How many of you are long-term insomniacs? - LUPUS UK


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How many of you are long-term insomniacs?

Looby profile image

Maybe this should be a poll...... and I'm intrigued to know how other friends on here "spend" the hours awake.

For a lot of my adult life, I've had periods of insomnia. This has been from a week to several months, with cat-naps during the daylight hours. This was more of a problem when I worked full-time, but now I just try to catch up on sleep when I can (this is rarely in the hours of darkness).

My husband has a theory that it is because I subconsciously dread waking up from deep sleep, because nine times out of ten this is to an awareness of acute pain, brain "fog", and struggling to move my limbs and back. He could have a point....... I've also read that this is one of the side effects of taking Plaquinel.

I try not to stress about it. After a day of taking meds (including steroids) my bod is more comfortable by evening - so I've become creative. Various crafts, and writing stories and poetry on the PC. I love taking photographs - and these are fun to play with in Photoshop.

Most of my family live in Australia - so I can Skype them in the early hours, or follow them on Facebook.

Then , of course, there's this Blog site!

16 Replies

yeah I've not slept tonight again as usual...

I don't sleep well since having lupus, and occasionally before that. I listen the the World Service - very soporific.

I don't sleep at all at night unless I take zopiclone to knock me out lol and then I can't even remember my nyt at all I only try and do this one a week at the most for pure exhaustion x

I am still awake and it is now 10 AM. Here I thought it was me!! My husband says the same thing as yours. I tend to take small cat naps here and there that way I don't feel so stiff and my pain is tollerable. It is amazing the amount of garbage that is on TV in the middle of the night. It is sad when everything on all the crime channels are repeats and you have seen every episode of all the CSI's ever made , find all the different House Wifes of every city in America exciting and wish the live streaming of Big Brother overnight was still available when Big Brother series starts. I have always considered myself as an educated woman with a degree in Nursing but these days, my brain has turned to mush!! XX

When l cannot sleep l spend the time either reading or researching all l can about Lupus, at least that way l feel l am doing something useful with my time and have learnt to understand the illness much more - which helps me come to terms with it more.

Me and it has nothing to do with plaquenil Looby. I stopped fretting about it over a decade ago. Just go with the flow, sleep when you need to and can. Fighting it ... overdoing things ... and you're on a hiding to nothing. My saving grace was finding They have re-runs of all the National Geographic, Animal Planet and Investigation Discovery progs, among lots of other stuff, that we don't otherwise get to see in UK. I watch on my laptop - much better than UK TV. Entirely legal to watch but don't download anything. Putlocker has the best links.

Looby profile image
Looby in reply to Tigerlily4

Thankyou for giving me this link Tigerlily4...... Summer telly in the UK is the absolute PITS! I've now bought myself an e-reader, so I can relax in bed and still be a bookworm!

I actually love the peace and quiet of "the wee small hours" and do catch up on rest when possible......

Interesting answers everyone....Thanks!

hi, I sleep poorly too; lucky to get 4 hours straight. on the rare occasions I do sleep longer I have nightmares and wake up screaming x

Looby profile image
Looby in reply to caninecrazy

Does the dog hide under the bed when that happens????

Hi, I have only been diagnosed with Lupus and Hughes this week. I seem to fit alot of the symptoms so think my immune system is on a rampage through my body. I have always had insomnia on and off but really struggling. Last night went to bed around 11pm and woke up at 1.20 pm I take sleeping tablets and antidepressants and even tramadol but still wake up. Was awake till 6 am then dropped off for hour and woke up just before 8am. I so exhausted and pain isnt subsiding. Is it part of Lupus the insomnia?

Looby profile image
Looby in reply to Tonkawoman69

I'm not really qualified to answer that one.....other than to say, a lot of us seem to have it as part of the "package" !!!! If you have just been recently diagnosed - there will be questions "weighing on your mind" and it may help you to obtain the DVD from, to allay some of your apprehension about managing an auto immune state.

I'm hoping that you did not take all those meds at the same time!.....they would tend to work against each other and not do you much good. The maximum Tramadol over 24 hrs should not exceed 6-8 tablets. (Apologies if you already know this....).

It would be worth mentioning to your Consultant/or GP about the insomnia, as they may have a gentler solution. Avoid stimulants in the evening (like coffee, tea, horror films....) and try some basic relaxation techniques, as natural sleep is far more beneficial than drug induced sleep.

Like others have said - let's not stress about not sleeping through the night. Animals sleep in "snatches" and we are, after all, animals. The body has ways of catching up on what it needs....... hope this helps!

Oppps yes I do take all those meds at same time before bed. I also take nifedapine which is a calcium channel blocker did ask chemist about warfrin and nifedapine said OK as long as not taking for heart. But never thought to ask about tramadol and sleeping tabs and antidepressants. Might check with nurse tomoz. Thanks Andrea

l suffer with insomminia l think all lupies do in forms, it drives me bad but l do catch up in the end, you get use to it after a while.

looby; no my dog doesn't hide under my bed! lol. u made me giggle reading that :)

I just have my neighbour raise his eyebrow at me in the morning and a thanks! lol x

I always used to need loads of sleep and never had any difficulty sleeping at all. That's all changed with lupus. Sometimes before a 3am start, I've had no sleep at all and have to complete several 12 hour shifts in a row this way. (No surprise that I'm off sick with a flare). It has become a nightmare (or not for lack of sleep!). No concoction of pills seem to help. I'm going with the general consensus that this is part of the package.

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