Lack of sleep: It's getting worse,I'm... - Fibromyalgia Acti...

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Lack of sleep

Debsdelight72 profile image
17 Replies

It's getting worse,I'm sleeping for 2-5hrs sleep and I feel so exhausted,

I do the sleep hygiene as I was told by my GP,It drives me potty, I can't start roaming around downstairs because the stair lift is not working,

I can't believe I had to pinky swear I wouldn't go down without Hubby

What are your tips to get some sleep and what's the longest you have been awake?

I had my 1st B'day cake for over 30 years today, I've always said not to bother with cake and such and was not treated to 1 as a child( I was a naughty kid and didn't deserve 1, apparently that's put down on the list of mental health issues)

Happy Birthday to me 52 WooHoo

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Debsdelight72 profile image
Debsdelight72
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17 Replies
Pastafox profile image
Pastafox

Happy Birthday Debsdelight72 have your cake and eat the lot...

Debsdelight72 profile image
Debsdelight72 in reply toPastafox

Thankyou Pastafox

Cat00 profile image
Cat00

Longest I haven't slept for is 4 nights, then I slept for 2 hours and then no sleep again for another 2 nights. This pattern continued for a couple of weeks until I started sleeping for about 4 hours a night. I lost 2 stone of weight in that time. It was very hard, completely lost my marbles.I also did a clinical trial for insomniacs with chronic migraines that used sleep restriction and CBT but sadly it didn't work on me so I basically sleeping about 4 hours a night for 2 weeks, trouble is even that sleep was very broken up so it was a low quality 4 hours. I was so tired!

A month ago I started a new drug for sleep called Quviviq, you take it every night. It worked very well at first but bc I've been weaning myself off Amitriptyline it's not so good now. I was on 90mg of Amitriptyline, I weaned down to 50. I was only on Amitriptyline for sleep so I was hoping I could give it up if I'd found something else.

I have ADHD and Quviviq works on the part of the brain that is responsible for alertness. It has been wonderful sleeping almost normally for a bit!

I'm glad you got some cake, so wrong you didn't get it when you were young! I went to boarding school at 12 so I didn't have any birthdays after that, and no cake either- we both should have had cake!

Debsdelight72 profile image
Debsdelight72 in reply toCat00

Thank you Cat00,

I worry about the stroke side of things too, I've already had two and GP said these are warnings for something bigger so I take the blood thinners and all the rest of it and hope I don't have another,

Now I'm on these statin things too, It just keeps going on ticking boxes,and take new meds,🥴

I've been told to try some chair yoga and stretch with palates band,

So I will have some B'day cake,Too big for just Hubby and I to eat so we are giving some to our neighbours and freezing some🎂

Take care Cat00

Debs

Shooby profile image
Shooby

Debsdelight72 Hi sweetheart do you take anything to help with sleep? Anyway Happy Birthday (belated) 52 times from me💗💐🎂🍹Oh and go on Spoil Yourself. Lotsa love and gentle hugs. Xx

Debsdelight72 profile image
Debsdelight72 in reply toShooby

Hi Shooby,

Thank you for B'day wishes and ❤️'s and🤗's,

Straight back atcha , I take 100mg of Amer/tryptline (soz) every night they don't work,but I keep taking them and just hope maybe I can get to sleep before 4 am and get up before 9am 🤞

Take care

Debs xx

Shooby profile image
Shooby in reply toDebsdelight72

Hi Debsdelight72 I know you've probably done these thing but here goes- so first off have you been back at Dr's recently because I'm sure that you taking 200mg of Amitriptyline each night's not right it should be knocking you for seven?, what time do you take your pills?, because I'm pretty damn sure that going to bed at 4am then up a couple of hours later that's not even enough sleep for a "hamster". If your Dr's not helping demand to see another because this is seriously not good for you, your heart,and you must be in a fog everyday!! So go back to Dr's before you end up in hospital. Let me know how you get on. Xx 💗

Debsdelight72 profile image
Debsdelight72 in reply toShooby

Hi Shooby

My GP is a lovely woman, She gets out her note pad every time and writes down all my problems that I worry about instead of typing away, I still can't make eye contact with her and stutter or go totally mute and then panic, So I write her a note (okay a book)

So thank goodness for Hubby to explain again!

My night time meds consist of :

Amitriptyline 2-50mg

Dihydrocodeine modified release 2-60mg

Tramadol 2x50mg 4 doses through out the day

Diazepam as needed but not all the time,

I start the bedtime meds at around 9pm, This morning I eventually fell asleep at 7.30am The dog charged in at 8 I fell back to sleep about 20mins later with the dogs leg over my face and my arm around her full up belly, Hubby came in around 11am with coffee,

This is a typical night, most afternoons I will have a 30min dose at 3ish

Not really sure whats going on but all my pain meds started at a minimal dose and worked up to the high dose, I think it would be different if I'd dived straight in I'd be in another world all of my own,

Oh well, the show must go on

Debs x

Southport-beach profile image
Southport-beach

Hi Debsdelight,

Happy Birthday!

I suffered from chronic insomnia for many years and think I was doing well if I slept for 4 hours a night. At worst it was as little as two hours. I have a couple of suggestions:

1. The menopause can really affect sleep. If you haven't already it might be worth looking into HRT. Oestrogen gel has helped me.

2. Twelve months ago I was really struggling when I found Sleep Station. They offer online counselling. It is hard and you have to accept sleep deprivation for a short time whilst they reset your body clock, change your perception of sleep and your relationship with your bed/bedroom. I wouldn't say they worked a miracle but I now sleep 7 to 9 hours a night with the occasional poor night. They work with the NHS and will apply on your behalf to your doctor for approval. As my doctor was well aware of my insomnia he approved the application and I started on the course for free very quickly. If you would rather go privately Sleep Station charge around £300 or The Insomnia Clinic offer a similar course (with the option of additional face to face consultations) for around £200. I had got to the stage of dreading going to bed and couldn't face another night of tossing and turning.... It doesn't work for everyone but it has really helped me.

I really hope you find a way forward. Insomnia is horrible and really doesn't help fibro exhaustion and pain.

Sending gentle hugs.......

Debsdelight72 profile image
Debsdelight72 in reply toSouthport-beach

Thank you Southport -beach,

Every time Hubby and I visit Southport the tide is out! what time and how far does it come in?

😀, (If you live there)

We had a plan,

Every day we were going down stairs and spend between 10-20 min sessions out of my room, Someone knocked on the front door and for whatever reason my brain screams and translates in to terror and get back up to my bed where I feel safe, I have to take up to 60mg to go to appointments,

So I've got some catching up when our stair lift is back in use, Blooming anxiety, I think the past four years being a recluse hasn't helped,

Never mind, Thank you, take care

Debs

Midori profile image
Midori

Hi, Debs.

It sounds to me that you are feeling thoroughly frustrated by your inability to move freely around the house, and this may be partly the root of your sleep problem. Have you got a day for the stairlift to be repaired/Changed?

Sleep Hygiene doesn't work for everyone, It doesn't for me. I have a radio on quietly in my room, and I drift off to that.

I'm lucky in that I don't have stairs to try to manage indoors, But I do have mahoosive ones in the garden; and that frustrates me as I can't get to the best part of the garden! So, I'm currently growing a Jungle! (lions and tigers and bears, oh my!)

Hope you had a lovely birthday,

Cheers, Midori

Debsdelight72 profile image
Debsdelight72 in reply toMidori

Hi Midori,

Thank you for your B'day wishes, I had a lovely quiet and time with my Hubby😍

I'm in my bedroom all the time working at leaving my room for longer periods each time,

We were told we would get a phone call Mon or Tues to arrange a call out, £80 just for turning up, It's just to put new batteries in,We already brought them and took the old one's out, but can't put the new one's in, Too tricky for us,

I have to use my walker or power chair down stairs (depending on how much pain I'm in) We have some well placed furniture and use like a pin ball machine 🧷⚽,

It would have been easier if it was downstairs,because the stairs are narrow and very steep My butt will fit past (just) but it's getting a foot hold once on the other side,Impossible when in pain 🤕🤕 My garden used to be beautiful and I loved getting dirty hands planting up, We pay a chap to cut back and weed, all of my plants are in pots due to a Northern typical concrete yard,

We need more jungles anyway, When I lived south we'd leave a chunk for the wildlife,and we were in a bungalow, If only we'd had some hindsight, (I miss the countryside)

Take care

Debs

saxcat profile image
saxcat

Hi Debsdelight72

I go from periods of only getting around 4 hours o broken sleep, to sleeping all the time.

I do prefer it when I'm sleeping all the time, although even sleeping sleeping all the time I still never feel refreshed, Its still broken sleep but lots of sleep compared to when can't sleep.

Sometime when I can't sleep I take diazepam, they are prescribed for muscle spasms & anxiety but they can often help me nod off if taken at night.

When nothing help sleep and pain levels are not too bad I just give in to it and stick the tv on or read books, but when pain is bad I just cry and lie there going delerious.

Sorry prob not much help.

I've never had birthday cake either, never got birthday cake or parties when a kid either.

((hugs))

Happy birthday 🎂

You enjoy your cake 😊

Debsdelight72 profile image
Debsdelight72 in reply tosaxcat

Hi Saxcat,

It's the dreaded💩💩💩y curse of Fibro,💩

I live in hope for a cure but other things need curing sooner out there,

Probs are halved when shared, I'll have 10-20 mins sleep a lot then awake for hours, I don't know what day it is half the time

Thankyou for the B'day wishes

Take care

Debs😪😪😴😴😴😴

CheetieCat profile image
CheetieCat

Happy Birthday Debs!🎉 from another non sleeper & non birthday caker!

My first Birthday Cake was from my partner (I don't do birthday's either) but he got me my favourite white chocolate (in my 30's when he realised) and it was bl**dy delicious 😋

Have a lovely day, really wish I could help with your sleep but sadly still working on that one too! 🤗🤗xx

Debsdelight72 profile image
Debsdelight72 in reply toCheetieCat

Thank you CheetieCat,

I think I might make it a tradition every year 😋😋

Hmmm🤔 Just wondering If it might be okay if the cat and 2 dogs might like a nice cake on their B'day too ?😋😋 Glad your cake was tasty, I havn't cut mine yet, My appetite is non-existing at the moment,

Take care

Debs xx🤗🤗

Yassytina profile image
YassytinaFMA UK Volunteer

Happy belated birthday, hope the cake was yummy xx

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