NRAS
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So exhausted but don’t want to go to bed!

Anyone else? As I say I am so exhausted but track record suggests no sleep and pain so really reluctant to get to bed! Sorry to be so negative but it is a long long night with pain and no sleep.

B*****r you RA! - but still hopeful Rituximab will kick in in the next few weeks - such a long journey waiting for a lovely destination!

x

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I go to bed early every night not really to sleep but to rest, I take Melatonin to help me sleep and i get six hours sleep most nights of the week,it doesn't make much difference to my pain,but at least i sleep some if nothing else.xxxx

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Howdy. I have sleep issues, however I think it's really important to stick to a bedtime routine. I go to bed around 9PM. I stick to a rigid routine where sleep is concerned, otherwise things just escalate.

I walk dog round the block at 9...just a quick pee job. Come home, brush teeth etc, drink glass water switch everything off, and climb into a warmed up bed (electric blanket). I sleep in a very dark room, with Windows slightly open no matter the weather.

Sometimes I read for ten minutes, sometimes listen to radio three. Then lights off. If I wake in night I use loo, take some paracetamol then go back to bed.

I find having a strict routine has been hugely helpful. Before, I used to stay up, watch TV, or faff about on computer. This wasn't helping my already wired brain to switch off

So if it were me, I'd go to bed regardless.

I hope you will be pain free very soon.

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Sylvi and Nettac have given you very sensible replies! I just want to say, I totally understand your situation. I also am sometimes reluctant to go to bed at night when I know I'll be uncomfortable and in pain (shoulders! hips) while I try to fall asleep, and then much worse in the morning. I know tiredness will make things worse in the long term, but I don't always have it in me to be sensible and disciplined...

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Sleep! Aaargh! I would love to just get into bed and sleep til morning! No matter how tired I am I often can't get to sleep, or wake up after 3 hours, then toss and turn for up to 2 hours after. Is this your first Rituximab? I've been on it for 9 years now. It does help with the pain etc but sleep not so much. I'm not very disciplined either. X

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I tend to go to bed early especially on night before work. I Need to take sleeping tablets. Otherwise I will just lay awake all night even though I'm tired and need sleep.

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Thanks everyone.

I am quite good and do stick to a routine and go to bed at just about the same time each night. And once it’s bed time it is bed time - no screens, no tv, no getting up except for a pee if I need one we have always had bedtime rules with us and kids but it is just the thought of going to bed when I am fairly sure it won’t be a nice comfortable nights sleep it’s just a bit disheartening to head to bed with no confidence of sleep!

priss58 yes first Ritixumab (had both infusions) so fingers crossed it will work I am hopeful it will.

😃

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Hi. I hope it's good for you. You may feel the 'ritiximab hangover' though! Good luck!

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“Rituximab hangover“? Not heard of that - could you enlighten me please?

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Haha, yes. Headache, tired, needing to drink fizzy stuff and comfort eat. But maybe that's just me, not everyone gets it. By comfort eat, I mean chocolate and biscuits, or a mixture of both :)

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