Sleep or not to Sleep that is the Question

Ive had Rheumatoid Arthritis for 8 years now, tried as many of the drugs as i could and failed. Im now taking Etanercept anti tnf, tramadols, co dydromols, amytryptyline and more. Feel like i rattle lol. Anyway my biggest issue at the moment is lack of sleep at night. When i do nod off the pain wakes me up not long after, tossing and turning, head wont go to sleep, pain shifting round the body. Yet 3.30pm in the afternoon im struggling to stay awake. Ive tried the exercise, the bath, the chill out , the music, sometimes they work sometimes they dont no one day or night is the same. Constantly feeling fatigued is kinda starting to get to me..... Others dont understand how quick we can get tired and how this can then effect everything its really surprising what makes us tired mentally and physically drained. Finding a solution is not the easiest though but i wont give up.

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  • Hi, this is one of the most common things with RA it appears to affect us all. I really don't think that there is any set procedure for this what works for some doesn't work for others and so on, a bit like the drugs themselves!

    You seem to have tried most things that I would have recommended, the main thing is that your catching up with sleep on the afternoon or when you can, I know this is not really ideal but it's sometimes the only solution.

    Nice to know you have a positive attitude to RA by not giving up!

    You do seem to be on a cocktail of painkillers sometimes they can react against each other, I always found Tramadol kept me awake at night sort of put me on a high but I could never sleep!

    It's one of the hardest part's of RA, the fatigue and feeling constantly tired with no energy, and your right it does make you feel mentally and physically drained. Might be worth having another chat with your consultant but I presume you have already done that. Keep on trying though you will eventually find what suits you.

    Take care and good luck

    Mandy xx

  • could it be the mix of meds that is preventing you from getting better sleep, as in the side effects?

    philip (L)

  • Hi Viz

    I found this really hard. I suffer from fatigue and feeling tired, so I can sleep for england, when it is bad, but every now and then I can times when I can;t sleep. Like Now. I have been awake since quarter to 4 and up since 5. For me, i think it is something I just have to live with. I am dead against taking any more tabs than I have to. I am on 20 mg Mtx and co-dydramol, paracetamol and ibrprofen when I have to. Well that's just for the OA and RA. I take another two for other conditions, but also Omeprazole to protect my tummy.

    I find the biggest help is gentle exercise and relaxation techniques. Ask your OT or nurse for some recommendations/ideas. My mind was always 20 miles a minute, but I am learning (albeit slowly) to mentally slow down.... it's hard.

    Good luck

    Julie xx

  • Dear viz,

    I too often have tis problem. pain.. affects sleep.. pain .. tiredness viscious circle.. sometime I get up top with pain killers.. or my new little friend bottle of oramorph..(mls not whole bottle!)

    some times I play cd of running water, waves etc.. but as you say severe ra pain can awake you any time from 2am onwards

    At the risk of over medicating every one! have a chat with gp.

    Sometimes they will give you a small supply of diazepam.. useful for muscle pain also!, or a small supply of the lower strength less addictive sleeping tablets such as zopiclone or zolpidem.. I must stress that I use these in only in emergency situations not as routine.. gp can be a bit sniffy about prescribing these , but they know I will be sensible and they can track how far im making them last between visits

    eg I was prescribed 28 zopiclone 3.75mg on 18.3.11 and I have 3 left today is 24.7.11 so that isnt bad going and shows that they arent over used,, gps always worry about dependance on diazepam and zopiclone

  • I have also had big problems sleeping. I now take amytriptyline (10 - 20 mg mg) at 7.30 pm and Temazepam (10 mg) at 10 pm. I then sleep quite well.

    As well as this: I have to AVOID (as they keep me awake) - anything like tramadol, co- anything as they contain codeine - after 4 pm and ibuprofen and volterol (antiinflamatories) after 6 pm!

    So it may well be taking the pain killers in the evening are keeping you awake, like they would me. Amytriptyline is also a good pain killer (especially for nerve pain). I would take paracetamol in the evening without any problem. If you ever need to take steriods - take them in the morning too - and if you have an steriod infusion or injection, bear in mind you are likely to be awake most of that night!! (I was awake the whole of the night last Friday after one... so had a good book and finally fell asleep for 2 hours at 6 am!! Amazingly enough I was fine the next day.

    If necessary I keep myself awake during the afternoons with black coffee or coke - as if I fall asleep then - I dont sleep at all at night.

    Hope that helps a bit.

  • Hello

    You might find the book: Good nights sleep, a drug free solution by Jan Sadler.

    The book includes a CD to help you.

    Another book is: Pain relief without drugs also by Jan Sadler.

    You will probably find them cheeper on amazon.

    Jan Sadler as her own site at:

    painsupport.co.uk/

    I have found both of these books very useful, especially the CD's.

    I hope that this is useful for you.

    David

  • Hey ....I feel your pain so much- the sleeping thing is a nightmare! When I came out of hospital in september it was a nightmare trying to catch up with the month of school missed without any sleep. I spoke to my RA doctor about it and was given amytriptyline which seemed to work ok. I think one of the best things is to get into a good bedtime routine...I used to get into bed and have a half an hour chat with my bf then go to sleep. Also go to bed with a positive attitude- telling yourself that you will sleep tonight. I also selected a night time film ( for me it was Pride and Prejudice with Keira Knightley) so if I woke up I just put it on and made myself more tired by concentrating on that and normally drifted off. My body became used to hearing it at sleepy time so I found it quite soothing although my doctor advised me against putting the tv or anything on but everybody is different so just try different things that work for you. You will get there in the end :)! When your body goes into sleep mode just try and make the most of it so you have more spare energy when it decides to misbehave again! Xx

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