Wide awake!

Why can I not sleep? It's 3.40 a.m. and I've been wide awake for about 2 hrs....so have decided to come downstairs ....again! My other half can't sleep with the radio on our the lif light on. If he's not there I would put radio 4 on sleep: I concentrate on every word said and it bores me to sleep...our I'd read my book our kindle.

But it's more the fact that I seem to have had enough sleep...Why???


22 Replies

  • That was me on Thursday. I spent the night in a chair listening to Classic FM. Spoke to my Rheummy nurse, I think they are going to increase my folic acid to try and help. Find out on Thursday. I hope it all gets better for you. Got to go and get dressed, bus awaits.

  • This is me most nights! I take 5mg folic acid 3 days after mix. At the moment I'm slipping mtx forward a day at a time to move it to the middle of the week. Was Friday first 2 weeks then Saturday and this week Sunday. I've decided that if I'm going to be a bit tired and washed out and have been told by rheumy Dr not to have any alcohol day before, on or after mtx, that I'd rather work to live than live to work. Maybe I'll mention it to clinical nurse Monday- thanks😴

  • Do remember no alcohol the day before you have your drug monitoring blood test, it could skew your liver scores (Alk phos, ALT/AST). Your b12 might be too low as you're only taking folic acid the one day so you might want to ask if you could increase it. Ideas vary between each, my Consultant recommended the day before & the day after but my current one says every day except MTX day.

    I inject on Wednesdays then I know I'm tip top for the weekend.

    Do all you can to rest after dinner, let your body wind down, low lighting, read rather than watch TV, try relaxation methods that may help, if you're partner's willing massage can help. You need proper restorative sleep otherwise your whole day's a struggle... says her that just pops amitriptyline!

  • Hi, I'm still not used to all the blood test results and what they indicate- I have, however, asked my doctor to check my b12 and cholesterol - so I'm getting those done alongside my 4wks blood test which I'm having done 8/2. I haven't had a drink since new year's eve as I want to see that my body is coping with everything first! But as a lot of people are doing dry January it's not so bad. As for a massage, my poor long suffering partner can't get anywhere near me atm- I'm sore to touch everywhere! I'm presuming it's referred pain from the swelling 😕Amitriptyline is the drug which I have a prescription for...I'm in bed atm- feeling washed out- no energy 😩I'm going to ring the clinical nurse at the hospital Monday because I want to ask about some odd small bruises appearing so I'll ask about having extra folic acid- thanks

  • You will, everybody was in the same position (unless worked in the medical profession or like me worked under doctors but even then it's a learning curve!).

    Depending on your results your GP may suggest annual tests for cholesterol, vitamins etc.

    You're wise to hold off alcohol whilst newly diagnosed to see how your liver reacts. I've been diagnosed 8 years & don't drink at all but still I can have the odd higher than norm result. My Consultant in Spain used to look over his glasses in a quizzical way, I don't think he believed me!

    Your partner understands why you're sore doesn't he? Do explain if not, & it won't be forever, it can open up a whole new relationship!

    Ami is an excellent relaxant for many but even if you decided to take it I'd check with your Rheumy or GP first, things have moved on since it was prescribed for you & you're taking meds now. Or, ask your nurse what she'd recommend, she may have some good relaxation techniques. I get why you're in bed, that feeling that anything is too much effort is horrible, but something to be aware of is the more you sleep during the day the less you'll sleep at night. I got into that habit & made things worse. I now lie on the bed about an hour after lunch & may fall asleep but my h sends our other dog to wake me up in an hour (our other dog comes for a snuggle with me).

    Take care. x

  • I had a night like that the night before last night,try not to worry too much if you have a night with no sleep as the more you worry the worse the problem gets.xxxx

  • Even though it's early days for me and I'm still off work, I'm not generally a person who worries too much. I just seem to be wide awake- very strange. I am getting through my teenage daughter's books at the rate of knots lol. Have read some good books though😀

  • Have you had a steroid injection lately cos they have me zinging awake.


  • Morning😀

    I've had a few since late December: 1 on 18/12 , then 2 7/1 and 2 22/1 (dates approx) I also had a week on prednisolone orally, around the 14/1.... but they don't seem to relieve the pain 😕

  • Hi. I have been like that for a long time. I get off to sleep ok but wake at 2 or 3 o'clock and can't get back to sleep. I am a crafter and am at my most creative in the middle of the night (not good.) I try the 20 minute rule and it does work some of the time. Worth a try. When you wake up don't lie there for longer than 20 minutes. Get up and walk around or go and make a hot drink then when you have done that go back to bed and do whatever you do normally when you first go to bed e.g. read. Apparently it fools your body into thinking you have just gone to bed for the first time. It doesn't always work but it has worked on several occasions for me. I would be interested to see if it works for you. Good luck.

  • Hi sheila, into am a crafter and find myself wide awake doing crafts in the middle of the night well when the whole swollen fingers,achy wrists isn't to bad, I've only been diagnosed six months but gota admit I'm finding certain things hard, craft wise sorry to go off topic but you are the first crafter I've seen on here,used to love colouring but that's getting harder,oh well , I find myself watching create and craft in the early hours,even though I'm on amitryptline (think I've spelt it wrong)

  • That sounds like a plan😀

    I do get up and make a drink- which wakes the dog, who bothers the cat, and try to creep back to bed- then I wake my other half who grumbles and groans, who then thinks I've gone off him because by now I've crept back downstairs to start all over again lol 😇😴

  • You've only just started on meds, and they can upset your natural rhythms. But it usually wears off after a while. You need your sleep!

  • I do need my sleep...I agree! I remember when I first started to see the local gp, he gave me a prescription for a sleeping tablet ( before I went to see Rheumy Dr) I still haven't cashed that in....I'm so reluctant to take anything more.😕

  • Probably best to try without if you can. Do all the usually things first, calming bedtime routines, no food or alcohol before hand, a bit of fresh air early evening etc etc.

  • Alcohol? I've forgotten what that is!😥 But you're right....and I do all of the above. I have a dog who needs walking so that is a must and I try to not eat between dinner at 6 and have a late breakfast- I find that helps my metabolism stay in shape.😀

  • When I was first diagnosed with GPA and on 60mg Prednisolone I had the same sleep problems. I'm sure most if not all of us do when we are on steroids. I was already a pretty rubbish sleeper without the added bonus of steroids. I used this website to see me through it: sleepstation.org.uk and it helped enormously. It was tough but I became less anxious about sleep and having just recently stopped Pred my sleep without steroids is better than it was before I became ill. That's probably a combination of the fatigue from GPA and better strategies for managing sleep learned from Sleepstation.org. I recommend it if you want to get through the steroids and stay sane or manage to keep working.

  • Thanks- I'll check that out😀

  • Hmmm...sleepstation is a paid for service....I'm not sure I'll entertain that, but thanks 😀

  • I've just looked at that too and I maybe haven't fount the right place but it seems to be all pills - I was expecting tips and his.

    If you have catch up TV look at Trust Me I'm a Doctor, they looked at sleep this week, the were in a retirement village and gave the people who lived there various things to try.

  • I've also always been a rubbish sleeper and am really trying to take it in hand - going to bed before I drift off on the sofa, no i pad in the evening, the 20 minute rule etc but I just wanted to mention one thing that has made a difference to me in the wee small hours and that is a paper white kindle. It's light is so low it doesn't disturb any one else in the room. You don't have to get up immediately which can waken you up even more and, if you do get back to sleep reading, it switches itself off which leaves the room in darkness. I don't really understand it, but the way it is lit up is different from a computer so doesn't affect sleep in the same way. I use a mini bean bag (tech bed) to hold it as my hands get sore holding things for any length of time.

  • I have a tiny iPod which doesn't do much but has a radio. I can listen through the earbuds without disturbing anyone.

    I've been suffering chronic insomnia too for ages

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