SLEEP

[ebril]

I have SLE, Raynaurds and a whole load of other thingy's as i like to call them. I so cant sleep properly even taking a sleeping pill and I know its part of the Lupus but does anyone have any ideas that could help me just get one good nights sleep.

[moss]

i have simliar condition and also take sleeping med s -dont feel like i sleep sometime. infact i no i dont sleep well cause i look at phone to check what time it is

[Thaddeus]

Hello Ebril

My sleep was disrupted for years and it still goes into odd patterns from time to time. You will have to accept this as part of your life now. you could try melatonin.

For me, i didnt want more drugs so I learned make the most of any and all quiet time, good quality rest is valuable.

My mind used to race at night so i learned to marshal my thoughts, by building a go-kart in my head. I would systematically go through the process and from start to finish, and if I had not gone off, i would start again. You must be familiar with some process or other - it doesnt matter what it is, but if you stick to every tiny detail, the effort involved is usually enough to tire you mind and send you to sleep, but if not it will stop you from getting into the mental mess which befalls a lot of people who cannot sleep.

Very quiet peaceful background music may also help.

You have to find what works for you.

[chrisj]

My SLE doctor prescribed amitriptyline last month, I take one at night before I go to bed. She said I was suffering from sleep deprivation and the drug has helped, I'm thinking of increasing to 2 per night. Other than that have you tried relaxation while listening to music or a proper relaxation cd where you're taken through the steps? I go to sleep quickly but wake around 2 or 3am unable to get back to sleep no matter how tired I am and I was getting up at unearthly

hours feeling worn out...

[Lorelei]

After 15 years with lupus and fibromyalgia, I have only recently been prescribed a medication that controls my pain well enough for me to sleep through the night. It is called gabapentin. I believe that it may be similar to amitryptyline. I take 100mg in two doses during the day and 300mg before bedtime. It doesn't guarantee that I do not wake with pain but if I take a hot bath for 30 minutes before bedtime, then I can count on a good night's sleep.

.

I was prescribed gabapentin as treatment for my fibromyalgia. My first rheumatologist diagnosed the fibro, but never treated it. The cause of fibro pain is very different from the cause of lupus pain, but as the patient, the two are impossible to distinguish. That is why I believe it is so important for you to ask your physicians if you have fibromyalgia and then pursue treatment for it specifically!! The reward may be the first restful sleep you've had in a long, long time!

I hope that you will find a solution that works for you, ebril. It is so frustrating to be absolutely exhausted but not be able to get refreshing sleep!

Lorelei

[ebril]

thanks you all for the reply i also take amatryptiline im going to ask if I can up the dose and see if that helps and yes thaddeus i will try your suggestion and will definately ask my rheumy for more help because i really do need a good nights sleep

[Thaddeus]

Sleep is key to well being, Everything else is multiplied when you have not slept. Metal confusion, general irritability, pain fatigue, all so much worse.

[kaysie]

I use Hot milk lol, and bach's remedies they are working believe it or not i have a two yr old so sleeping meds are out of the question x x

[tulip47]

Have just had bad night once again (managed 2hrs), i was also put on amitriptyline quite few years ago but rarely get good night but i no longer lay in bed and stress, its time for hot drink good book and everyone to stay out of line of fire!!!! lol

Do hope one day there will be a breakthrough tho!!

[MandaM in reply to tulip47]

LOL also, yes the sleepless grumpy growl and snarl sends people scurrying into dark corners to hide! I can go with that one!

[NiksB]

Hi i have to say im ready to kill if i dont get a few weeks of good sleep. Over christmas i had 2-3 weeks of rubbish sleep and then i dont know what changed but im back to sleeping 12 hours a day which i need otherwise i cant function the rest of the day.

I take gaperpetin, amatrip, meloxicam and they all have a seditive effect. The amatrip works but take it early in the evening until your body gets used to it (it does make you dry mouthed) and if you take it late it rolls round to the next day which means you can lose days. I do take herbal stress relief for sleep aswell.

At christmas when i kept waking up at 3am i would go and make defac tea and eat a banana and watch tv but i found it became a habit, so now if i wake up my husband rolls over and i put the tv on with subtitles and i find something numbingly boring to watch and about half hour later im ready for sleep again and this way im detracted but still toasty and ready for bed.(i cant read books i get addicted to finishing them).

I know theres no magic wand but with bad sleep patterns makes the pain feel worse and the days seem so long bearing we have to deal with fatigue, if i do have a nap i make it no later than 3pm and only for 1and half is enough to not disrupt your sleep pattern. I would suggest look at your bedroom you dont want to be too hot because that will wake you aswell as if you get cold feet so try and work out what has woken you and try not to get frustrated i do think its wierd part of the illness but maybe with fresh eyes you might find something ( i have gone for light duvets because i found it difficult to turn over and i use light covers which i can throw off, I wear pjs because if i get hot i can stick a leg out and not get too cold).

I dont know a magic answer but you wont lose anything if you try everything everyone has suggested and im sure something will work and least it feels like you can take control of your sleep pattern rather than it controling you.

Good luck fingersxd

[chrisj in reply to NiksB]

I'm glad you mentioned the dry mouth Niks..I've stopped taking amitript as dry mouth woke me in the night it was so bad

I have Sjogrens and couldnt handle the effects of the drug as well, it made it 100 times worse...am so disappointed but there we are, will have to see whats said on my next app...the doctor did warn me but I thought I'd manage....Not sleeping too badly at night just now, have stopped falling asleep every time I sit down to relax....lol....sometimes feel like I could sleep 24 hours a day!

[ebril]

thank you all so much I thought I was the only one that suffered sleepless nights but obviously not...............

[Glen1]

I found that once I reduce prenisolone to 5mg per day I started having a good night sleep but as lupus started to flare up want the prenisolone & the sleepless nights returned. Take care x

[Hidden]

Hi my rheumy recomended good sleep hygiene so you try to have the same routine every night. Same bed time, no technology 1hr before, bedtime , this includes tv, computer, internet , mobile phone. And any relaxation techniques that suite you. Apparently reading a book at lunch time improves sleep at night. It does seem to help. Good bed mattress best investment you can make. Sleep cd can help. But same time habits do make a difference as does pain control

[MandaM]

I'd never put bad sleep patterns down to Lupus but maybe that could be an explanation. Why symptoms if everything Lupuswise in blood tests are within normal ranges or negative?????? I don't take anything for sleep, just shut my eyes and hope. Luckily i start work at 3pm so i can sleep during the morning if i need to get more hours in, otherwise i'm a non functioning, snappy zombie but then aren't most 'normal' people like this too?

[lupylupus]

Everything has been said, but I want you to know that you are not alone. It's madness as you know how tired you are and you could just give anything to get to sleep and it just wont happen!! Believe me I know ll about it and I think I wrote the book!!!!

I hope you get better soon and that you find a way of resting and sleeping. x x

[Tasman]

Hi Ebril,

sorry for the lack of sleep...I get up when I can't sleep and make up for it during the day, my bladder plays up so I'm up and down, I take nortrip, I'd heard amitrip can give weird dreams, I don't get dry mouth with it, but, I swear by my electric blanket and memory pillow, and I use a gel aswell as tabs for pain, have you tried the pain clinic?, I've been thinking too, sorry not much help, hope you get some sleep soon,

hugs,

Tas

[ebril in reply to Tasman]

Hi Tas, electric blanket no no I get terrible night sweats as well so that would make things worse but hope it works for you was thinking of a memory pillow and memory mattress will ask my rheumy about pain clinic thanks for that idea will let you know what rheumy says about that when I see her xxx

[moss]

if you find the answer please tell because i am awake at 3 am most night s and i take 2 mg diazepam and pregabalin. i must admit it s starting to get to me now as i have three children

[ebril in reply to moss]

Im with you and know how your feeling ive tried sleeping in the day because luckily all my children are grown up but just cant do it and I go to bed when Im really really tired...............and nothing someone told me to eat bananas and milk before I go to bed so going to try my first tonight and will let you know xxx

[moss]

for the past week or so i ve been awake every morning at 3 am. i dont get it cause i even take sleeping meds

[ebril in reply to moss]

me too sleeping pills, warm baths, lavender, ive even taken Kalms, ear plugs in my ears its just mad

[ebril]

Im seeing my rhuemy soon so will ask her about it again, and If I have any news about what she suggest will put it down on here for you all xx

[ebril]

Thanks everyone Im going to try another suggestion of Milk and bananas before bed someone told me that it works for them so instead of trying it for one night im going to give it a week so at least I said I tried...........and then have a word with the rheumy when I see her and as Tas said on this blog the pain clinic, which I never thought about before..........will let you all know xxx