I just need some sleep!!!: I seem to have forgotten... - NRAS


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I just need some sleep!!!

I seem to have forgotten what a good night's sleep is. Impossible without strong painkillers to zonk me out totally which makes me feel like hell in the mornings and leave me thinking that dementia is setting in as head will not function at all. Alongside this, there is the blasted stiffness just about everywhere and in places where I thought it would be impossible to get stiff, and the all over pain. I tend to set the alarm an hour earlier than needed so that I have enough time to 'move'!!!!! The house resounds to my 'ohs', 'ouches' and use of various words which are unprintable here.

How do you all cope with lack of sleep? It seems to me to be a vicious circle; no sleep equals more pain and stiffness. I have a methotrexate injection every week, and had my last Humira two weeks ago. This is now stopping because it doesn't seem to be helping and I'm having my first rituximab infusion on Friday. Steroids helped the physical symptoms of RA but made me rather depressed so they have been stopped. Being in bed tends to aggravate the situation rather than alleviating it - so does sitting as I usually need a shove from behind to get my hips to move.

Just can't win against this noxious disease!!!

Cheers Everyone and keep smiling (if possible).

13 Replies

Is it possible to get out and do some exercise (assuming you aren't already). I know this can be difficult, I know the days are getting chillier and the nights are drawing in but ....... exercise can really, really help with inflammatory arthritis. It's not a quick fix - yes, after a walk, however slow, you are likely to feel a bit less stiff and rightly pleased with yourself, but it's regular, frequent exercise that makes the biggest difference. If you can get 'hooked' on some form of exercise that can be the best way .... hooked enough that you start getting antsy if you don't get your walk or your swim or whatever. That way you don't need so much willpower.

Movement and fresh air are great ways to improve sleep and reduce pain over time. I've started to see the regular exercise I do as every bit as important as Mtx and Humira.

in reply to

The highlight of my day is to go walking with my dog. We amble through the local woods and countryside quite happily in all weathers. I do realise that I can't climb the stiles as easily as I could before, but somehow we get there. Hills and slopes take a bit longer as my legs tend to grind to a standstill and need willpower to push them forward, but I love being outdoors - am a keen gardener, but moving paving slabs is not for me anymore!!!

allanah profile image
allanah in reply to

Then also try lavender on your pillow, a bodycushion( you can get from internet) that Isas long as your body or double up a duvet and sleep with it below you and another light one on to.

If you get hot put your pillow cases in the fridge before You go to bed and my last tip was actually given to me by my rhey nurse, Nytol herbal tablets from the chemist ( obviously check with the chemist if you want to try that as we will be on different medications ) hope that helps a little , it's do awful, hate it when I get insomnia x

Thank you allanah. I had wondered about Nytol and meant to mention it to my RA nurse when I saw her but my foggy brain missed that bit out. I had discussed this with my GP who gave me amitriptyline which didn't help just made me very fidgety and restless which seemed to defeat the object somehow.

I too suffered with really bad insomnia & was stuck trying to think of ways to get a good night's sleep - a must 4 any1 not just those of us with RA/inflammatory arthritis! It just seemed like no matter how hard I tried to flip my brain's gear into a 'sleep mode',the 'switch' always seemed to be broken somehow,I tried all the usual suggestions e.g : - warm milky drinks before going to bed,reading in bed,listening to music,(even whalesong as suggested by 1 gp) & of course counting sheep& with me being Welsh you'd think that 1 would work,but even after counting them n giving them names my 'sleep - switch' remained faulty.

I went back to my G.P,who fair play always does his best n if I go to him with an RA relevant question will do his research before making a decision about meds. Anyway after some trial & error & many more nights without adequate sleep, we arrived at a drug called Mirtazapine 45mg before bed. Hey presto,my 'sleep - switch' was repaired & my sleep patterns restored - I do have a little warning,they are quite fast acting or at least I find them so - so if you want to get the best out of them take them as late as 1/2 an hour before you go to bed otherwise you find yourself waking up stiff & cold in your armchair or on your settee at 'silly o'clock' in the morning. My other meds at the mo include Mtx,300mg of MST (-a morphine tab) for slo - release pain control + 10mg of Sevredol (morphine again!) for breakthrough pain when needed like before trying to get out of bed in the morning!

Fuzzy headed I might be throughout the day with all that morphine - but at least I'm sleeping well again! - Also,if you feel your gp isn't particularly knowledgable about our conditions it might be worth asking if any other gp in your practice has an interest in this type of disease,illness,condition. If there isn't one there it might be worth scoping out other surgeries close to your location that may have a gp based there that has an interest in inflammatory diseases. I hope that may help - please let us know how you get on.

Pob lwc/good luck!


Mirtazipine is an antidepressant like Amitriptyline but is not suitable for people with low mood. I take amitrip and wouldn't sleep without it but it makes me mouth very dry ( I take 10mg) and I get things stuck in my throat. Hopefully Rituximab will work much better for you than Humira and your stiffness will subside. Are you having the IV Steroid pre med with your Ritux?

Hiya Funnygran. I didn't have restful sleep until recently mostly due OA & CS though rather than my RD but that doesn't mean I don't understand how hellish if can be if it becomes prolonged & really feel for you. I've now hopefully got back into a regular sleeping pattern since my Rheumy requested my GP perform a full pain med review. I now have a regular 25mg amitriptyline & 10mcg BuTrans patches & I'm sleeping pretty much through the night now, amitriptyline in my case is being used as a relaxant rather than its original use as an antidepressant. As Kikideelili says these types of meds don't suit everyone but for me they certainly help me cope better. My problem is my RD needs to be exercised but the OA resists. Conversely the OA grumbles if I sit too long but my RD at times insists I rest so I have to try & appease them both.

I think it's finding a happy medium, not too much exercise but not too little & if meds or professionally recommended over the counter sleep aids help you & don't affect your waking hours then happy days.

One thing I do know, for me anyway, restful sleep is precious & hope you can find a solution that gives you that.

HI Funnygran,

Sorry to hear you aren't getting that all important sleep. I hope some of the suggestions here will help and there's also our Sleep Hygiene and Fatigue publications if they are of any help to you. You can find them on our website at nras.org.uk/publications

Best wishes,

Ruth Grosart

NRAS Digital Media Coordinator & HU Admin

Sleeplessness is horribly familiar. Anyway, did you hear the discussion on Radio 4 Woman's Hour this morning? The main message of the sleep expert was not to worry about being awake. Someone suggested doing jigsaw but I dont think that'd work for me!

Oh yes and I was talking to my counsellor the other day and she said that a lot of people she knows listen to the radio especially spoken word. I've been doing this for years and have it on an iPod in my ear so quiet that I have to stay still to hear it. World Service goes on all night, and you can feel a sense of relief when it goes back to R4 at 5.20am. That's when I have my best couple of hours!

Thank you Everyone for taking the time to reply. I have made a note of everything mentioned and will see which one works. I'm seeing my RA specialist nurse at the beginning of December, so will discuss the medications with her. I have my first rituximab infusion on Friday, and the next one on 14th November. Yes, I will be having the IV steroid alongside it. When I am restless at night I tend to make myself tea and toast (share with the dog), empty the dishwasher and generally potter around the house. I feel exhausted but being in bed is just not comfortable! Having fibromyalgia as well as RA doesn't help and at times I'm just not sure which is causing the most probs. Fibro does get worse the less sleep one gets.

One other thing, I have now realised that most fruits affect my pain and stiffness levels, which leaves just apples, pears, cherries and bananas, so to ring the changes I have 'invented' apple and beetroot crumble (beetroot cooked and chopped small), which believe it or not is rather pleasant, especially with custard. The rest of the family won't touch it though.

Once again - thanks for your help. When I read each post I can picture each one of you in my mind doing exactly the things you have advised - very comforting.

Funnygran x

all valuable advices.thanks to all.

smile is the ready tonic for all.

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