Lets talk about sleep again

All your fibromyalgia experiences, questions and answers.

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Re: Lets talk about sleep again

Postby DebiP10 » Wed Mar 19, 2014 1:13 pm

For the past 5 months ive not had a decent nights sleep either. I am lucky if i get 4 hours then other nights i am waking every 2 hours, usually to turn over due to pain and numbness on that side and just cant get comfortable in any position. All through the next day my head is banging. I dont know if this is due to lack of rest or just the fibro but i feel like the walking dead :(
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Re: Lets talk about sleep again

Postby painprincess1 » Wed Mar 19, 2014 6:09 pm

this is a hard one as different things work for different ppl.i dont no if u work if so maybe your over tired. if u dont maybe your body is just not tired enough.if u wasnt on meds id say have a drink but then u would end up with a drink prob hehe.erm i no for myself its getting my brain to turn off. if i cant i dont sleep end of. have u got things on your mind that need sorting out.now your going to laugh at this bit are u married or living with someone ,some times a bit of rumpy really relaxes the body and yes im aware how much we all hurt.the dr told me that one believe it or not.and he wasnt wrong lol mostly.
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Re: Lets talk about sleep again

Postby mandiw » Wed Mar 19, 2014 6:45 pm

I listen to my I-pod. I have different genres of music so I just listen to what I fancy at the time and really concentrate on the music and the words so it stops my mind whirring on about too much stuff. Helps me to relax.
You could have talking books, pod casts or many other things to listen to as well. Might help you.
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Re: Lets talk about sleep again

Postby Wackers34 » Thu Mar 20, 2014 12:23 pm

thanks everyone

Fluppy - i have tried the bedtime routine to the extreme...i could do with maybe tring some more relaxation techniques...il download some - thanks for reminder!

I need to get back into walking again to help exhaust myself - even though I am already exhausted if that makes sense

Fluppy - what meds are you on again - did you say the nortys helped you sleep? Im going to have to go back on amis - they are the only thing that gives me a chance of sleeping, nortys make me too wired!

I will check out the valerian drops - not tried them - thing is when you have been on some hardcore sleep meds like zopiclone, temazepams etc valerian might be a bit mild?

Thanks all :)
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Re: Lets talk about sleep again

Postby FluppyPuffy » Thu Mar 20, 2014 1:19 pm

When I was on noris they did help me far more, and for considerably longer than what the amis did. I only came off them because I started experiencing the same side~effects I had had when on amis, which at the time I just couldn't manage. It was mainly the dry mouth problem, no matter how much I drank. During the night I would wake up repeatedly with my tongue glued to the top of my mouth which was agonising to peel away. By this time I was up to 90~100mg per night.

I would try giving them a little longer if you can, as my GP always says to me whenever I need a new med, you do know it will probably make you feel worse as you need to get used to it, before you will start to feel any improvements.

Doing a little more exercise/being a bit more active during the day is a good idea. It doesn't have to be just walking, doing a little more around the house can have the same effect. I've had to rewrite my goal for Pain Management as I had hit an impasse with trying to increase how far and how often I was being walked by the doglet as any increases had started to absolutely floor me for longer and longer periods.

I went all the way back to the beginning, reassessed my baseline (which thankfully hadn't changed) and had a look at where I could try and increase what I was doing. Stuff in and around the house was the obvious thing as it's far from how I want/like/need it to be, so that is my revises goal, increase my activity in and around the house ~ as well as doing a bit more, it will hopefully start to look a little like how I want it be.

I started off with an additional 5 minutes on top of what I already do, and have increased it by a minute each week. There have been a couple of times where I have needed to give things an extra week before increasing due to how I was at the time, and I've had a week where I had to go back a couple of minutes then start to build back up again. I'm currently up to an extra 10 minutes per day, as well as what I would normally do, and have gone back to my original distances for walkies.

Just like all the other crap that FM lobs at us, it's a case of trying different things for various amounts of time, and in as many possible combinations and orders to try and find what helps you.
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Re: Lets talk about sleep again

Postby Wackers34 » Thu Mar 20, 2014 3:05 pm

Fluppy - thats the exact reason I got taken off amis in first place! and its no diff on Noris...my dry mouth and has caused throat problems (i am not sure if it is def the meds though) or just fibro / CFS in general :(

I will go back to doc i think and discuss it with her - i dont want to continue if its causing me such scary side effects

What do you take for sleep or do you not need to? I have a lot to do round the house, have two little kids to pick up after also, but the walking i need to up, last week I tried walking to the school twice, it felt great, but then i have suffered days after..perhaps i should just do it once a week for now

This is all such a minefield to work out !!! :crazy:
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Re: Lets talk about sleep again

Postby Wackers34 » Thu Mar 20, 2014 3:09 pm

pain princess - ha ha - just read your bit of the post :oops:

Ahem - that has fallen by the waist side for a while, as i just dont have energy! Its not so much about the pain for me

Drink - i would love to - but it just burns my throat...i do have some throat thing going on and this is perhaps whats on my mind...I need to get this sorted as its a real problem...i think a referral to ENT might be in order as i just have glands (hard lumps also) that just never go down - im anxious about this
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Re: Lets talk about sleep again

Postby FluppyPuffy » Thu Mar 20, 2014 4:55 pm

Dosulepin is what I'm on at the moment to help with the sleep problems. As my GP knows me well now, I have a degree of flexibility in the amount I take, upping it when needed, then dropping it back down again once things are approaching a slightly more even keel.

The dry mouth problem seems to be a problem/side effect with a good number of meds, and of course things affect us all so very differently, so they could be behind the problems. Mentioning it would be a sensible thing to do as there may be something that can ease it for you. You can get artificial saliva which you squirt into your mouth, altho it didn't really make a difference to me.

With the school run and how it left you feeling, maybe you did too much too quickly, it's easily done, no matter how long you've had FM :facepalm: :facepalm: :facepalm:

I had a bit of a :lol: :lol: :lol: at what PP said too, and it's not high up on my list either, altho it does have the benefits she says.........I think.....well there are some very hazy memories about it :lol: :lol: :lol:
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Re: Lets talk about sleep again

Postby Itsnotinmyhead » Fri Mar 21, 2014 11:57 am

I have had sleeping problems for years. No matter what time I go to sleep I am always awake within two hours and then have a disturbed night until I get up. Sometimes pain wakes me up, sometimes cramp or numbness, other times it's just my brain refuses to rest, or all of it
:( :(
I take amitryptiline but still have problems and have the dry mouth side effects. My GP wants me to increase it to 70mg (from 40mg) but I'm going to speak to the rheumatologist next week, because I don't think it helps.
It makes no difference whether I have had a day when I was active or unable to do much.

I always try and unwind with a warm bath, but I'm another one with a mind that never shuts off.
I tried relaxation techniques, but they don't help me with sleep issues.

So far I have found storybooks the best way to get me back to sleep. I have a few on my IPod.

I've been listening to the same book for months because I have to keep going back to the last part I remember!
It's a shame because I want to know what happens :lol:

I listen to classical music as well, but that doesn't work as well as the storybooks. Watching a video when I am so tired, gives me migraine.

Sending gentle hugs and wishing I could send you a bundle of goodnight sleeps.
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
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