what time do u get up in a day - Fibromyalgia Acti...

Fibromyalgia Action UK

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what time do u get up in a day

diane63 profile image
31 Replies

most days i dont get out of bed before 12..

a few reasons i think are

lack of sleep during night

pain during night and awakening in morning

nothing to get up for

or has my body just got used to awakening at this time.??

i am not a lazy person. honest.. but most days i wouldnt get up at all, i start feeling guilty and embarrassed if a visitor comes to visit that i am still in bed..

i have tried and tried to set a alarm or get up with family, but what happens is, i then end up sleeping 2 hours after getting up and sleeping for hours..

is anyone else like this???

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diane63 profile image
diane63
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31 Replies
rosehip profile image
rosehip

I dont get to sleep till about 3 or 4 am anf i wake uo about 10 am but dont get dersse somedays till lunch time . i used to get up at 8 and get my house work done and take dogs a walf before 10, 30 , HOW THINGS CHANGE X

66Amanda66 profile image
66Amanda66 in reply to rosehip

i am exactly the same and i totally sympathise, i get up at around 1pm ish, i feel like most of the day has passed me by and it gets me down xxx

diane63 profile image
diane63

they sure do... my sister wanted me to go on a wee holiday break with my husband and hers for our birthday in march.. but i didnt go. because i new she would be up at around 8am and looking to go out for the day. which i can no longer do.. thats when u know its not worth going away. ur paying a hotel a lot of money for u to be lying in a bed... things change yes rosehip.. but cant we get a wee break from this.. x

Sarah-Jane profile image
Sarah-Jane

I still work so I set my alarm for 6.55 so I get several goes at putting off when I get up so my hands have time to unlock! I have to be up by 7.15 or I will miss my 8am leaving the house deadline. Work begins at 8.30 and I finish and am on my way home by 4, which takes about 20mins. I then spend time relaxing and take my meds at 7pm, in bed for 9pm or I cannot manage the next day. When there are no work days I get up 8.30am latest. I have found that if I let things slide I hurt more as my body does not like laying still so long, I get migraines and bone ache!

If I miss my 9pm deadline by more than an hour I can forget a good nights sleep. If I am in bed and settled by half past 10 I cannot stay awake. My tegretol may be of extra help there though.

I am on Lyrica with Amitriptyline to help me sleep and with my restless legs, I sleep on my back and sometimes my body lets me sleep on one side, my left only, and I sleep with my legs raised and my shoulders raised too [reflux].

Does that help?

sheelagh profile image
sheelagh in reply to Sarah-Jane

I am like yourself but i did not like Amitripty i take tramadol 200sr morning & night and for some reason on my left side and i sleep with three pillow or i would never sleep

Jane64 profile image
Jane64

I have been sleeping in til midday or later for several years but since starting my pain management course I have been re-training my body to get up earlier. I started by getting up half an hour earlier week by week. At first it was really hard work but as time has gone on it's got easier. I have had a bad week when I had a throat infection and it hit me hard and knocked me back quite a bit and I had to start again.

I'm now getting up at about 9.30 - 10 am and I feel much better in myself and I'm sleeping better.

I have also had my night meds changed from amitriptyline to Nortriptiline and that has taken away some of the 'hang-over' feeling that I used to get with Amitriptyline.

hope this helps.

diane63 profile image
diane63 in reply to Jane64

maybe i should try this.. x thanks x

soulsusie profile image
soulsusie

I do set an alarm on my mobile and I never remember turning it off so if my Dogs don't wake me up sometimes its around 10am when I awake but because of Fibro and M.E> I am asleep again as soon as I sit down again!!

annemcc profile image
annemcc

Hi my alarm goesoff at 6.15 to start work round about 7, that is me until 3 in the next couple of weeks it will be 4 or 5 finish.

take my tablets amatriptaline pregabalyn tramadol at 7 pm go to bed round about 10 then start all over again.

the weekends i cant really lie in bed my body ends up in agony so have to get up before the pain kicks in! anne xx

foxycoxy profile image
foxycoxy

Hi

I work and have to set my alarm for 5.20 am so that I have some time to sych myself up for the day, I work from 8 am - 6 pm and get home about 7 pm, sit down and have a real hard job to keep my eyes open so have early night.

Weekends and days off I find it very hard to get up and sometimes don't wake up till 11 am. Like you Rosehip, 2 hours later iI can be sound asleep for another couple of hours.

I always used to be active, running around with the kids when small, mass cooking and aerobic exercise at least 2-3 times a week.......I want my old life back please....this one doesn't suit :( xxx

Hello there! I was getting up at 2pm and sometimes later in the afternoon recently and had been doing this since last Summer. It really affected my quality of life, I felt I wasn't really achieving much. Getting dressed ready to cook dinner for the family, always behind with the washing and ironing. I had to give up the job I loved too. I read an article a couple of weeks ago about the ideal time to take my medication and it made me think that perhaps this had something to do with me feeling so utterly zapped the following day and feeling like I was in a spiral. To cut a long story short, I spoke to my GP (which is always advised first), and now take my Amitriptyline at 2pm. By midnight I am ready for bed and I fall asleep quite quickly, whereas before I was taking my tablet at midnight - 2am and feeling terrible the next day and thereafter. Now I am getting up at 9am in the morning which is vastly improved, washing and ironing all done, enjoying cooking again, even dyed my hair today and managed a walk on the treadmill. I have more energy and my quality of life has improved, I am "pacing" again and I feel more like "me". The point I am making is that it is possible to retrain your bedtimes and waking times. If your routine is all over the place like mine was, please have a word with your GP and try to restructure your times. It can work! Best of luck everyone! :) :)

kraftyk8 profile image
kraftyk8 in reply to

Hi Libby,

I think that is the most positive and helpful thing I've heard on this subject. Thank you :)

What dose of Amytriptyline do you take? My GP prescribed me 25mg, that knocks me out in about 20 minutes, zombies me the next day until about 4pm and leaves me bouncing come midnight! I think 10mg might be enough.

happy hugs, kate

Jane64 profile image
Jane64 in reply to kraftyk8

I used to be like that on amitriptyline. I was on 50mgs and still not sleeping well. My pain consultant recommended changing to Nortriptiline instead. I did and I take 25mgs at 6pm each evening. I usually go to bed anywhere between 10.30 and midnight and usually fall alseep quite quickly and rarely wake during the night. I can also get up earlier and the biggest change is that nortriptiline doesn't leave you with that horrible groggy 'hang-over' feeling like amitriptyline is notorious for! Have a chat with your GP and see what he/she says.

take care of you x

kraftyk8 profile image
kraftyk8 in reply to Jane64

Oh thanks for that, I will.

you too x

hi well i go up to bed at 11 to 11.15 pm and i am awake foat least 2/3 hours then i get 2/3 hours sleep but that is not a solid sleep i get up between 4.30 am to 5 am every day in fact i am seeing my gp soon to see about some sleeping tablets as it is getting silly now.love to you diddle x

Kerry29 profile image
Kerry29

hi w

i am the same. i have to go back to bed after the kids have gone to school or i have come home from work. I only work 7hrs a week anyhow as i can't cope with anymore hrs then that. trust me, ive tried to work harder and more but i feel very sleepy then and in alot of pain.

love kerry x

jazher profile image
jazher

Hi dianne,

I have kids so i have to get up. But i have to set my alarm an hour before i get up as it takes that lone to muster up the energy to get up.

I always think i will go back to bede when the kids are at school, but i never do just lay on the sofa through the day.

My partner brings me my tablets in bed on the weekend s, so that helps me get out. But i hate getting out of bed, i am always so tired.

hugs, kel xxx

I wake up quite early , normally around 6.30 to 7 when the dog wants out and starts whining . It takes me hours to be fully awake and to unstiffen my joints and muscles though so I normally make it out of bed by around 10 ish . It then takes me another hour or so to loosen up enough to do anything so I'm fit for human company around 11.

This present weather does nothing to encourage me to get up though , I find the sound of rain sends me to sleep and makes me feel like having a duvet day . It's pouring down here again today so I'm planning to have a restful day.

xx

kraftyk8 profile image
kraftyk8

Hi Diane,

My lovely husband usually wakes me up around 8am, then I snuggle on the sofa with plenty of tea, take my breakfast cocktail of drugs, have breakfast and watch tv until my body and mind are in sync and ready to move, around 10:30

I don't allow myself to snooze during the day because at the other end of the day, I'm awake until 3:30-4:00am anyway. I think if I snoozed I wouldn't get any sleep at night at all.

As it is, I feel body exhausted from time to time and have black rings round my eyes as a permanent feature.

Good sleep hygiene is really difficult as I can't relax in the evening whilst my husband is channel hopping or moaning at me because what I would like to watch is rubbish. I can't read a book as I can't remember what I read on the last page and I can't get in or out of the bath.

However, Libby has given me some hope and I will seeing my GP soon, so I'll add her suggestion to my list of things to discuss.

Happy hugs, kate

sleepalot profile image
sleepalot

I thought it was only me. I am on a low dose of amitriptyline taken at about 10 pm and nod off at about 2am . I struggle to be up and dresses for my dog walker at 10am and am usually still in pj's. Most days Im asleep again at 1.30pm. Family just think im lazy or "given up" I feel really low at the moment. Need hugs' Caz xx

jazher profile image
jazher in reply to sleepalot

I just wanted to send you that hug you needed hun. kel xxxx

diane63 profile image
diane63 in reply to sleepalot

hugs from me... its terrible eh... i have tried getting up early but sleeping within 2 hours again...

in reply to sleepalot

Hugs from me too Caz

xx

kraftyk8 profile image
kraftyk8 in reply to sleepalot

have a snuggly hug from me too!

Ermintrude75 profile image
Ermintrude75

Hi

Since I went on the amitriptyline (i take it at 1930 or there abouts) I go to bed about 10 sun through thursday. And I get up between 715 and 8am depending on how tired I am. Weekends I sleep through till 9. But every morning I take my time in waking up and getting ready. x

diane63 profile image
diane63

thank u all for answering... very much appreciated xx

Chine1 profile image
Chine1

I am like that and feel the same. If I overdo it (and it doesnt take much) I can end up in bed for days on end.

rubycat profile image
rubycat

Hi Diane

I used to get up and stay up in a morning, but I now get up with my husband and daughter at 6-6.30 am and get them off to work and college, then find that because i have little sleep during the night I have to go back to bed for a couple of hours. I agree with others that it gets really hard to shake off the foggy head and get dressed etc.When people call round and see me still in my dressing gown at 11am you can tell they think you are lazy. I have given up trying to explain because they just don't try to get it. I am now past caring. i am not going to waste what little energy I have on people who are supposed to care about me and understand. Let them think what they want.

Kerry29 profile image
Kerry29

Hi,

I can't say it better then that rubycat. Let them think what they want.

from kerry29

diane63 profile image
diane63

thanks for u all answering.. i really appreciate and will try some of your tips xx

melyssa_joy profile image
melyssa_joy

Hi there,

I am new to this forum as I have just figured out that my the pain and lethargy that I have had for nearly 3 years is not just chronic pain from 2 car accidents I had in 2009. I also lost unexpectedly lost my father and my fiance left me that same year. I thought the pain in my neck and back and now my feet arms and legs were just a result of the car accidents but just learned this week that fibromyalgia often develops after physical or emotional traumas (both of which I had close together). I kept working (forcing my butt out of bed no matter how I felt) and held down a job, however was in constant pain. I was going to phyio therapy 3x per week for nearly two years and getting little to no relief. I was laid off from my job in June 2011 and took it as a both a sign and a gift to try to see if taking time to heal my injuries would make things better. It has not. It's coming up to a year that I have been off work and I still have pain (all the fibro trigger points) chronic headaches and the fatigue and fog. I get up between 11 and 12 these days. For a while I was sleeping until 12 or 1. Sometimes I force myself to get up before 10 just to feel normal and not so much like a bum. Now, that I realized that it is Fibromyalgia that I am dealing with I am less hard on myself. I used to feel guilty for sleeping in, but on my bad days it makes no difference if I get up earlier because I just slug around dragging myself to get anything done. I can't seem to function with less than 10 hours or sleep these days and even then I am always yawning and my eyes feel heavy. On the days that the body pain is well enough that I don't have to lie around all day back or rolling on tennis balls I still feel super tired in my head and eyes. My question for you all is how do you hold down a full-time job when you feel this way? I have had an amazing career opportunity (job interview tomorrow) but I am terrified that if i get the job and try I will:

a) not be able to get up and be at work at 9 am

b) be a space cadet at work if I wake up at 7

c) be a terrible employee because I am distracted by the pain and tiredness

d) be making silly avoidable mistakes and struggle to concentrate and organize and remember things because of the brain fog

I am relatively young (31) and want so badly to get back to a normal life...working and having energy to go out with friends and exercising the way I used to and just being normal and healthy. I don't want to pass up on this opportunity because it is for a company that I have always wanted to work for and a great way to get my foot in the door but I also don't want to burn any bridges by being foggy and tired and unable to concentrate and constantly making unnecessary mistakes.

Does this ever go away or get better?? It is so hard because it is so unpredictable. Some days I feel not so terrible (and get optimistic about my future) and other days my head pounds and I body aches and I am so tired that just looking at a computer monitor or tv feels like it is burning my eyes.

I just want my life back and don't know how to plan for my future with this thing.

Thanks for all your advice and insight. Any help would be greatly appreciated!

Blessing and health and happiness to you all:)

Also, I take Cymbalta for pain and depression and Restoral for sleep. I also take Arthotec because I also recently learned I have osteoarthritis in my toe and can hardly walk without the pills to dull the pain which makes working hard too. I've tried ambitryptaline and nortryptaline but that would make me sleep for 12+ hours and I was always groggy.

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