I have been diagnosed with SLE, Discoid, Reynauds and Sjorgens. I am currently taking 200mg Azathioprine, 2000 paracetamol plus Gabapentin plus other pain killers. I can't sleep for more than two hours at a stretch and wake up feeling just as tired as when I settled down for the night. Has any one any suggestions for a decent sleep other than the dreaded sleeping pills? I refuse to take them on a matter of principle, enough pills is enough, 26 a day give over!! At the moment, it's a third or fourth glass of wine to try and help. Any suggestions please??


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40 Replies

  • Hi KathinAryshire

    What a lot of pills you take, you must rattle and it's a lot to organise! Like you I don't sleep very well due to pain. Have you tried Amitriptyline ? If you haven't could you take it instead of one of your other pain killers? I take 25 mg. What dose of Gabapentin are you on?. They can cause drowsiness so could help with sleep. You must have nerve pain as your taking those, it's a lot to cope with!. Hope I've been a little help.x

  • Thanks Misty14, I have tried Amitriptyline but my stomach decided it didn't like it! I do rattle as I move sometimes, I need gabapentin to try to soothe the burning in my legs and feet, it takes the edge off enough mostly. Thanks for the help.

  • Hi KathinAryshire

    I get burning legs and feet that taking steroids helps with. Do you take them?. I hope you get sleep help from your GP as I know sleep deprivation doesn't help us cope. X

  • Hi Misty14, I didn't realise you could take steroids for the burning sensation, that's why I take gabapentin, my gp is most reluctant to let me take any extra steroids, as in flare I take a massive, decreasing dose. However, I will ask about this when I see her next week. Many thanks

  • Hi KathinAryshire

    I find the burning is inflammation for me but it might be different for you. My doctors are very careful with steroids too for me. What dose do you take daily or for flares ?. Let me know how you get on Good Luckx

  • Hi Misty, I don't know what the cause of the burning is. Insofar as steroids are concerned, I don't take any as a maintenance drug but in flare I take 40mg daily (8 pills) and these are reduced by two weekly until the final week of 2 pills daily. I have found personally that I don't have any withdrawal problems.

  • Hi KathinAryshire

    It will be interesting to see what your GP says. It might be that you could stop Gabapentin, it's a strong drug and my understanding of it is that it's given for nerve pain and sensations like tingling but I'm no expert I just speak from own experience. Do you see a Rheumy regularly?. Might be worth asking them too. Good Luck

  • Hi Misty, you're quite right, gabapentin has been prescribed for tingling sensations all over, it is so bad it will wake me, it happens 24/7. I do see a rheumy but she is so busy the appointments are 7 to 8 months apart and not due another one until end of May. Many thanks for the comment though.

  • Oh dear, I really feel for you as I've suffered with problems sleeping for many years due to this illness too. I'm currently getting around between 3 and 5 good nights sleep a week due to new meds from the consultant, which seems to be helping with my lupus symptoms and means I get a better sleep. I really don't want to sound pompous or righteous and understand why you have a glass or two of wine, but have read that it won't help if you're having sleep problems, so maybe have a chat with GP about reviewing your meds to help you sleep better. All the best, I hope you get it sorted as it's awful to not get a good nights sleep and how it affects us.

    Take care

  • Many thanks Slowmo, I am so glad your new drugs have helped, as you suggest, a word with my GP next week is a good idea. Many thanks.

  • I was diagnosed with lupus last year after being ill for 3 yrs. I'm constantly tired and weary. I've had two good nights sleep in three year. I usually get 3 hrs before I wake up in pain. I can sympathise with you but nobody medically seems bothered. Had a bad day yesterday n even my husband said get a grip. Even he's fed up me always being ill. Hope you find a cure for ur sleepless nights and when you do post it on here and il try it x

  • Goodness, I thought I was sleep deprived, two good nights sleep in three years Ralphie55, how on earth do you put one foot in front of the other? If I find a remedy, I will send you a message and we can celebrate being awake together!!

  • I was dignosed last year ad still don't get a good night slep 3/4 hours of good slep after that I'm tossing ad turning the rest of the night, I started taking sleeping pills to get me bak init a rountain but it dint help only take them when I'm really tried ad need to slep. Hope u find away speak to ur gp all the best

  • Thanks for the good wishes, I intend to see the GP and see what can be done. Here's hoping you have a better night tonight.

  • Sounds counterintuitive but if you find yourself not being able to sleep just give in to it - i.e. try not to battle it. Just sit still and find other stuff to think about while you're waiting for sleep. It is like tricking your brain into going to sleep while you're not looking, that kind of thing.

    Try not to drink liquids for an hour before going to sleep, if you can. The worst thing is to need to go to the loo just when you're falling asleep.

    I also find that when I've been walking outside for 20 minutes or so, or been in the garden for a while pottering (nothing heavy, mind) I tend to fall asleep a lot easier.

    But that's what works for me - since taking Mycophenolate I find I can't fall asleep that easily and then get such vivid/interesting dreams that I wake up too early.

  • Thanks Purpletop, I'll try just sitting still and see if I can get back to sleep.

  • yes of course, i get sleep problems when i am stressed (which sometimes causes the onset of my lupus)

  • Hi I am in the same position i take over 26 pills a day i have tried to get them cut down but my GP and consultants say no i need them or i will be worse, I hardly get any sleep during the night i have home oxygen through the night to for chronic obstructive airways, along with lupus and anti phos lipids. I get so down and depressed as i am so tired and no energy most of the time but i have to just listen to my body and just do what i can when i feel up to it.

    And have to live with it and cope the best i can. keep well x

  • Sorry you're on oxygen rlupus, at least I only have to have the puffers. If you can't sleep, what do you do when that happens??

  • Hi Its very hard i become so tired i end up sleeping on and off during the day and i think it makes things worse but there not much i can do as i am on nebulisers at 4 times a day and twice in the night so i just have to rest as and when i can. c

  • You poor thing, having to take nebulisers twice in the night, so you can never see any light at the end of the tunnel of a good nights sleep knowing that it's going to be interrupted whatever you do. I do so wish you well. Hugs.

  • Thanks you keep well to x

  • Hi, I'm sorry to hear about your sleep problems. For years I struggled by on very little/fractured sleep - and it was awful; so I really do sympathise. For years I also resisted taking sleeping pills - of the Z class. But then I tried them - and really wished I had done so earlier. I can certainly see how one can become addicted. However, after some trial and error, I set myself the goal of taking no more than 7 a month, when I really need them (which seems to be connected to my menstrual cycle and also the full moon) and at the lowest dose possible (which can now be just under 2mg). This has made a huge difference to the quality of my life. I was offered Amytriptilene, which I've heard is good, but I prefer not to take another pill day in day out. I would also reiterate Purpletop's advice; I have mindfulness meditation to be very good at helping me learn to calm my racing mind - and only take a sleeping tablet when this simply doesn't work of a night. Good luck!

  • Many thanks for the good wishes MrsMouse, not knowing anything much about sleeping pills, what is the Z class?

  • Hi. The so called Z class sleeping pills should properly be called nonbenzodiaczepines (Wikipedia has a relevant page, for more info). They are a newer generation class of drugs and include sleeping pills such as zolpidem and zaleplon, both of which I have tried. I prefer the latter but these things really are trial and error and subject to personal reactions, if any.

  • Crikey Mrs Mouse, I am so glad you managed to spell nonbenzodia...... I've never even heard of these and wonder if my gp has, I shall ask next week. Many many thanks. Hugs and wishes for a good nights sleep for you tonight.

  • A big fat YES to the not sleeping and very common Kath. I know you have a business to run and really sympathise though. It just makes life that much more of a bitch. In almost 30 years I've not found a solution to this problem apart from attempting not to over-do stuff and putting time aside to catch up on sleep during the day. x

  • Oh Tigerlily, many thanks, finding time to catch up during the day is problematic to say the least, but I will try to fit it in as part of the daily routine. How on earth you have managed all through the years I will never know. Best wishes

  • Me neither Kath, lol! I guess it came through bitter experience. I was forced to give up my career and find other fulfilling things to do that allow me to rest or sleep when I need to and also avoid the tremendous psychological stress of having set working hours and persistently letting down employers and colleagues. Having to slow down and change my life in this way was a huge blow and caused immense problems initially but I recognised quite early on it was necessary for the sake of my health. With the benefit of hindsight, I'd say this has been the best weapon I've employed during my long battle and my Rheumatologist agrees - it's certainly proved more beneficial than any prescribed drug! Still early days for you I know ... takes us all some time to find the best ways in which to manage. x

  • Dear Tigerlily here comes the third attempt, fingers won't work too well at the moment. I am so sorry that you had to abandon your career and other matters, this is the stage am at at the moment, if I sell my business it means selling my home, which I love so I shall carry on for as long as I can. You have my admiration for taking such a life changing decision and for struggling on for so many years. On a brighter note, how did the litter turn our?? Love and hugs

  • Thank you so much Kath but there's not much now to be sorry for on my account. In fact it persuaded me to focus on and indulge in my passions and life is now filled with those, which brings me tremendous joy and satisfaction and is a really good distraction from the endless pain ... distraction being my second-best cunning weapon in this battle ; ) Of course I remember your situation and totally sympathise ... you live/work in the most wonderful place that it would be devastating to leave. Living with lupus can easily feel all about the endless loss of so many things in the beginning and, as I said when we spoke, takes at least 2 years after diagnosis to get your head round and learn to manage. I just hope you have enough help with the business meanwhile to protect your health as much as possible while you suss out the best way forward. I'll e-mail you some photos to coo over - all is going really well. x

  • With the utter fatigue that comes with lupus comes the sleeplessness.I am on methotrexate injections,morphine and hydroxychloroquine(enough is enough)and I still can't sleep.I do take a sleeping pill called Zopiclone which,allow's me about 4 hour's sleep(better than nothing).I don't like taking pill's in general but,the Zopiclone 7.5 mg help's and give me the much needed sleep that I need.

  • Many thanks Binkey, I don't think I could manage on 4 hours sleep each night and you have my admiration for staying sane!! Thank you so much for taking the time to reply. Here's hoping you get six hours sleep tonight!! Hugs.

  • Hi Kathin, good post. Can completely relate. Whilst the fatigue can set in easily and we have to pace ourself it seems a restful night sleep can be counted on one hand. Lately I can't sleep until 2 am then wide awake by 4am/back down stairs for an hour or so then back to bed where after 6 am I am comostosed until 11.30. Trying to break the cycle and had also considered sleeping tablets. Try to do the mindfulness thing but sometimes I just have to come and sit downstairs until I feel sleepy. Like Tigerlily I try to not over do it during the day so can rest if needed. I will read all these suggestions with interest. Thanks for raising this. xx

  • Dear Mstr, you and me both!! Up and down, though I can maybe sleep till midnight it is then problematic, bearing in mind my alarm goes off at 0530 and my staff arrive an hour later so must be up and making sense by then. What I have found is that I sleep on a full stomach so I have delayed dinner time until 8 or 9 which means by ten I am seriously dozy, the flippin' snag is after about two or three hours sleep that's me and the waking time in the small hours seems so lonely. Here's hoping you manage to have a decent nights sleep tonight and a hug to hope you do.

  • Thanks:) and same to you too xx

  • Agreeing with Mstr that this was a really good thread. Kath, you need to join Facebook! There's always someone, somewhere in the world awake and posting interesting stuff in the wee hours. BTW, my friends have been referring to me for some time as "Batgirl" - hahaha!

  • Flipping heck Tigerlily, you are talking to an idiot with a computer, wouldn't even know how to start with facebook, to get on this site for me is an achievement! Hugs.

  • Hi KathinAryshire

    I was trying to see if you could take one drug less, we can end up taking so many!. The tingling must be horrible, does Gabapentin help?. If you want to see your Rheumy before end May , you could see if you can go on a cancellation list. I do this and it does work. I would be interested if you get help for sleeping, that can be very debilitating so good luck for seeing your GP. Hugs X

  • Hi Misty,

    Yes gabapentin does help, it takes the edge of the tingling which is like when the hairs on you arms stand up magnified by a hundred, this happens over different large areas of my body, anywhere really. It's a brilliant suggestion of yours to see if I can get on a cancellation list, first thing Monday morning I shall be on the phone! Thanks again the suggestion, Hugs to you to!

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