NOT sleeping at night!

All your fibromyalgia experiences, questions and answers.

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NOT sleeping at night!

Postby Lisa21 » Mon Jun 22, 2015 8:20 pm


Does anybody find it difficult to go to sleep at night? For quite a few nights now, when I go to bed I cannot seem to fall asleep no matter how hard I am trying to. I jump at any sounds and cannot relax also feel my skin itching.

Can anybody shed any more light on this? I don't understand if this is a phase in my awful sleep patterns or a long term thing.

Am on a lot of medications for a long time, even though this has started recently it is starting to really get me down.

I am on gabapentin and duloxetine amongst many other things.

Any help would be great. :sleep:
Fibromyalgia, Costochondritis, Hypermobility, Asthma, Crohn's Disease,PCOS, Vitamin D & B12 Deficiency
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Re: NOT sleeping at night!

Postby KenRP » Mon Jun 22, 2015 9:08 pm

I've not had a decent night this year.
The longest I've slept in one go is about 4 hours, I usually manage 2- 3 hours before waking, but I can wake after 10 minutes. Most nights I manage a few hours sleep broken up by 10 - 15 looks at the clock before I give up and get up.
I often don't know if I'm awake or dreaming, sometimes looking at the clock then returning to the same dream, but remembering what time it was!
I think poor sleep is just something we have to cope with.
Sorry if this is a bit confused, but I just woke up after having a couple of hours on the settee. :mrgreen:
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Re: NOT sleeping at night!

Postby Honeysmum » Mon Jun 22, 2015 9:11 pm

Sleep! Since I started with FM this is the bain of my life. In short I am now up to 200m of Amitriptyline having started at 10. Its the only thing that knocks me out and get a good sleep. In saying that every now and again I'll have 1 night where I am still awake at 4.30am but on the whole since I upped my dose it's doing the job. However, it means I am not able to be anywhere early in the day and certainly would be cautious driving anywhere until I'd been up and felt fully awake. So yes, I feel your pain. Daytime and last does to go to sleep I am on Tramadol, Paracetamol and Ibu. Hope you get some help soon. :-?
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Re: NOT sleeping at night!

Postby Andyp » Mon Jun 22, 2015 10:03 pm

I have had problems with getting to sleep for a long time, way before I was diagnosed with fibro. Although, I think it has probably got worse since my diagnosis - I am on duloxetine, gabapentin and naproxen. Feel tired all the time and it gets me really down.
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Re: NOT sleeping at night!

Postby TheHud » Mon Jun 22, 2015 10:28 pm

I sort of accepted broken sleep many years ago, never really slept again after babies. But by golly the game was upped about 8 years ago and the last 2 years, wake up drenched and like I am being chased, in shock. Or just the pain or the hips or I have ended up on my back and stopped breathing (that is a scary one) with a body numb from the neck down. I gave up pillows about 2 years ago, took a while to get used to it but it helps the posture. I can now get a few hours when I can without fear of a shoulder/neck buzzy nasty agony for months as long as I stay on my right side. I have a small baby cot pillow for tucking under my jaw to stop my blasted lower jaw flying across my face from left to right, dragging cheek and tongue with it and chipping bits of teeth lol. Not funny really, horrid, this attempting to sleep thing. In all honesty it's not as bad now on pregab at least I can get a couple of hours. Of course to mere mortals this would be ridiculous, just a couple of hours.

Do you lie there watching your partner sleep, staring at them and trying to remember how it felt?

Oh well we are off to bed, hubby has a lurgy. See you all in an hour ;-)
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Re: NOT sleeping at night!

Postby lynlyn1212 » Mon Jun 22, 2015 10:31 pm

Valerian root. Changed my life. Herbal and no side effects reported by anyone. Recommended by my chiropractor. I love him!!!
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Re: NOT sleeping at night!

Postby N3moHoes » Tue Jun 23, 2015 4:05 am

The old jumping at anything symptom. I have all the symptoms, not just one out two I've managed to luck out. Jumping at noises, can't stand sunlight, itching all over, muscle spasms all over my body including chest and neck spasms, my whole body vibrates 24/7 it's like I've swallowed 20 mobile phones and they're all going of at same time on vibrate, on the occasion I'm able to make it up the stairs to bed I either can't sleep or I'll nod off for 30minutes then I'm awake again, pins and needles in both hands and feet, my skull goes numb, blurred vision, I can no longer urinate standing up, I talk to people when they are not in the room, sometimes if I shut my eyes I wake up and can't breathe, it's gotten that bad I've had to go and purchase a £300 wheelchair just to get about in the house. I'm sick and tired of this nasty horrible disease, sometimes I just want to shut my eyes and never wake up. I wish all the very best and hope you never get this bad...
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Re: NOT sleeping at night!

Postby Willow5252 » Tue Jun 23, 2015 5:48 am

Aaaahhh!!!. Sleep. I have had Fibro for 8 years. Most of it has been a constant battle for a few hours of sleep. If you go with the research that our condition is a neurological one, and the brain and spinal cord is affected, then you can understand that the 'autonomic nervous system' is constantly on. That fight or flight response never switches off. That's why our muscles work 24/7 causing pain, and severe fatigue. Regarding sleep. I have tried the routine Fibro meds without success.I have Melatonin. It works some times, other times my body gets used to it and I need to have a break. I use hot epsom salts/Lavender baths before bed. I put Lavender oil on my pillow. I often have to use Valium to relax and to go to sleep ( just one 5mg).On extremely bad nights where sleep just wont come I will take 'Stilnox' (1/2 tab). I am seeing a Homeopathist, and she has given me one that worked wonders for a couple of weeks, and has now stopped working. I got some Valerian Root from the health food store, and used it a couple of nights. The first night, I slept 10 hours, with only very brief breaks occasionally, I was very drowsy rather than that alert experience I normally have when I wake after 1-2 hours, so returning to sleep was easy. I stopped, because I had just started on the Homepathic treatment, and had to give that a fair go before I went to something else. Another thing I had a brief success with was 'Sour Cherry Juice'. I noticed an improvement in my sleep for a while, but then it stopped working. Has anyone else been through this, where they finally find something that works, then it stops working. Your body gets used to it. I see my Hemeopathist later this week. If I can streangthen the treatment she gave me I will, or I might have to turn to Valerian Root. Good luck to everyone on the search for a sleep aid that works for them
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Re: NOT sleeping at night!

Postby TheHud » Tue Jun 23, 2015 7:08 am

N3Mottoes - I hope you are getting all the help available. :(
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Re: NOT sleeping at night!

Postby robcathy » Tue Jun 23, 2015 8:22 am

Hi everybody lacking sleep. I suffered for years & desperate i read about a product called sleep aid, by kirkland. I having been taking now for a couple of years. I don't sleep all night, but it gives me a few hours, which keeps me going. I only take half & there are 96 in the pot so it lasts a long time. I got mine on amazon. Try it it might help, you too. Good luck. :crazy:
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Re: NOT sleeping at night!

Postby Redminx » Wed Jun 24, 2015 2:22 am

Ive not had a restful sleep in yrs since being diagnosed. Its a big part of this fibro and tellin people no matter how many hrs u get u dnt feel rested. When I wake I feel like ive not had a deep sleep i feel like im dreamin all nite and also my skin itches pins and needles etc my muscles will suddenly jump like ive had a small electric shock. Its tough but whats worse is pretending ur fine .
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Re: NOT sleeping at night!

Postby Zia2014 » Fri Jun 26, 2015 5:25 pm

I don't sleep well at all. I had chronic insomnia for a long time before fibro so I've tried everything. I just accept it now, even if I actually sleep I don't get 'restorative sleep' and some studies have shown with fibro you are unlikely to get that sleep as it allows your body to repair itself.

Btw how long have you been on the duloxetine? I found that made me 'wired' and could not sleep on it.
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Re: NOT sleeping at night!

Postby shmoif » Fri Aug 21, 2015 4:51 pm

Sleep? What's that? Haven't had a "normal" night's sleep in 2 years... and I'm on Zopiclone, opiates... Basically I've tried every sedative going lol.

Know how you feel with the itching sensation as well. It feels like I'm being constantly bitten by mozzies when I haven't been. I know the opiates I am on can have that affect, as well as sweating profusely thanks to this lovely condition.

Have you tried any of the following:

Hot bath before bed
Hot milk
Gentle breathing exercises (like at the end of a yoga lesson)
Soft background music
Sleep music (you can get apps for this)

None of these things have worked for me unfortunately but they may work for you and others in the same boat (for me, the only thing that gets me to sleep even a little bit is having BBC News 24 on low volume).

If you are worried that your medication being the cause, perhaps speak to a doctor :-)
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Re: NOT sleeping at night!

Postby UnderSiege » Fri Aug 21, 2015 6:30 pm

OMG! The itching thing!

Not all the time for me but once in a while is more than enough. I've been told it could be the codeine (which I've been on for 15 years) that does it.
Do you get the itches that you can't find? For example, there's an itch, it's on the lower leg, you scratch everywhere below the waist as well as where it seems to be coming from for ages with no joy. After a while you scratch your tummy or butt or even higher up and that does it... or it eventually goes away by itself... but only after you've considered some extreme solutions (boiling water at high pressure or a fork or wire brush...)
How's about the scratching absent mindedly but gently at an itch and it feeling like someone just burned you? (still gets me everytime)
Crazy isn't it?
I've heard of Fibro being described as a 'systemic dysfunction' (whatever that could mean, it's a bit of a broad term imo)
I call it the body betrayal (as in "thanks for not working right today legs and back... yesterday you were fine, what did I do wrong?")

As for the breathing/relaxation exercises... they've only ever really worked for me at the physios or pain management sessions... not really the place where I should be conking out for a few hours lol. I try them at home but even without the pain my mind keeps dredging up forgotten things to distract me... (Did I lock up? Is the gas still on? Oh, now I remember that thing I've been racking my brains about all week...)

Oh me oh my...
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Re: NOT sleeping at night!

Postby Purpledot » Tue Aug 25, 2015 1:08 pm

I was told that when you have Fibro, as soon as you drop into the restorative and refreshing stage of sleep (stage 4 or 5, can't remember! lol) the brain will pull you out of it.

This effectively means that we never get restorative and refreshing sleep. I was also told that many Fibro symptoms are the same as those observed in people who were severely sleep deprived.

This is why we are prescribed Ami etc, as this will, in some cases, override the brain and cause you to stay in that important stage of sleep.

It's a nightmare (excuse the pun!) isn't it? I haven't had any proper sleep for so many years. :-x
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