lack of sleep

[carollesley]

recently diagnosed with lupus wondering if any one can help as always tired but cant sleep i go to bed only to lay there for hours awake can any one advice me thanks

[MargaretGail]

It is one of the biggest problems with SLE. My brain goes into overdrive once my head hits the pillow. I describe it as Quentin Tarrentino style montages (flashing images). The best thing I have found for it is to try and do something boring or calming before bed. Failing that after one hour of staring at the ceiling it's time for a cup of tea and try again later.

[Patricia2015]

I take a small dose, 7,5mg of amitriptyline one hour before going to bed. In combination with structure in my going to bed and waking up times, everyday around the same moment, on working days and weekends, I'm able to get sleep and sleep through about 80% of the nights.

However I still wake up each day as if I was run over by a lorry after have run a marathon. Achy and exhausted.

Been diagnosed with UCTD and some other syndromes.

Good luck!

[Hidden]

I wish I had an easy answer. It is a horrible feeling. Laying there zombie like tired only to not be able to sleep. Will be very curious to hear what others say. My doc wont allow sleeping tablets although when I have been really struggling I have been given a low dose of valium. Just enough for one night though. Wish you luck!!

[cuttysark]

What about trying a small dose of antihystimine. My doctor prescribed me some Phenergan and it has stopped me waking evry night at 2.30 on the dot!

I do also have Temazepam but use it only if we manage to go away for a short holiday now and then.

You can try the antihistamine over the counter first if you want. I don't think in very small quantities they will interact with any of your prescription drugs but possibly best to speak to your GP first. X

[carollesley]

thanks for your help has helped a bit

[GloomyEeyore]

What I found helps is wearing an eye mask. I am also on 30mg amitriptyline at night but would still find myself lying awake for hours. Still have the odd night lying awake for hours wearing the eye mask but not every night like before. It is a good quality, thick one so that all light is cut out.

[lupylupus]

Hello,

I can truly identify with you 100%

I have struggled on only one or two hours on occasions and it could be night after night. I still had to go to work.

I tried all sorts of remedies but they were a waste of money for me because it was my lupus that was affecting me.

To help with this my medication was increased and I was prescribed amitriptyline.

I still have very bad nights but when they start to build up I take the smallest dose of amitriptyline about 7.30 - 8.15pm and when I go to bed I sleep better.

The problem with taking it later in the evening is that I am very dopey in the morning and struggle to get out of bed.

I have found that taking amitriptyline on occasions sorts me out for a while.

I don't however take it on a regular basis as I don't want to depend on it. However, now my symptoms are being more controlled I find this works well for me.

The other option is to look after a couple of my grandchildren for a a few days and you wont need a tablet to go to sleep!!!

Wishing you all well and a very good nights sleep every night.

Mgt x

[lupie46]

I take large doses of amytriptiline and Zopiclone and still can't sleep 😞 I think it's just something we learn to live with. Good luck 🍀

[Roanna in reply to lupie46]

Unfortunately, when taking these for so long you build up an immunity to them and then you go stronger or you can't get that same effect. I've had to stop using them for 5 years to get the effect from them so always try without first if you can. Even gravol no longer works for me but I have to admit once I came off hydroxy chloroquin I don't have nearly as much problems sleeping unless I'm stressed about something. I feel for all of you and have too lived with the lovely black rings under the eyes only too long.

[bones-bones]

I take Zopiclone and as soon as my head hits the pillow however sleepy I am my brain Becomes hyperactive. Often I am reading my book at 2am. And I STILL wake up early !

[Roanna in reply to bones-bones]

Try not reading in bed, just in a chair or on the sofa. You can loose the effects of the med if you don't try to sleep right away.

[LUPUSadmin]

Hi Carllesley,

Welcome to our community!

There can be a number of factors that contribute to insomnia. Things like medication or fatigue can play a key role. It's a good idea to keep your doctor informed of your sleep problems.

Additionally, it might be a good idea to look into sleep hygiene. There are some great tips here: sleepfoundation.org/ask-the.... It suggests things like avoiding TV in bed and encourages exercising early in the day. Have a read through and see what might be practical and helpful.

If you'd like a free information pack about lupus then you can apply for one here: lupusuk.org.uk/contact-us

George

LUPUS UK

[Cann]

Could you be hungry? Have you tried eating a banana not long before bed time. If you have a busy evening after your meal, you could have used up your nutrients and your body won't let you sleep until you have replenished?

What about meditation and prayer - that helps me - gets me sleepy?

I also read in the evening and make sure I have at least an hour with no electrical items on including TV, phones etc. and certainly not having them in the bedroom.

Make sure your room is completely dark - using a felt mask if necessary to cut out artificial light smog.

[rlupus]

I have the same problem nothing seems to work even with medication , i just end up falling a sleep nearly every afternoon !!

[Iona467]

I have Lupus and Fibromyalgia. I take sleeping tablets each night but cannot sleep. I would do anything to find the secret. In too much pain and fatigued to fall asleep.

Let me know if you find the secret of falling asleep quickly! X

[83meggie]

I have had SLE for two years commencing 2 years ago. I sympathize with you not sleeping, it is so distressing. Go to bed tired ,0100,0200 still awake !!

I now cool the bed off.go down stairs,slice bread and marmalade,return to my cool bed,most occasions go to sleep.My other trick is to make myself comfortable on he floor,old thick throw to cover me,manage to drop of for an hour or two,get back into bed and sleep !!!!! silly I know.I am fortunate that i'm an active 77 year old and do not have to go to work in the morning.see if anything like this helps.

my rheumatologist has given me amitriptyline 10mg taken before retiring.

Good luck Carollesley.thinking of you.

[BINNEY]

Hey there sadly this is one symptom I think almost all sle patient's have i take Advil pm or Panadol pm when I'm having this problem and really need to sleep especially if I have to get up early for work or something. They were the most mild solution I could find.

[Lacarp1]

My Dr gives me ambien so I rest well..he says the key with lupus is to get lots of rest..good luck

[Asarahjohnson]

I also take paracetamol. I think it reduces the low grade fever that I have in flare and helps sleep.

I was taking amitryptiline but it didn't help. I got my ferritin checked which was low because my hair was dropping out and since taking iron I sleep a lot better and wake up refreshed.

Also gave up gluten and now when I get glutened I cannot sleep so that was part of it.

[Asarahjohnson]

And steroids. I really couldn't sleep with steroids

[cuttysark]

Another thought, I think the black pea soup darkness is important. As I said earlier I take a little antihystimine ,but last year with no extra sleeping aid tablets, we went on holiday to the Scottish islands.

We were out in the country and it was so dark I needed a torch to go to the toilet. I could see nothing at night at all, even my hand in front of my face.

For seven nights I slept right through!!!!!

All changed back when I went home.

I need blackout curtains, even the moon and stars can light up the bedroom never mind street lights!!!

Must also try a sleep mask as long as it is a comfy one!

[Kokkonas1]

The way I deal with sleep deprivation due to lupus at night, I either have a cup of horlicks/hot chocolate and/or play a game on copmputer or read a book. This seems to work for me. Furthermore, stay away from coffees and teas, and anything else for that matter which may contain caffeine for a couple of weeks. The more you can sleep, the fewer flaire-ups you will have. Having around 6-8 hours sleep is paramount for lupus sufferers. Hope this help you too!