Hello,I am new here,and only joined today,so i hope you dont mind me asking a questoin on my first day,but i am truely at the end of my tether.
It sounds terribly silly,but i just cant stay awake,i struggle during the week when my sons come home from school,and end up just dozing in and out,but at weekends when they go on friday morning,i just want to sleep from when they leave until they return monday after school,my dad pops in to wake me up to eat,and go loo etc,but in all honesty i just want to tell him and anyone else who rings etc,to go away and let me sleep,its not that im just tired,im shattered,i havent been out in over a month,and its got to a point that i can manage to stay awake for the max of an hour,then im literally falling asleep on whoever is talking to me,luckily my sons are teenagers and understnd,they are responsible and do not tend to panic,but its bothering me as im becoming so frustrated at just sleeping my life away and not spending time with my boys,or dad,or even staying awake to drink a hot drink,,,I had it midly few months back and my gp said," wish i could sleep that long,i wouldnt complain" i think he was trying to ke a joke,just bad timing..I havent changed my medication in the last few months so know its not that,and havent been anymore depresed ,stressed etc,,so just dont seem to know what it is....any advice or suggestion would be great,or even just to know im not alone with it...
Thank you in advance.
sarah.xxx
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vampy1970
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Hi Vampy and welcome to what I have found to be an excelent site for people with our problems.Mind a lot of us would say lucky you as the majority of us cant get sleep.You don`t say if you have been diagnosed with ME orCFS or Fibroemaylgia for that matter If you have`nt then ask your G.p for a referal to a rhuematologist.Actually falling asleep on people also sounds like narcolepsy(dont know if spelt right) But you really do need to go back to your G.P hun.Good luck and all the best Butterfly54 xx
In the recent few months I have felt similar but maybe not to that extreme. I do work 4 days and seem to struggle on through that but as soon as I sit down in the evening I'm off! Its so frustratinng, my days off if I sit down (which I tend to be more now as Im trying to pace myself) I'm asleep! I fall asleep at the computer even! My sleep at night is still on and off though and never feel refreshed in the morning. Its overtaking my life this Fibro, I've had it for about 20 years but in this last year it seems to have really affected me where I can't try and get on and brush it off!
But Vampy I would get yours checked out and let us know how you get on. xx
Hi hun, I sleep in shifts, I found that having little naps even if its half an hour helps , my normal day runs , Work...4-7.30, come home daughter to school. have two hours sleep some days it can be more , potter about for a few hours then nap for 2-3 hours. then do tea then by 8pm back to bed, usually about every 3 months its bed all day. Its a pain but at least when im awake I can do stuff. I find that you have to push yourself to the limit other wise nothing would get done and im not giving my life up to FM
I apolagize for not putting my conditions,thoughtless of me,,i have fibromygia,costrochondritus,chronic fatigue syndrom,sherumans disease,and ostroprosses,,sorry about my spelling..Was diagnosed for fb and cfs about 8 years ago....
I used to be terribly at sleeping,my gp said it was like babysleeps,,sleep for couple hours awake for couple,etc,but nightimes alot worse...then few months ago i noticed an increase in my sleep pattern and just put it down to the weather,but it increased to an extreme.I do undderstand what you mean butterfly about wishing you can sleep,i used to feel like that,but sleeping to bad as nice as it sounds,it just as depressing,painful and disabiliating,,need a middle...I agree ladydiar,i also used to do that,sleep when the kids at school etc,learning to pace myself,and had it all paced aswell haha...
I have regular hospital appointments to keep an eye on it all,so i have to ask my neuroligist next month when i see him,,i just get so embarrassed,pointing out yet something else that is happening,the list just keeps going..
But a big thank you to you all for your help and advice,its really nice just to know there are people who actually do listen.
Hello Vampy and welcome. Asking and answering questions and supporting each other is what this site is for. You sound more like my sister than me and I am supposed to have FM and she is supposed to have ME. She gets this tired when she over does things, which she always does so its a mad cycle. She manages to work though, but would sleep otherwise. I am wondering whether your meds are right too as I had too much anticonvulsant and found I could not keep my eyes open! Amytriptyline will send you to sleep if you have too much of it. But I agree with all of the others, talk to your doctor.
hi vampy ahnd evry one else i too have just joined i too struggle to stay awake though not as eztreme as you i fall asleep mid sentance we put it down to meds .as i was only xjust been diagnosed with mf/ cfs.it has taken doctors 21/2 years to diagnos me all the info i was given was a sheet of paper from nhs direct which gave me some of the symtoms which seemed to fit as we thought about it i was always tierd befor i started on the med s just by chance i was already on evrything to treat these conditions and that was it all iwanted was a doctor to sit down and explain things to me as i already had been dignosed with arthrits in my spin and many other joints and scolosis in my spin so i dont knowwhat pain is from what all they seemed to do was give me more meds i am on a very high dose of morpnin amatriptylin gabapentin and variose other things to deal with side affects i have learnt more today just from reading questions and anwers on this site and hope to learn more sorry this is a bit rammbling but i its nice to know there are people who understand how i feel thans toeyryone for this help
Well as suggested i did speak with gp and he to thinks its the narcolepsy,,will get it checked in few weeks,so thank you all for suggestion,,,,i went to the eye hospital today,as i have seemed to lost my eyesite in my left eye,after it going very red,,,they have found a lump behind my eye,,so was due to have some scans etc,but it turned out i was allergic to the dye they put in you,so i couldnt have it done,so they calling a specilist in to sort me out,,sigh...It was and is sooooooooo great to have people to talk to and share things with,im sure you all know what i mean and how isolated it can become,i am pretty disabled,andhave a carer,domestic helper,and a escort/companion,now and then,,,which in itself very frustrating,as it makes me feel very out of control of my life..but hey ho...
Welcome and hi linit,,lovely to hear from you,and sorry to hea it took an extremely long time for them to diagnose you,i to when i got diagnosed had the hard struggle of actually finding out whats what etc...and as you have said this sigte will and has certainly helped me in only the few days ive joined..
i am the same i find it so difficult to stay awake during the day, i get told im lazy but i literally just feel so drained that i have to sleep, i have fibro but havent got to see the neurologist because he wrote saying he didnt think my symptoms were of cfs although i went to a concert on sunday night, didnt drink any alcohol and was bedridden for two days, absolutely exhausted to the point that i didnt get up to sort my children out for school, i could just about get up to go to the toilet then back to bed and straight back to sleep, i feel inadequate as a parent as i just find myself sleeping all the time i actually feel sorry for my seven year old son who says mummy sleeps all the time because she is not well bless him, i desperately need help but i feel like im banging my head against a brick wall trying to get a diagnosis. my children have had the past week off school, my car is off the road and its two busses to take my youngest to school which sometimes feels so hard to contemplate. its just a nightmare it really is,
Oh dear mumziepauline,,you sound like me a few years ago,,my children were about the same age,,,the way i coped and didnt feel guilty was i went to a group called young carers,,the children obviously do not have to be carers,but what it does is take them on holidays,days out,so that the children have lots going on,also they notified the school,and when i wasnt well enough to take the boys to school,they arranged for a parent or staff to collect them and bring them home,they were very understanding,also if the children were concerned etc they could go to a teacher and explain,,also the school gave the boys leeway with there homework,as it was difficult for them to concerntrate on homework when im laying on the sofa feeling poorly or asleep,,young carers is in all areas i dont know where you live,but it is run by the prince trust,and i would highly recommend them,they are a great help and my kids loved it,and every year they took the boys away for a week,on a adventure hoilday,the honepot i think the holiday was called,also the boys realized that there mum wasnt the only one who is ill,and they dont feel so isolated,and they actually found that quite a few of kids at school were wit the young carers so they made extra friends,which helped me,cause if i was poorly one of the mothers would have mine for tea,and if i had a good day i would have there kids for tea,,we helped one another out...
As for other help,the biggest help i got was from the council,,go to care dept,and they will send you a self assessment form,then they come out to chat with you,and see what they can do to help,,i was in a home which wasnt ideal for me as i cant walk upstairs so was sleeping on the sofa,they wrote letters etc and now i live in a flat,ground floor,they put rails etc in to help aswell,they notify you of what your intitled to eg free bus pass,,and free bus or train passes for the kids,which i didnt know,,they will also see what help around the home like rails etc and kettle pourers etc,just to make your life easier...i hope i have helped a little,its just couple of things i found made my life easier,espicially being a single parent and only a dad as family..
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Awake and grumpy!!!!!
i cant do this anymore
Hello all awake again.
anyone else awake in pain?
