I can't get no sleep Who is with me??... - Fibromyalgia Acti...

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I can't get no sleep Who is with me???? 😴😴

Twinkle0411 profile image
•31 Replies

Hi there All,

Well am I the only one awake?? Or are there more night owls out there?? My goodness the weekend I got in the garden and in the sunshine. This was lovely but owe boy have I paid for it since.

My sleep is all over the place and to top it off yet again I have a really bad throat /ear sore mouth and that all over car crash pain, plus teary and run down plus frustrated.

The benifits agency also mixed up my esa payments for the 2nd time in less than 6 months so had to sort that too.

I just thought I'd post as to reassure anyone else out there you truly are not alone. There is another night owl out here who's eyesvwant to shut but body and brain can't.

Lots of gentle hugs to you all xxx🦋😴💋

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Twinkle0411 profile image
Twinkle0411
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31 Replies
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BonnieSue profile image
BonnieSue

I'm up with you! It's only 11:14 pm here. Sorry about that esa payment! Glad you sorted it out! My buzzer for the washer is calling me, I'd better go. Let's see, it should be about 4:14 am where you are...I think you've missed a good bit of rest. I hope you get some sleep soon. I'm excited about getting my new CPAP machine today. I might get a great night's sleep tonight for the 1st time in months!! The old one was letting me not receive enough oxygen when I slept, way too little was getting to my brain while I slept and it was really showing in my waking hours. I think I'm going to see an improvement fast. Darn! That buzzer is still calling to me, must go!

Twinkle0411 profile image
Twinkle0411• in reply toBonnieSue

Hi there BonnieSue,

Many thanks for your reply. I finally got to sleep I'm guessing around 6,45am as it was 6.30 last time I looked. I truly hope you get some sleep tonight and with your new machine it must make all the difference im sure😊I'm wishing you lots of lovely sleep for tonight??? I have to say I'm hurting and like a zombie this morning. But hopefully I will catch up on some sleep at some point. I hope you truly get a lovely nights sleep.

Thanks for the reply gentle hugs kaz Twinkle0411🦋Xx

BonnieSue profile image
BonnieSue• in reply toTwinkle0411

How are you today? I hope you got some quality rest time! 6:45 am is a tough time to go to sleep and get enough of it.

My new CPAP is right out of Star Trek...it has a modem built in. It reports directly to the doctor from my bedside and to my laptop so I can monitor my night time sleep or lack thereof. I slept well but I'll check later on the quality and oxygen level. The machine doesn't need me to turn it on and off...it just knows when to do those things automatically!! You can't say that about too many electrical things in your home, now, can you?

I'm hoping you feel really good today and can nap if you need it. I'm off to get estimates for the damage done to my car yesterday when someone backed into me.

TheAuthor profile image
TheAuthor

Hi Twinkle0411

I am still around as usual but bed time for me shortly. I am so truly sorry that you cannot sleep and I sincerely hope that you manage some sleep at some point my friend.

I am genuinely sorry about your ESA payment, and I sincerely hope that it is all sorted for you now?

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken x :)

Twinkle0411 profile image
Twinkle0411• in reply toTheAuthor

Morning Ken.

How are you this morning? Thank you for the lovely message. It's so kind of you.

I hope you managed some sleep?? It was around 6.45 I think I finally got some sleep so like a zombie this morning.

My ESA eventually went in. It it effected my car insurance. I spoke to my bank and they could tell that twice the payments had been late.

The thing that worries me is that it makes it look I'm a bad payer of my bills and then my credit rating is effected. Then being on my own and young it's a terrible worry.

Many thanks for your time and Energy Ken I sincerely hope you have a good day.

Many thanks again my friend kaz.x

Twinkle0411🦋

TheAuthor profile image
TheAuthor• in reply toTwinkle0411

Hi Twinkle0411

I am fine thank you and I did manage a few hours sleep until the carer woke me up! (I am so ungrateful) lol.

I am delighted that you got your ESA sorted but as you say it can make you look like a bad bill payer.

I want to sincerely wish you all the best of luck my friend, and I truly hope that you are well and had a wonderful day.

All my hopes and dreams for you

Ken x :)

Hartleyhare2 profile image
Hartleyhare2

Hi Twinkle! Officially given. Up trying to get any sleep again!. I think I might have got an hour at about midnight. I think I dozed of using my iPad and my snoring woke me up! Lol Lost track of how many nights awake now. One night I did get four hours but that's about it apart from the odd hour hear and there. Making so many small mistakes around the house and spelling gone to pot. Some setances three or four times!

Hope you make it through the day safely and fit in a power nap!

Patrick x

Twinkle0411 profile image
Twinkle0411• in reply toHartleyhare2

Morning there Hartlyhare 2 (Patrick)

Many thanks for your reply. Goodness we sound similar as a good night for me is 3-4 hours.

Yes I truly sympathise I even had codeine last night but this didn't do a thing.

I'm hoping we both get through the day and get a chance to rest?? It makes it terribly hard to function and do the simple things hey.

As for the spelling my goodness I know I'm dyslexic anyway so at the best of times my spelling is not great but I just laugh about it to be truthful. No one will take any notice on here I'm sure he he as we all make mistakes when we are shattered and I wouldn't notice anyway he he.

Try to have a nice day keep smiling your not alone gentle hugs and positive thoughts your way.

Kaz twinkle0411🦋X

Whatamug1 profile image
Whatamug1

Ditto - It's now 06.35 and I've had no sleep at all .... Will try again tonight X What are we like?

Twinkle0411 profile image
Twinkle0411• in reply toWhatamug1

He he ditto too that was the last time I saw my clock and was awake again at 7,30am.

Zombie day and go slow it is for me. Are you with me ? Or are you managing? I'm hoping you may have managed to doze back off?

If not I hope ur day goes ok? And like me you can get some rest /sleep in today? I shall think of u today gentle hugs be safe.

Kaz twinkle0411 🦋X

Whatamug1 profile image
Whatamug1• in reply toTwinkle0411

Hi Kaz - NO not a wink......Pain in so much worse when you're tired. But we live to fight another day. Thanks for the gentle hugs X

Dee188 profile image
Dee188

I'm usually up until 2 or 3am depends when the meds kick in and start to make me sleepy but then wake automatically around 6 or 7am unless I've had a few nights of short sleep combined with the physical exertion of going outside for a few hours shopping/appointments etc then I might sleep an extra hour or so. Sometimes if I'm sitting down eg at computer or watching TV I start to fall asleep.

In addition to the fibromyalgia which was finally confirmed by rheumatologist last October I'm also hypothyroid and have been on levothyroxine (T4) since 1993 but after reading posts on Thyroid UK group I've purchased and started to try some Liothyronine (T3) to see if that can help me.

I've also changed my diet and after reading the benefits of a plant based diet (Forks over Knives and the China study) I've also recently started the transition to vegan diet and so far have cut meat/fish/dairy/eggs completely and have also reduced the amount of gluten products in my diet. Although its still early days (8 weeks) I think there has been some improvement as a year ago I struggled to get out of bed due to the pain which appears to be greatly reduced.

Although there is no guarantee any of the changes mentioned above will cure the problems at least I can say I tried and that's the best anyone can do.

Twinkle0411 profile image
Twinkle0411• in reply toDee188

Well done Dee188,

That's fantastic your doing all that. I have M.E also so I think the 2 don't help mixed together.

I stupidly got in the garden as moved the end of last year and have so much to do. The house has needed decorating along with the garden full or stones etc.

I think I stupidly did the crash and burn and have been paying the price since.

I think I also have another infection so that's not helping but hey we have to keep on going my friend.

I have a app on my phone and I'm lucky if I too get 4 hours solid sleep but then I seem to not be able to stay awake in the day so vicious circle.

If the M.E gets terrible I then could sleep for days so my poor body doesn't know if it's coming or going.

I hope u manage to get through the day restfully. Take care my friend your not alone.

Gentle hugs kaz Twinkle0411🦋X

Whitbyjet profile image
Whitbyjet• in reply toTwinkle0411

Well you getting four hours is so good compared to what I get I've an app that tells me exactly how I had sleep I get and trust me if I was getting four hours a night I would be more than happy as it goes I get between 5 and 30 minutes

Dee188 profile image
Dee188• in reply toTwinkle0411

Even when I have a good day (minimal pain/well controlled pain) I have to be careful these days not to over estimate what I can do or I will pay big style in the days after.

I have grandchildren 9mths/3yrs and my daughter in law (generally fit and well) is doing something called polyphasic sleep which is where she has about 4-5hours core sleep at night and 2 x 20-30 mins naps during the day and she finds that she has more energy than if she slept 8hrs and no naps.

Dee188 profile image
Dee188

Sadly I have paid the price (had to quit nursing due to physical/mental stress) of trying to burn the candle at both ends. Now its taking one day at a time and trying to repair the damage.

Twinkle0411 profile image
Twinkle0411• in reply toDee188

Exactly the same as myself I to was in the care field I was diagnosed with M.E in 2005 and only end of this year with the fibro migraines etc.

It seems a lot of people in the care field have these types of conditions as well.

Your not alone gentle hugs 🦋X

Dee188 profile image
Dee188• in reply toTwinkle0411

Yep, they wear us out then chuck us out like worn out dishcloths.

LifeOnSarz profile image
LifeOnSarz• in reply toDee188

So true - former NHS worker, now on scrapheap!

Whitbyjet profile image
Whitbyjet

No your not the only one awake I've been suffering from sleep issues for quite some time now it's not nice when you see every hour go by

JoyW profile image
JoyW

Yes, another bad night for me also. However I had been taking amytriptyline but (to cut a long story short) whilst they did help me sleep more they cause what I describe as panic attacks where I'd wake up suddenly, feeling a sense of real dread. It was absolutely horrible and so the GP took me off them as he said that in some people they can cause sleep disturbance. Now I am down to have talking therapy for my sleep problem. He also recommended a book but I'm not sure if I can mention the title here. I have exhausted all the usual things like, warm bath, warm drink and the like. Has anyone else been for this talking therapy and how did it go?

lizard57 profile image
lizard57

Hi twinkle

I'm totally with you - getting out in the garden with the fresh air, singing birds, New flowers, the dog running around, it makes you feel almost normal again, but that evening, and the next day - OH MY GOD !!!

This damn illness takes anything nice and ruins it 😲😲😲

And they wonder why we're depressed !!!

It's so unfair, it just doesn't give you anything to encourage you to fight the fight 😥😥😥

Puppy38 profile image
Puppy38

Hi, just wondered if your sleep has improved now ?, I’m lucky if I get 2 hrs each night, did you find anything that helps ? xx

Twinkle0411 profile image
Twinkle0411• in reply toPuppy38

Hi there unfortunately at the minutecmy sleep hasn’t I’m on amitriptyline to try and help with muscle spasms and to help sleep but at the minute nothing seems to be working but for me I’m sure the cold weather has not been helping sorry I can’t help on this one but if I find anything I shall message you sweetie xx

Puppy38 profile image
Puppy38• in reply toTwinkle0411

Thank you Hun, I’m also on amitripyline, doesn’t help either x

Twinkle0411 profile image
Twinkle0411• in reply toPuppy38

Hi sweetie I hope your ok today? I totally agree with you there. I hope you slept well last night? I got about 3 hours sending gentle hugs x

Puppy38 profile image
Puppy38• in reply toTwinkle0411

Hey, thank you, I got a couple of hrs, can I ask what time you take your amitripyline ? I normally take mine around 9pm but have read in another forum you should take it around 7pm, just wondering if it’s worth trying, how are you feeling today ?

Twinkle0411 profile image
Twinkle0411• in reply toPuppy38

Hi there puppy38 no problems in messaging sorry I’ve not replied sooner I’ve not stopped and like a zombie at the minute. I was advised to take mine by a specialist between 8 and 8:30 to get full effects I hope this helps you sweetie. How are you feeling today Ive not been able to think straight or do anything right today but you have to laugh hey anyway chin up or chins in my case lol I hope u sleep well and it helps you here anytime xxx

Puppy38 profile image
Puppy38• in reply toTwinkle0411

Hi I totally understand where you’re coming from, been feeling like that for a while.

Will try taking them a bit earlier and see if it makes any difference, thank you.

Ha ha I’m so with you on keeping the chins up, well trying at least, here’s fingers crossed we both get some more sleep tonight, I’ve forgotten what I look like without these bags lol xx

Twinkle0411 profile image
Twinkle0411• in reply toPuppy38

Hi there Puppy38 how are you? I hope your ok? How have you been sleeping ? I’ve been lucky to get 3 hours and I’ve been in agony with my back and legs. I could be running a marathon in my sleep lol. I thought I would see how you are as I’ve been thinking of you I hope you manage to sleep ok?? And a gentle hug xx

Puppy38 profile image
Puppy38• in reply toTwinkle0411

Hi so sorry to hear about your legs and back, you I think we probably are running in our sleep lol.

My backs playing up and my hips, I think I need a new mattress really, I managed an hr last night, fingers crossed for more tonight, hugs x

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