Sleep, lack of

Hi all, used to be that I just plain slept badly but in recent months the pattern has been 3 or 4 bad nights followed by a couple of good ones. Increasingly the reason for poor sleep is a frequent need to pee. And now after 6 rubbish nights on the trot I'm fed up.

I do not drink anything for 3 or more hours before bed time but I still need to empty my bladder frequently, sometimes as often as 9 or 10 times! And these cold nights that is very grumpy-making! Sometimes I find that a glass of wine actually helps the situation, but not always.

I know that anyone who responds is likely to tell me to see the doc & indeed I will. But I don't think I'm about to fall off my perch because of this so I want to try a few things first - but what? I've already reduced the amount of tea I drink during the day & the advice I've seen online suggests that avoiding fluids for just 2 hours before bed should be enough & I go much longer than that without a drink.

I did mention it to my GP once on the phone while she was busy emphasisng for the umpteenth time that the hospital must look after all my RA-related issues (I hardly ever see a GP - she is terrified that I might prove expensive - why? Is it because Biologics might be on the cards, thought the hospital paid for that?) & she said it was nothing to do with mtx.

If I'm rambling please forgive me, I am knackered.

Luce x

24 Replies

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  • Hi Luce,

    Well if its any consolation I am having the same! I am putting it down to the room temperature dropping during the night and wakening me, so off to the loo! But I left the heating on and slept a bit better. But of course it could be all sorts of medical stuff from infections to starting diabetes so as you say well worth a check up! Also we get blood tests to check liver and kidney function so maybe she has a point in asking Rheumies to check that out ( although mine would just say see ur GP and it would go round in circles lol)

    Hope u get sorted soon though it gets too tiring to ignore after a while xxxxxxx

  • Thanks, comforting to hear I'm not the only one but sorry that you are traipsing back & forth too. Actually GP did say that I needed to see her if the nocturnal peeing continued but then she was back on her hobby horse straight away. I'd only phoned up to ask her to extend a prescription, which is the protocol! I find it quite funny.

  • I Havent much sleep either ( pain!) not pee!. -you have every right to see a gp. my rheum and rheum referred me to a urologist who i saw lasr friday had blood (dipstick) in urine for around a year.

    yours maybe an inection, hormone or med related go to gp get it checked there is a think called overactive/ irritable bladder too for which there are meds . Dont feel guilty about biologics and cost we didnt ask for this disease.

    plenty of nhs money gets spent on obesity surgery and sex change ops cant see that we are less deserving x

  • Thanks Summer. I'd rather pee than pain, you've had a lot of pain to contend with recently, I know.

    I don't usually feel guilty about meds, I take what I need if it's available. But I think the NHS wastes money too, not that I'm against the surgery you mention, just worried our culture encourages us to resort to snip & slice a bit too readily & that's not always the best for the people concerned or the NHS coffers.

    I'm giving it one more day of limited caffeine & as much fresh air as I can face then make an appt. tomorrow if still the same.

  • Here is a different slant on your problem have you thought about sleep apnea. I am going through the process now and it appears that that is what i have. I have to go back and get a machine to use during the night and take it back the next day and then i will have another appt to see the results and see what they will do next. I always pee when i wake up anyway. As summer has said they spend the money on obesity and despite being obese myself i still don't think the money should be spent there when ra is sooo more deserving of said money.xxx

  • Thanks Sylvi, you have made me consider this now. I guess how it works is that you wake frequently because of the apnea & then are more likely to go for a pee? I saw a mention of it online & dismissed it because I don't snore & I thought snoring and sleep apnea went together. Maybe not, I'll ask the doctor.

    My husband however does snore like a warthog & if alcohol is involved he goes ages apparently without breathing. But he's listening to me about this now, drinking much more moderately & it's not happened lately. (It's not him keeping me awake though - I dispatch him to the spare room most nights.)

    I'm not against spending money to tackle obesity per se but these gastric bands seem to be a bit of a fad at the moment & I can't help thinking there must be something a bit cleverer they could do that's not so drastic & perhaps not so expensive.

  • cranberry juice.... if not taking warfarin ps im overweight too lol x

  • Right I'm getting some of that! I'm not particularly overweight but I had a good friend who'd had a sex change. Lost touch with her now sadly. It's a hard thing to understand but all I know is that she was a most level-headed & bright person & there's no way she'd have gone through all that had she not been desperate. I loved the way she kept up all the stuff she'd done as a man rather than trying to be ultra-girly. She went sailing & build her own boats (& was rather beautiful.) But very sensitive about it, if she were to read this I'd be for it!

  • I think that you need to go to the GP asap to check that you have not picked up an infection, which can happen to anyone. As for lack of sleep I can only sympathize with you as I have been taken off all drugs for the past month while I wait for Nice to make up their mind!

  • Waiting on Biologics I presume. I don't think it's an infection as my pee isn't any different from usual & I'm okay through the day. (Or am I? Sometimes I have to really think to be sure what's what - maybe that comes from trying to ignore niggly things ordinarily.) But I will see GP if tonight is no better & you make me think I should take a sample along if so. Hope NICE get their flipping act together soon.

  • I have a few days after my Metho injection and humira where I need to pee during the day much more and during the night too. Must be my body working the kidneys a bit more. Ive been waking regularly during the night for a visit this week too and you have got me thinking..... do I wake with pain then realise I need to go to the loo or is it the other way round???? I am shattered this week at work as a result fighting this flare and lack of sleep!!!Any hints advice welcome too! Good to hear I am not alone in my nightly loo visits!!! xx

  • Yes I looked it up under side effects of mtx but there was no mention. But I do agree that surely the kidneys are a bit busier with this toxic stuff? Summer mentioned irritable bladder & I just wonder whether the spicy food I eat - lots of chilli - might play a part. My son has been staying recently & we did cook even more curries food than usual while he was here. But I think I'm grasping at straws.

    Hope you sleep much better tonight.

  • Hi Luce. Interesting question this for me. I have had wakeful nights for many years and peeing definitely comes into the picture a lot. I have got a family history of diabetes 2 so I have annual tests but last time my blood glucose level was normal thankfully. I think it's just a habit that formed while I was pregnant and it's just stayed but I've always suffered from insomnia. I find that when I take Amitriptyline, which is also used for kids with bedwetting problems because it helps lessen the pee urge - it really does help although it also wipes me out the next day even if I take it early on the previous night.

    The reason I think that it's funny you should mention this is because my husband has a really big problem with snoring. The whole thing about sleep apnea just raised it's head for us when he started talking about it this afternoon - and has at last made an appointment to see the GP about it on Thursday. Getting men to see GPs isn't easy - do others find this? Anyhow he was prompted to do this by a male colleague at work who told him that he'd been assessed down in Aberdeen at a sleep apnea clinic (he does have a heart condition too mind) and they had referred him to the dentist here where he'd had a special NHS brace made. My OH has done lots of research recently because we haven't been able to spend a night together for many months now and it's upsetting him. I just end up lying there listening to his unbelievably loud snores and wondering how healthy this is for him - let alone for me.

    So lots of food for thought. I'm just prevaricating before injecting MTX now so thanks for furnishing me with some delaying material!

    I am quite lucky in a way that I have no one else to ask about RA related stuff than my GPs so the poor things get quizzed quite often but I try to ration it to once a month/ every 2 months when I have my blood tests with them sometimes. It doesn't usually get me very far though but I wouldn't say frequent micturation is a matter for a rheumatologist so it's your GP's job to address it 100%!

    Tilda x

  • PS I might be wrong about this but others on the site have mentioned that the GP surgeries usually have to foot the cost of Biologics and all other stuff even if it's arranged or advised by the Rheumatology department your local hospital. If I'm right about this then the GP is not going to save their practice any money by offloading you onto rheumatology I wouldn't have thought? TTx

  • Yeah I thought this too. Maybe they don't want me clogging up the waiting room in addition to the expense? Just been to see them though because I now have some pain low done in my abdomen & was amazed that the GP asked me to come along pronto, tested urine (no infection, no sugar) and then urged me to come back in a week for a pelvic examination if I still have problems as they 'need to look after me while I'm on mtx' (!!)

    Re the snoring, oh god tell me about it! It's a real nuisance isn't it & when my working life was considerably more stressful it was a particularly vexed issue. I just don't know how people cope if they have no room to sleep separately but being apart night after night is lonely, I know. My husband's sleep apnea and the really high volume snoring come to that, seem to be linked to excessive beer. I used to lie awake listening to him in the next room, counting the seconds when he went ominously silent before gasping for breath. So then I had to virtually nail him to his seat when anything about it was on the telly, patiently explain the possible link between sleep apnea & his daytime tiredness etc. etc. He's now limiting how much he drinks and the world class snoring and the sleep apnea seem to have gone which is just as well because he won't go to the GP - I think we've heard of the brace (shows how retentive my mind isn't!) but I'll mention it to him. It's great that your husband has taken the initiative, wonder what the GP will say.

    I too have always have been a bit of a nervy night time pee-er but this seems different, much more urgent & a whole lot of urine considering self-imposed evening beverage ban. Mind you, seems we are all at it!

    Luce x

  • Thanks Woolly, have a good nights sleep too and I hope it eases soon. I'll Say a wee hello to you at 2am, 3.30am and 4.45am!! xxx

  • Oh heck Luce I've just stabbed my MTX and feek sick already - how psychological am I?

    My OH doesn't drink much at all - he's got a very light frame and he just can't hack much booze but he does work nights and I'm sure that contributes to his dodgy sinuses (plus a huge nose!) and the poor love did get a brace online but it made his jaw ache horribly so he had to scrap it. It was one where you dip it in hot water and then stick it in your mouth so it molds to the right shape for your jaw. But having grown up in Africa where there was no regular dentistry his teeth are a really whacky shape and even the molded one caused him pain. They are called Snore Wizzards and if you have a regular shaped mouth they work well (well they worked well from my point of view anyway as the snoring almost ceased entirely).

    So now he's found out about a copper band which the dental people recommend but it costs over £1000 and you have to have it fitted by a registered dental practitioner (registered with the company that makes them) only. So for us this could end up at 2K or over and we are really rather skint just now - husband is a night careworker so not exactly flush. So he is hoping the GP might refer him to someone who may be able to address this properly. He's chosen the man GP who is our age because he thinks it is less embarassing but I've told him that he mustn't make me out to be some kind of evil harridan who kicks him out of bed at the first rumble - even though I am heh heh!

    Glad your GP is waking up to responsibilities at last and that's good news about the tests so far being clear. Perhaps it would be worth trying some Amitriptyline if you have got some or could get them to prescribe one? It does just settle me down well and if you haven't got to get to work the next day then it would be fine. I have to go to popmobility class now and I'm trying to resist my mental prevarications. I have to be up at dawn tomorrow for a whole day's worth of meetings followed by giving a talk about our work at the local arts centre. Buurrrrhhhh! TTx

  • Frequent peeling at night could be worth getting blood sugar levels tested. I find it varies a lot with what I eat for evening meal. Strawberries make me pee a lot

  • Thanks Cathie, I did go to doc yesterday evening in the end as was starting to get pain low in abdomen. She tested my urine for sugar & found none. I am actually coming round to the idea that my bladder might just be irritated by certain foods. Thanks for giving me an excuse to buy some strawberries in the spirit of inquiry! Although January strawberries probably taste of fresh air ...

    I read that the brain / hormones switch off the bladder somehow at night but that this mechanism quite often goes awry in the over-50s. What doesn't, I wonder?

  • If it helps at all i had this problem but its much better recently. Cant say ive done much apart from duabetes under control. Glad thats not a worry for you

  • Yes i think it is one that comes & goes. I'm even wondering about swimming pool chemicals now as have been swimming a little more than usual recently as walking has been no go. Slept quite well last night for which I am thankful but a consistent picture is easier to present to doctors!

  • It must be difficult for GPs to work out what they are supposed to be responsible for when you have this "shared care" with the hospital.

    If it's clearly not related to the RA that's obvious, but so many things can be side effects from taking the medications, or from the RA itself - when are they supposed to take the lead and when the hospital ?

    I often find that I'm falling between the two systems - I ring the Rheumy nurse and she says see your GP. I see the GP and she asks what the rheumy people said. They don't seem concerned about the money side of it - just confused about who is responsible for what.

  • I should not really complain Oldtimer as they have not actually played ping-pong with me yet! The GPs just have a chequered history with me in terms of being any use whatsoever but I must say that they have been extremely helpful & pleasant recently. It was almost as if they were exasperated in the early days by another patient succumbing to an expensive chronic condition, that's how it seemed anyway & where I live there is an ageing population I think so perhaps they just have an expensive clientele! When I was on the phone to one doc she was reading through a letter from my Rheumy and actually let out a little, quickly-stifled scream when she got to the bit that mentioned the likelihood of Biologics!!

    But I definitely take your point. It must be confusing for them.

  • mmm screaming is what my health authority are doing too?!! or rather trying to avoid the screaming process , drug wise they day the only other thing they can try is penicllamine .. antique drug worse than any of the over old ones.. just failed on gold after sixteen months !!

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