sleep/no sleep.sleep

[nadine111]

i've had problems with sleeping off and on for year but never like this. i can't get to sleep until about 3:00 a.m. i make myself get up around 9-10:00 a.m. have no energy , nothing. i'm still in my pj's and just can't get myself out of bed. my pain has been worse and anxious about a couple doctor appt.'s which might be part of the problem. any suggestions? i don't want to land up being awake at night and sleep through the day like a couple friends.

[Betty67]

Try to get some daylight, or if unable to go out buy some daylight bulbs.

No electrics in bedroom other than lights. Lavender at night and Rosemary in the morning.

Be very boring just before you go to bed. X

Are you taking medicines, should you take them earlier in the day.

Hope you find something to help.

[Shadows-walker]

Hi I am getting off about 6 am ish now . But wake about 9 ish and it takes me hours to get out of bet if I go to bed early I lie there awake was doing colouring at 4 am this morning , if any one can suggest any meds that might help , let me know as my GP has asked me to ask on here ,so he can look into for me 😊 .i like my GP he's great .

[Piggysqueak in reply to Shadows-walker]

Hello Shadow walker

Can I borrow your GP

Mine good but I dread her retiring

I think if I'm not going crazy are you Welsh

North or south ? Xxxxx

Love squeak xxx

[Shadows-walker in reply to Piggysqueak]

I am right in the middle 😊 , I have been being treated by two , my main one left 4 months ago , and to be honest I burst into tears when she told me, but when she was off , I would see the head of the practise , but when she left he put me on his books . Said I was to complicated and he new me and I didn't need the stress , he's brill .

Chris , x

[Piggysqueak in reply to Shadows-walker]

Hi Chris

I only ask about Wales as my Nain lived in Bodfari up north

Mum is very proud of her Welsh roots

And I'm half Welsh lol

I'm glad you got to be looked after by GP

It's such a worry I think I will cry when mine goes

My GP has promised to let me know as soon as she knows lol

Nice talking to you

Love squeak🐷🐭xx

[rosewine]

Just a thought because of the Pain and fatigue of fibro many people unfortunately start to understandably get depressed. The awake at night, extreme exhaustion and not wanting to get up and sleeping in the day can be a sign of this. I recognise some of the symptoms as that is how my Oh started. It is worth mentioning your symptoms to you Gp

Often low dose antidepressants are prescribed for fibro especially if people are suffering low back pain as well and in many cases they can also help with sleep.

Do try all Betty's marvellous tips but if these fail do mention it to your GP. This is from a life time insomniac by the way who hates not sleeping like you but realised some time back that when all the other things failed to help worrying about it is no good so I am much more accepting of it and think I may not be sleeping but at least my body is resting and I try to fight the urge if getting wound up about it.

I do hope you find something that helps you cope.x

[nadine111 in reply to rosewine]

thanks for the advise-after 10 years of battling fibro have found i have many other "ailments" including many bulging discs in neck and lower back, depression, migraines, etc.etc.etc. the pain level is bad these days which obviously doesn't help.

[rosewine in reply to nadine111]

Hi Nadine

Absolutely agree as so many of the other things most of us suffer from add to the misery and especially pain at night. We might eventually be able to get into a comfy position and drop off to sleep and then we turn and wonder why we are wide awake and I am sure that it is the pain that has woken us ip. With your bulging discs I am sure it must be very difficult for you to get comfy like it is with my osteo. It is either the muscular ache of the fibro or the osteo pain or sometimes both and you wonder why you have gone to bed in the first place. My friend often ends up getting out of bed and trying to leep on her recliner as she can get in a better position.

When we move I am going to have one of those adjustable beds. I got the idea from remembering back when I had a bad fall on the first day of a holiday. It was one of these two centre ones and even though the first place had an expensive bed it was flat and I ended up sitting up most nights. In the second place they had a wonderful adjustable double bed and for the first time in days I could actually get comfy and get a bit of sleep so OH said when we move lets get you one of those beds. Hope it helps me. We of course get in this vicious circle of pain dont we little sleep more pain, more pain little sleep.x

[nadine111 in reply to rosewine]

i'd so love to have one of those beds. our problem is that we have queen size mattress and have four poster bed so to replace both would be really costly. if knew it was worth it.....

[Piggysqueak]

Hi Nadine

I have tryed everything but my routine

It Is lights off by midnight

Tablets at 9 pm,milky drink

Spray cotwold lavender on pillow when desperate on me quilt lol

Read till I fall asleep and drop kindle

But set alarms on my phone for 845am,9am,915am,925am,10am,1030am and all different sounds on loud but sometimes sleep through them all other times I might hear one or two .pain usually wakes me

I do sleep in the day but I can't help it but try and limit it as much as I can

As for medication I have tried amytriptyline increased to 50 mg , zolpidem as emergency but soon stopped working as did zopiclone .

Best thing I did was swap duloxetine to am instead of night , made difference

All have pay off I have diazepam for muscle spasm but build up tolerance so quick

Mostly it's just one of those nights

Nice to have met u

Take care

Squeak xx🐷🐭

[nadine111 in reply to Piggysqueak]

piggysqueak-thanks much for the advise. i take zolpiderm plus benedryl for allergies at about 9-10 p.m. most of the time it worked until recently. love you reading your kindle until you fall asleep. when i just can't sleep at all i will leave the master bedroom going down into the guest room where i read until yes i too fall asleep while reading. that room as the weather gets colder is freezing so have to put heater on, add a towel or sheet on top of sheet since it's cold too but somehow i do manage to get to sleep downstairs. my husband hates when i leave our bedroom plus i then leave my c-pap. of course i don't leave until about 2-3:00 a.m. wonder if would make a difference if went to sleep downstairs at regular bedtime.....mmmmm. not a great idea, huh?

[Piggysqueak in reply to nadine111]

You have reminded me nadine of the days before kindle when I lived with my hubbie and I had a book light and use to hide under the covers to read lol.

We were lucky to have a spare room so I would start off in our bed then move into spare room .

I use to feel so guilty about being restless and disturbing his sleep as he worked full time and at the time I was off sick .then if I did sleep I would scream out in pain and wake us both up .

I have now for the last four years been separated from my hubbie however we are still best friends ,it's not all bad .

I kept our old bed and I just bought a featherbed to go on the matteress ,new pillows that vary in support a v pillow and some Cozee fleece sheets oh and a warm duvet made of microfibres it feels like down so soft . I sleep in the middle of my bed with about 6 pillows in an armchair style and I can( pain level depending) get up potter about do as I like . Without a doubt I would give it all up to have my hubbie back but I don't miss the guilt .no matter how much he and everyone said you can't help not sleeping and waking him up it made no difference .

Please don't think I'm suggesting you leave your hubbie ,or putting any ideas in your mind that he's going anywhere .my husband and I had been married for 3 months before I got really ill and it got much worse ,I'm flat bound really scared of the pain, in so much pain despite medication etc so I just survive not live

THAT HAS GOT TO CHANGE !!! I KNOW

my husband did well to manage 12 years of it all ,if you knew him you would understand . He was the right one for me but he lacks some tolerance and compromise to level I needed just makes him unhappy . But despite this we are best friends.enough about me you poor girl I don't half bang on lol .

Can I ask C-Pap is that not essential love

Check out QVC Cozee sheets they are so snugly and warm might help you not be so cold

Does your hubbie mind the light from the kindle ?

Lovely talking to you

I know it late

I hope this is nt one of the nights you sleep well and I wake you

But then again what are the chances .....

Love squeak 🐷🐭xx

[nadine111 in reply to Piggysqueak]

oh squeak- you are so sweet. i have a very dear friend who is housebound too. she and i talk about once every week or so. oddly she talks on the phone to many people whereas i have gotten to where i rarely talk on the phone. i am so lucky to have an amazing husband. been married for 46 years through many ups and downs. i don't know what i'd do without him. although i can hear your pain both physical and emotional you are one very strong person. hang in there and know there are people who care. i am grateful to you for taking the time to e-mail your suggestions. will check them out promptly. re:c-pap-i should wear the c-pap nightly but manage ok the times i sleep without it. guess it's because i've tried to sleep with it on for hours and put it back on when go back upstairs early in the a.m. that must get enough time using it? sometimes the noise from the c-pap bothers me or the noise from my husbands c-pap will wake me up. feel that he needs his on more than i need mine on. do you have a c-pap? i keep forgetting to ask members if they have one how they manage the noise...anyone?

again, thanks squeak!

[Piggysqueak in reply to nadine111]

Oh Nadine

How lovely 46 years of marriage

He's not going anywhere lol

Well you've made me chuckle this morning

I was so worried you would think similar would happen to you as to me lol no chance .

I had a neighbour who was 84 and I'm 44 ( you have been married longer than I have been alive lol ) and before I moved I would go for a coffee

We actually shared a stray cat to , we use to ring each other and say " he's on his way "

Then we found out that Bobby aka ginger ninja use to have breakfast every day at 6 am at Enid's

I use to image him having bacon and eggs lol

After I moved we still rang each other

Kath despite being 84 was very young she use to get the bus to town and meet her 90 year old friend who she use to go on cruise all over the world with .

Sadly my Kath has passed away of gallbladder cancer

I miss her so but she was so very brave

I still can't take her number off my phone .

Your lovely nadine ringing your friend

I must say I don't know what I would do with out my daily dose of my mum on the phone bless her

I really am so lucky to have the best mum ( I'm sure everyone thinks same )

I'm very lucky not to have chest problems so no Cpap

I did always think you had to keep them on all the time you were asleep . I have seen then and they are noisy but essential difficult one

Really lovely to meet you

Take care both of you

Love squeak 🐷🐭xx

[Angelseven in reply to Piggysqueak]

Hi Squeak

I am reading this thread with interest having tried almost everything like most of us.

Your story is mostly like mine.

Switched Duloxetine to am as it was making me feel really awake at night. I now only take Zolpidem and Diazepam once a week (not at the same time) which seems to do the trick for one night at least as with continued use stopped working.

I have tried Circadin(serotonin) but sadly that didn't work. Might be worthwhile for you to give that a go?

Otherwise back to almost the same routine as you ....

Listen to BBC London radio for a bit

Lots of lavender

Take pain killers

Read Kindle until fall asleep

Wake up in pain (could be half an hour later, could be more)

Read more

Constantly adjust position

Take pain killers four hours after the last dose

Fall asleep and drop Kindle again at 7 am or later .....

You know how it goes!

At least I know that I am in very good company!

All the best to you.

Jane

💤💤💤 I wish!!

[Piggysqueak in reply to Angelseven]

Bless you Jane

Reading your routine at night

It's definately mine as well

Even more similar than I actually wrote

Hope your kindle is insured

My kindle wakes me as it hits the floor sometimes lol

And you have to start all over again ..........

The duloxetine it was another patient when I was in hospital that told me and it was great taking it in the am at first . The diazepam I take 4 mg with pain relief as helps pain but for sleep I could take 10 mg now and it would nt work as I have such a tolerance . I have not got a choice despite it helping( I'm allowed 12 mg max in 24 hours ) with pain the GP surgery want me off the diazepam I understand why but really does help pain . I think your doing well to wean it down to one night for each . I never heard of circadin so thanks . My mum is on loprazolone and has been for years GP don't like it but she good at changing the subject . The old fashioned addictive sleeping tablets do I think have a place for us yes there not good but they work .if I asked my GP for what mum has I think I would be banished but as I have to take morphine and will for rest of my life I would just love to sleep . I battle regarding the diazepam everytime I speak to a GP but it's not them in pain and not sleeping !

Sorry for the rant

Can I ask what dose of diazepam do you take ?

Do your GP surgery help ?

Nice to meet you Jane

Love squeak 🐷🐭xxx

[Angelseven in reply to Piggysqueak]

Nice to meet you too Squeak.

I must admit I did have a laugh (you have to don't you!!!) at the vision of us nodding off only to be woken up by a falling Kindle. As I sleep in the middle of my bed (live on my own) I usually have one of my cats sleeping on my chest who leaps into the air when the Kindle falls on him.

I take 5 mg of Diazepam. I just find that taking on a regular basis builds a tolerance and they cease to work for me so taking the occasional Diazepam or sleeping tablet seems to be a better option - at least I then get one or two half decent nights sleep. The rest of the time is just rubbish really as you know - sometimes I read, play solitaire, listen to the radio or practise drawing my machine quilting patterns. Then as I said fall asleep at 7 am and the cycle goes on.

I try not to take pain killers in the day unless I am feeling really bad or have a migraine and do find that the Duloxetine helps with pain management to some degree.

If you Google Circadin you will get more information - it is a four month course (I think) which is meant to reprogramme your sleep pattern. I know that it does work for some people. Anything is worth a try.

My GP is brilliant and is willing for me to try anything - she is very sympathetic. I have tried most of the meds mentioned on this site but most don't suit me or they clash with other medication I am taking. So basically down to Co-codamol for the pain as cannot take any other painkillers.

Phew - now off to look after the twin grandchildren for a while while my daughter goes to work. They are coming up to three and quite a handful at times so wish me luck!!

All the best to you Squeak - nice to chat to you.

Jane

[TheAuthor]

I sincerely hope that you are feeling as well as you possibly can be today? I am an insomniac so I cannot really give good advice on sleep issues. However, I see that you have been given some wonderful replies so I will just genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

[sandstone]

Hi to you all ...i suffer from sleep...can fall asleep without warning in evening...sleep then wake at 8 not sleep again till 3ish then sleep till 11am ..sleep in afternoon regular too...

or i can be having a good day awake at 10am ish last till 9pm then sleep till 6ish then be wide awake but by 9ish doze back off...

i sadly should wear a cpap machine but very often find i have been sleeping without it..have tried getting someone to put it on while i am asleep but i wake up..have tried thinking im ready to sleep and having it on then not sleeping

cant win unfortunately there

with regard sleep luckily i dont work .(although would happily do so if my health would allow) so i just have given in to my body now and sleep when it wants me too (may not be best situation but does seem to help) my family support me and have 24care on hand .

i dont know how i would cope with a job or young children...i have a 13yr old who is amazing he is home schooling and when i am alert we look at what he needs to be studying then if i doze off he carries on with his tasks..if he gets stuck swaps subjects till i wake up and can explain to him.

my mother in law lives 3 doors away and is brilliant too she does all housework/cooking until partner or daughter are at home...

i realise i am blessed with good family....although i want to do it myself my health wont allow..

wrote while in bed lol...take care all ..

[nadine111]

wow Sandstone-that sounds awful. i could swear i have read there are a couple medications available that help your problem. of course fibro fog is ruling my life today but if you haven't heard about these meds and would like the names, let me know. i can get them to you. it's a shame we can't all share the problems that we have that are opposite-no sleep/always sleep and land up with "normal" sleep.