fibro.
Yes I'm the same. In a very light sleep and can hear everything going on round me. bUT i also have bouts of sleeping for 3 days. When having a flareup. The nights no sleep iI just get up again ( this can go on 4 or 5 times a night)and go watch TV for a few hrs then I'm exusted for days on end. Viciouse circle. Mostly over active brain and cramps and back ache..
hi there its very rare that I sleep longer than 3 hrs a night the pain can wake me up also my mind gets overactive with worryin how im going to manage I drop off think iv slept alnite only its 2 hrs I get so tired with it al but keep on goin x glo100
My amount of sleep I'm getting at the moment, I'd say about 7 hours a night it's not great as I feel I need 10. So that's about 49 hours.
My bladder keeps me awake. I often feel the urge to go no matter what. I get up about 5 times a night, it's probably around every 2 hours I get up and a little will trickle out.
Restless legs too they drive me mad. Overactive mind, yeah, it speeds along and I can't stop it, either that or sleep simply won't come. I lie down and I can feel is my heart beating in my chest, not fast, but heavily, like a distraction.
Occasionally pain, never agony but just very there, like a distraction. Sensitivity is an issue, if the sheet and duvet aren't pulled exactly right then I feel the...imperfection or whatever can't think of the word...on my skin and that's a distraction at best but painful at worse. Or I feel the eyelashes from my eyes against my cheek and that can annoy me too - it's really very strange. Sometimes the sensation of dryness in my eyes is uncomfortable enough.
Sometimes I feel too hot, sometimes I feel too cold. Oh and occasionally itching.
Yes night time is a joy sometimes and now I'm thinking about it I'm feeling worse and worse each day because I'm not getting enough restorative sleep. It's not good. I would have lied in this morning as I slept better last night in my own bed but I had to get up to catch up with my uni work which is what I promised I would do, and because I have to otherwise I miss the deadline.
Hmm. :/ I don't know. I can't really afford to dwell on it and feel upset at the moment because I have other commitments, but that's what happening. I mean...there's no point in getting worked up about it or dwelling on it but actually...to be fair, it's a real damn shame. At best it significantly reduces my quality of life. At worst I'm simply unable to function and end up letting myself and others down. I really don't want it to be like this for the rest of my life, just the idea makes me feel like a weight pulling my heart down. But I can't see a way out. If I can't get to sleep, how am I going to break the cycle of Fibro causing me more grief? And the worse Fibro gets, the harder it is to sleep. The worse it gets the more stressed I feel too and thus the harder it is to sleep. I find it hard to come to terms with the idea that this cycle has basically gone on for a whole year already, and I'm only 19.
Sorry. Hope this helps anyway. To be fair I think for most people it's all of the above.
truthfully i am so fed up with being tired all the time, i sleep on and of at night i usually wake about 4am every night but although i might look like i'm in a deep sleep i hear all that goes on every movement i hear the cars on the main road from over the fields. when morning comes i'm so weary.to be very honest it is only my faith that keeps me going.
I am not sure how to categorize the symptom that most keeps me from getting adequate sleep. Here is my situation:
As I am in almost constant pain at a medium to severe level, I have learned to sort of block it by keeping busy with other things I do like online activities and creating digital art. I sort of live from my computer, as I am mostly bed bound and have no carer. I have almost no in-person contact with others and no physical contact whatsoever. I have learned to mask the pain by mental concentration or diversion. For that reason, when I shut things off and try to sleep, the pain is prominent, and depression I feel over my isolation and extreme limitations starts to grow. These two combined form a vicious cycle as stress and depression increase the pain.
I often fall asleep with my keyboard in my lap, supported by a bed wedge and pillows. This is not quite an ideal position to sleep, and certainly not with the lights on. But it is like running until you just fall down, instead of needing to work out when you have run as far as you can. I am always operating beyond the pain threshold, so sleeping is difficult to manage. Added to this is the fact that I tend to feel worse after I have slept than if I had not slept at all. Some of my least painful times usually occur between 2 and 7 am. My sleep schedule is a complete mess because of all this. So I avoid sleeping once I have reached a point of lessened pain. When I can't stay awake and just literally 'fall asleep' I sleep somewhat better, although I wake with a sore neck from being in an upright position and I do not think that the lights are good while sleeping.
The negative reinforcement of these patterns is the fact that after I go to sleep I feel worse. This is such a strong factor that I can't seem to manage to will myself to stick to any schedule. When I have tried to force myself to keep to a schedule the really intense periods of pain that I have several times a week were enough to wear me out and cause me to fall asleep when I was supposed to be awake. I literally could not wake up, then, despite setting three alarm clocks.
I do not understand why there is more pain after sleeping than before. But it is a fact which I cannot come to terms with and it affects my sleep decisions along with nearly unbearable periods of extreme pain and severe pain which can only really be borne through my habits of mental diversion and dissociation from my bodily sensations.
I would appreciate having help with this, but am unaware of what might be offered. These are unmanageable problems.
Mine is a mixture. I never settle very early, rarely before midnight and I almost always wake between 4 and 5am and only lie in bed trying to rest, but then its os annoying as if I sit and read or have a cup of coffee, I just doze off. It's hard to give a proper answer.
Hi I sleep 12 hours solid plus at a time , been on lots of pain killers for ages ,when the warmer weather is here and I feel easier then I'm awake more,but I can sleep far too much , but just can't function when I try keep awake ! ,so at moment this is how I am ,
Does tingling fro face to toes 24x7 and stopping sleep catagorise as pain or other?
Very rare I get deep sleep and can't remember the last time I slept through as I have to keep turning because of the aches
The 2 drugs I have for the nerve pain plus painkillers taken at night are giving me a solid nights sleep. I also have 2-3 sleeps during the day. I also developed Epilepsy last month on top of under active thyroid and Fibro so I don't know what my need for sleep is caused by. I am on 2 lots of drugs for each condition as well as painkillers.
As well as my mind staying alert, I have fluctuations in temperature - from being too hot, to shivering (like Flu) even though the room temp is constant around 21 degrees.
I can feel sleepy at around 5 in the afternoon but never let myself sleep in the hope that i will go off when i go to bed. Then i lie awake and cannot sleep my brain goes into total overdrive sometimes over the most ridiculous things at the moment because of the relationship break up then last friday i find out someone has cloned my bank card so i have no money and have to wait for a new card to come through and a pin number. If i do get off to sleep i will wake up in agony with my right knee and hip and now my shoulder have joined the party and my back and i just lie there and cry.
