Sleep problems

All your fibromyalgia experiences, questions and answers.

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Sleep problems

Postby Wackers34 » Fri May 10, 2013 8:32 am

Hi there

Over the last few months I have had shockingly bad insomnia...to the point I am averaging out between 2-4 hours of disrupted sleep...

every now and again I get a 0 sleep night (last night) and I have to function, take my son to school and then look after 2 year old all day.

How do people cope on 0 sleep? How do you get through your day?

For some reason I can't nap during the day (brain won't switch off - never been able to nap during day) and every time i do try and relax body i get jerks and cramps and twitches that drive me insane.

I am on Amitrilyptine 20mg and it was helping me get to sleep at first, but now has worn off. Ive got to point where even sleeping tablets or nytol won't work on top of Amitrilyptine.

Am I normal? Im worried I have some brain problem or that I might die if I carry on like this (bit dramatic i know)....I haven't seen a neurologist about it yet and am seeing the doctor today.

Any advice would be useful...

When I do sleep, it just feels like dreams, but i do manage to cope with my day when i have these sleeps
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Re: Sleep problems

Postby maxtomads » Fri May 10, 2013 8:51 am

I've had that 1-2hrs of broken sleep every night for 2 years now with some 0 nights thrown in. I feel like a zombie. I've discussed it with the gp who gave me a few zopiclone to try but no luck. I just grit my teeth & try to get on with it but that doesn't make me feel any better. Doesn't change anything for you, but maybe it might help to know someone else is going through the same?

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Re: Sleep problems

Postby poocarlin » Fri May 10, 2013 9:08 am

I was put on Pregabalin last year for the fibro. Still in a lot of pain but I sleep. I have never slept and now I do. Amazing. You do have to get through the side affects bit but it's been worth it for me. (Dr put me on Gabapentin first. Awful)
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Re: Sleep problems

Postby painprincess1 » Fri May 10, 2013 9:26 am

Hunnie,i havnt sleep well for years .i was reading your post and thinking omg thats me lol. i never slept last night at all,i never sleep through the night ever.i have 3 teens and a one year old.u cope in fact now if i do sleep i feel worse. i was on Amitrilyptine. but for me i was tired all day. not great with a baby. so i dont take it now,so i feel better off it.i cant sleep in the day even if i feel dead.my brain wont turn off to,if i go and lay down in the day i lay there thinking of all the things i should be doing .fibro is many things and sleep problems is one of them. just as the brain tells the body its in pain it tells itself it dont need sleep .grrrrr lol.your not alone xxxxxx
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Re: Sleep problems

Postby penfriend » Fri May 10, 2013 9:30 am

I have sleep problems too, but then I am old, but it has been over many years. I do occasionally take a sleeping tablet, but only about once or twice a week. I have found that Panadol Night Pain tablets have helped too, they contain the usual paracetamol but with the added ingredient of Diphenhydramine which I believe is an antihistime. I use those in between, and somehow keep going. Hope this suggestion may help. sincerely, penfriend
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Re: Sleep problems

Postby Wackers34 » Fri May 10, 2013 9:34 am

Painprincess,

How do you do things throughout the day? Chores etc? I just feel like curling up and dying when I am like this...

Have you had fibro throughout bringing up your 3 teens?

What meds are you on now, if any?
I am so glad other people go through this (even though not nice) I now know I am not alone :o)

Sorry for all the question..lol
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Re: Sleep problems

Postby whoami » Fri May 10, 2013 10:21 am

I have the same problem with sleeop. Sk your Dr to send yu for a sleep study. I just had one done.

Sleep apnea is a problem a lot witb fibromyalgia have. If you have to his it can be helped. There are other sleep disorders that can be helped.
If you don't get a good nights sleep you can't be expected to function properly. See your Dr luv.
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Re: Sleep problems

Postby painprincess1 » Fri May 10, 2013 10:34 am

deffo like pp said fibro is worse with no sleep.

i take Tramadol and paracetamol two of each twice a day, and a anitdpressent which helps with sleep.i find night nurse helps me sleep.but i stress its only the odd time.and i did have a cold and as it has paracetamol in it u cant take anything else with it.but if i curl up and do nothing i feel alot worse .i also have a hot shower before bed.do go back to your dr ,some things the dr give u do make u feel dead on your feet Amitrilyptine just left me dead allday.xxxx :crazy:
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Re: Sleep problems

Postby Graygirl » Fri May 10, 2013 11:00 am

I've been taking Amitryptiline for a few years now, and have gradually increased my dose to 75mg (it also helps with an inner ear problem as well as acting as an analgesic overnight). I find that this usually works really well for me, and I don't suffer with drowsiness the next day - just the normal exhaustion that comes with Fibro and CFS/ME. It might be worth asking your GP about increasing your dose bit by bit?
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Re: Sleep problems

Postby Wackers34 » Fri May 10, 2013 12:17 pm

Thanks everyone...saw the doctor, she is upping my dosage of Amitrilyptine to 30mg as its still a low dose and i do seem to be able to tolerate it better than some of the other meds...

I haven't taken anything for pain for about 2 weeks, but when its bad, i take cocodamol and I have Tramadol as an emergency, but this one although works well on pain, leaves me restless.

Im on the list for a sleep study through my friend who knows someone that owns one...I do have restless legs syndrome and I guess they would pick things up like this.

My doc is also sending me to a neuro as I have been getting a lot of nerve pain and twitching...she said they can also help with sleep.

Thanks for all advice :o)
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Re: Sleep problems

Postby Wackers34 » Fri May 10, 2013 2:41 pm

Thanks Julia,

Wish I had asked for melatonin now!

Has anyone else had experience with Melatonin?

Thanks :o)
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Re: Sleep problems

Postby lucybythsea » Sat May 11, 2013 7:31 pm

I have quite alot of experience with sleep meds. You could try trazadone - it is a sedating tricyclic antidepressant. I take it and it knocks me out! I have found Amitriptyline worse than useless, and two doctors have told me in the long run it can sometimes make your sleep quality worse, not better!
Wish you luck - youll get there in the end - its just a case of trial and error. x

Btw melatonin is good for regulating your sleep patterns, but it sounds to me you may need something stronger?
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Re: Sleep problems

Postby Purpledot » Sat May 11, 2013 9:57 pm

I have terrible sleep problems, and never seem to get any 'refreshing/restorative' sleep.

My GP explained that when you have Fibro, your brain pulls you out of Stage 4 of sleep, which is the stage that restores energy and regenerates cells etc. For some reason, as soon as you drop into that stage of sleep, your brain pulls you out of it. This explains the disturbed, non-refreshing sleep.

I have just tried taking Amitryptiline, but it made me feel too groggy (even more than usual!) the next day, even with 10mg, so I have stopped taking it. It didn't really do anything for my sleep either.

My GP also said that doctors had done research where people were deliberately deprived of sleep, and after so many days they started to experience many of the symptoms we experience (fatigue, imbalance/vertigo/pain/brain fog etc.), so, in effect, part of our trouble is that we are experiencing severe sleep deprivation. He said this is the first and most important thing to address and sort out with Fibro, but how this is achieved I have yet to find out!!!
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Re: Sleep problems

Postby lucybythsea » Sun May 12, 2013 11:44 am

Purpledot wrote:I have terrible sleep problems, and never seem to get any 'refreshing/restorative' sleep.

My GP explained that when you have Fibro, your brain pulls you out of Stage 4 of sleep, which is the stage that restores energy and regenerates cells etc. For some reason, as soon as you drop into that stage of sleep, your brain pulls you out of it. This explains the disturbed, non-refreshing sleep.

I have just tried taking Amitryptiline, but it made me feel too groggy (even more than usual!) the next day, even with 10mg, so I have stopped taking it. It didn't really do anything for my sleep either.

My GP also said that doctors had done research where people were deliberately deprived of sleep, and after so many days they started to experience many of the symptoms we experience (fatigue, imbalance/vertigo/pain/brain fog etc.), so, in effect, part of our trouble is that we are experiencing severe sleep deprivation. He said this is the first and most important thing to address and sort out with Fibro, but how this is achieved I have yet to find out!!!


Exactly, purpledot! I think the research should be focused on how to keep us in that stage 4 sleep. THere is a direct correlation between my quality of sleep and my symptoms. xx
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Re: Sleep problems

Postby kazak » Sun May 12, 2013 5:26 pm

hi all
like many of u i 2 get very little sleep, sleeping for maybe hr 2 hr and half at a time with plenty of awake time inbetween or no sleep atall. last nite i slept 40mins then awake till after 5 this morning, awake again on and off till giving up at 8ish. my best time for sleep is between 5 and 8am, however this is still with waking but not as often. i am on 20mg amytriptiline and use 7.5mg zopiclone maybe 2 times wk. i am lucky to the point that my son is 9 so at school and i can rest during the day and sometimes just ignore the mess :crazy:
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