Does anyone have any helpful tips for... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Does anyone have any helpful tips for getting sleep?

GaryNI profile image
28 Replies

I`ve terrible trouble getting any sleep sometimes with the pain i could be awake for 3days and only fall asleep due to exhaustion. I have terrible broken sleep what little a get i seem to manage on at most 2hrs per night . but its in like 15-20 min bits i fully wake up to turn in bed at night and it takes me time to try get back over and every morning i get up i don`t feel refreshed at all. Does anyone else have this problem what do you do for it?Is there something that can be done?

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GaryNI profile image
GaryNI
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28 Replies

I had this problem for a long time. I couldn't get to sleep and then I finally did only to wake up about 2 or 3am every morning.

I took Tesco's on make sleeping tablets, I don't know if it was 'all in my head' that I'd sleep but they worked. then I told the pharmacist that I was taking all the other drugs too and she wouldn't let me have them anymore.

Now I take Gabapentin for my RLS and fibro and sleep much better. I do wake up with the pain if I try to turn over but can usually get back to sleep.

Not much help, sorry.

GaryNI profile image
GaryNI in reply to

even when my doctor gives me sleeping tabs he`ll only give me a feww from time to time hes afraid i could get hooked. but they seem to help me get over but thats it once i awake i struggle to get back over .and on top of everything i tend to be a light sleeper and wake up to most noises which also does`nt help.thanks for the reply sue

marymcd profile image
marymcd

have same problem too, 3hrs is usually a real good sleep for me :( have to depend on half hour naps to help with exhaustion

have tried everything including strong sleeping tablets from docter but nothing working

GaryNI profile image
GaryNI in reply to marymcd

I can feel where your coming from there .i was on a whole coctail of meds and had doctor cut some back was taking pregablin,+8 co-codamol +,,2tramadol ,also had 3-4 other differnet tabs was taking 20-24 tabs a day at 1 stage. was like a walking pill bottle.I find my concentration is noit as good as it used to be.

marymcd profile image
marymcd

have been on all the same meds, now my doctor has given up as its frustrating him as much as me, am being sent back to rhumatoligist for his help but have to wait until april for appointment :( so at least another 2 months of not sleeping properly

GaryNI profile image
GaryNI in reply to marymcd

i`ve had sleeping probs for a long time. thats why i asked thought someone might be lucky to know something that works for us all.I smpathsize with you i`ve been from pillar to post had all sorts of tests done lots of bloods seen heart consulant as heart trouble runs in family have also been diagnosed with cfs . have been having bad stomach pains for 6months now they recently di ultrasound scan on me and found that i have galstones but also there something wrong in stomach on top of that. I`m seeing a gastro surgeon next month at the end of month to see if he going to put camera down my throat to see better wether the other problem is an ulser or termous growth also my liver is not functioning fully and doctor been doing all sorts of tests to try and workout why. and on top of that have had high blood pressure only found 6months ago and on wednesday i have to go to hospitla to have heart monitor put on for 24hrs. we think we`ve manged to get in downsorted out some stuff that was causing me stress but it still not great.but at least it isn`t 120over 143 like it was when they found it. its strange to think that 3.5 years ago my blood pressure was 65over 125 .

marymcd profile image
marymcd in reply to GaryNI

oh strange, i had my gallbladder removed 18 months ago because of pain, however i still have days in agony with stomach, hope you get yours all sorted

GaryNI profile image
GaryNI in reply to marymcd

don`t give up theres bound to be some meds out there that can help nothing completely takes pain away but things like healthy diet can help and regular exercise even only walking.

circuitrunner profile image
circuitrunner in reply to marymcd

Not the best term to use but in my case - mind over matter - When the pains are not enabling me to sleep I give up - whats the use lying their and getting mentally worse also. Therefore I try and occupy myself and think of something to do - yep the pains bad but it helps to distract. After all end of the day you can only go so long without sleep then your body shuts down and hey ho you get sleep without choice of time lol

sloth profile image
sloth

I have this problem, I'm constantly tired but when it comes to sleeping when I need to sleep its a no no. If I had a day off though I'd sleep threw the whole of it.

I get about 3 hours a night. My mind is either over thinking things and getting annoyed because if things I wanted to say but didn't come out, playing conversations in my head I want to say to people the next day, or I just cant get comfy and have to keep moving. That and needing to get up and pee about 7 times a night, stupid IBS.

No sleeping pill makes me sleep. I also have a fear of being 'made to sleep' which doesnt help.I think I wont wake up lol

sloth profile image
sloth

I have done/tired one thing that has made me sleep. But I would not recommend it.

Ebony profile image
Ebony

It is known that insomnia and un-refreshed sleep is very common with people who have FMS. I was told sleeping tablets don't work with FMS so I don't take anything to help me sleep. I go through phases of not sleeping and also of being able to sleep. I make the most of the nights I can sleep and just cope with the nights I can't sleep.

GaryNI profile image
GaryNI in reply to Ebony

my problem there is what little sleep i do get isn`t much like i don`t sleep for 1hr complete at anytime i get alot of like 10min power nap sort of thing and have to try and manage on that.which eventually catches up on you with serve exhaustion.

LindseyMid profile image
LindseyMid in reply to Ebony

Why wouldn't sleeping tablets work with Fibro? The sedative hypnotic drugs (classic sleeping pills like Zopiclone, Zolpidem, etc) do still work on someone with Fibro. they shouldn't ever be taken long term though, so they are not a good general treatment option with Fibro. But they can be useful short-term for flares.

Other medications are used long-term to help sleep in Fibro.

Almost anything that treats the actual Fibro could help improve sleep.

Herbal sedatives (valerian, etc) can also work on people with Fibro.

And Clonazepam & Lorazepam are often used by Fibro docs - they use them at low doses at bedtime only and this reduces the risks of addiction a lot. These medications work by increasing GABA levels in the brain, which reduces the autonomic nervous system over-stimulation which is a key part of Fibro. They also have a muscle relaxant effect.

GaryNI profile image
GaryNI

i have nights like that also you get into bed and your head is swiming with thoughts even when i`m asleep i still moving my legs seems to still move even when i`m asleep so i`m always tired.

Sarah-Jane profile image
Sarah-Jane

Putting together what everyone has said here and elsewhere, I am wondering whether some of you have the wrong combination of meds? I never found Tramadol helped my pain or sleep, but I am on Pregabalin, Tegretol and Lyrica and do usually get a reasonable amount of sleep. When its restless legs that cause me a problem I go back to the doctor. The pain seems to be dealt with by using co-dydramol but I have been told that this does not work for FM!? I know I have arthritus as well, but this cocktail is helping most of the time. I do have to go to bed earlier though. I used to watch the 10 o'clock news then roll over, but I cannot roll over because it causes too much pain [I sleep on my back partially raised to prevent reflux and pain in my left ribcage] as my hips have arthritus. I have epilepsy too hence the tegretol, so I take them with the last dose of Lyrica and Pregabalin and am dozy within a couple of hours tops. That means I am in bed at 9pm - if any later I do not wake with any energy. That only happens if I get 12 hours.

Now I know I sound selfish when you are trying to sleep, but I am wondering whether it is all the time? Are there times when you could sleep and sleep on in the morning if things were quiet? I have heard of people sound proofing their rooms, getting eggshell style mattress toppers and blackouts so they can sleep. How about you?

Sometimes my husband is the worst one at waking me. He doesnt mean to, but if he moves I wake, if he snores I wake, if he goes to the toilet or work I wake. But not all the time. This tends to happen for me when I have gone to bed late or read late. This seems to have a pattern to it as does my PMT.

I find my kindle soothing to read, calming me and giving me a mindset thats right for sleeping.

I have also got into the habbit of writing things down that I need to do and crossing them off as I do them. This eases my mind as I know I don't have to think of them. If I do have trouble getting to sleep I give up, get up and go into another room, not downstairs as it hurts going down or up again. I read for about half an hour, have some water and try again having gone to the toilet. I have heard that we sleep in two hour cycles so if you cannot sleep, do as I just said and try again about 2 hours later. It does seem to work, and if you are bothered about something or have a good idea, write it down during this time. I write my best letters in the middle of the night, but I would advise reading them through before posting them.

I do hope some of my ideas and comments have been more helpful than hurtful and wish you a better sleeping pattern in future, all of you.

Soft hugs

Sarah-Jane profile image
Sarah-Jane

Oops, meant Lyrica [pregabalin] 200mg, Tegretol x3 and Amitriptyline 25mg. Its the Ami that gets me to sleep I think as it stops my restless legs [hyper sensitive reaction to pressure of bedding etc]

GaryNI profile image
GaryNI in reply to Sarah-Jane

i`ve been on different things i was on lyrica and amitriptyline had fluxotine which was the best thing for energy boosting once it built up in your system.there is days where i go to bed after work just to rest because i`m sore and wore out.i find things like tamazapan sleeping tabs will help relax and get over to sleep but any noise or of my partner moves i wake. i don`t make it into a heavy sleep unless i`ve maybe not slept for a few days then i`ll get maybe a 20min power nap and will seem rested after that for a short while. I can`t sleep on my back since i was small. i always sleep on side or stomach which is probably 1 reason why i turn so often as the pain is very bad alot of the time the tramadol is strong but dulls pain off some i only take 2 a day 1 in morning before i go to work and 1 at nite before bed.during the day i take my 8 co-codamol over a 24 hr period . because of not sleeping much the days sometimes seem really long. at times i`ll turn tv back and watch and hope to dose off to sleep.sometimes i do get up go back downstairs and sit watch tv have cocoa or go on pc .to past time people comment to me alot that i always look knackered or wore out.

LindseyMid profile image
LindseyMid in reply to GaryNI

Have you ever had a sleep study done? Non-restorative sleep is typical of Fibro, but you do seem to have an extreme case (it could be Fibro, but this level of sleep issues is more severe than is usual)

GaryNI profile image
GaryNI in reply to LindseyMid

the only sleep study i had done for sleep apmia and i did`nt sleep at all the nite they had the monitor on me. think i`m in for a bad night tonight i`m totally shattered in alot of pain this week and i have a heart monitor on for 24hrs to monitor my blood pressure as its been around 118over 135 for a while.so they are going to monitor me for a day.

GaryNI profile image
GaryNI in reply to LindseyMid

do you think i could ask my doctor to send me to a sleep clinic for the over night or what is it a few nights testing?

GaryNI profile image
GaryNI

yes i suffer from the restless legs. and as you say i done the things where i sitting downstairs my eyes going together i go up to bed and the minute my head hits the pillow i`m wide awake and can`t sleep its so frustrating.

lynr profile image
lynr

This is exactly like me ChristineEls I have a feeling of breathness with out being breathless. ( if that makes sense) Also palpitations in the middle of my chest.

fibrojude profile image
fibrojude

I dont take meds my body cant handle any more than a nurofen or similar! i lay down and fell a rocking sensation weird ! then i fight to sleep even though ive just nodded off trying to watch tv miss everything! i feel breathless sometimes get like a choking feeling have to have water at hand . then theres the twenty hot flares in the night if i turn i get one or get up for a wee or im freezing and feet like ice :-( see every hour wake up lovely black eyes . then when the suns out my body wants to sleep .

KEH85 profile image
KEH85

Amitriptyline is he best thing for me and then Melatonin on the days I know I am driving or getting up early and dont want to feel hungover. I take amitriptyline about 8 pm and the Melatonin half an hour before bed. If your pain is under control then these should work. I find no napping in the day and no caffeine a big help to stay asleep all night. Maybe a low does of anti-depressant taken late a night might help you. This also worked for me for a while. Good luck

Plumcake profile image
Plumcake

I always put some relaxation music or sleep cd on every night after I turn out the light. there are many you can get which guide you through ways of relaxing.

If I'm away I take my portable CD player with me and a few of my favourite ones, works a great with my .0. 75mg of clonazepam I take.

Keeping asleep is my main problem. Especially since i have a new foster cat who wakes me at 4 am prancing around on my chest. ha ha

poppybracken profile image
poppybracken

I have had sleeping problems for abour 25 years, now i take Limovan or Zimovan I get Preglain from my GP but th eslleping tablet I get from a friend in SPain as my GP will not give me them on regular basis.

If I take noting I go to bed and if I do fall asleep I will have about one hour then I am wide awake . If my pain is bad each time I turn over I wake up !

GaryNI profile image
GaryNI in reply to poppybracken

Yeah the doctors don`t like to give out many sleeping tabs as they say you get hooked on them to try get a nights sleep .but you need them even if its once a week to try and get 1 half decnt nights sleeping. I have terrible broken sleep and don`t go into deep at all it seems as any noise at all and i`m awake .When i turn i fully wake up and can`t get over again easily I go to bed about 8-9pm and am up again between 4-30-6-00 each day into that time i`m lucky if i get more than 1-2 hrs per night some weeks i hardly sleep at all and become so easily annoyed and crabby because i`m so sore and exhausted.I`ve tryed LIDocaine patches which are 12hr patches and numb that area you put them on which has eased some of the pain i tend to put it on the sorest place to try make it more bareable but have found no pain relief that completely takes all the pain away.

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