Difficulty sleeping

[Summerrain14]

For the last couple of months I am really struggling to sleep which is really impacting on my emotional health too. Initially my difficulty sleeping was thought to be due to my low vitamin D levels which I have been treated for. Having a flare up at the moment and was given a steroid injection last week which is helping reduce my inflammation and pain now. However I am only achieving around 3-4 hours sleep a night. I can fall asleep quickly enough but then am wide awake for hours within an hour and a half. Really poor sleep is really taking it’s toll for me. Has anyone experienced anything similar and any advice for getting a better nights sleep. I will talk again with my rheumy nurse when she calls me next week.

[Mmrr]

I often have 'two sleeps'.

I go to bed fall asleep and wake around 1 and half- 2 hrs later.

I usually get up, have a cup of tea, read or sit and do nothing. I often take 2 paracetamol, probably placebo effect. Then go back to bed after an hour or so, and fall asleep again.

I find if I go to bed earlier I tend to sleep better too.

I try not to worry about being awake in the middle of the night now ( I don't work).

When the RD is better controlled I sleep better too.

[Summerrain14 in reply to Mmrr]

Maybe I need to try the two sleeps approach. I am currently still working at the moment and trying to function on such little sleep is a real challenge. I have a job where I am discussing support and services with people all day with a drop in service so never know how many people I may see in the day. I am aware that my mood is low but have to do my best not to let this show. My manager does know about my RA and that I am struggling to sleep but with my job seeing people daily there is no flexibility available.

If I do my usual of wide awake after around an hour and a half I’ll keep up for a bit and then try to come back to bed. Thanks for the tips.

[Oshgosh in reply to Mmrr]

This is very good advice,when I. Ouldnt sleep,this is what I used to do.

[Buckybri]

I take two amatryptline before I go to bed and it helps me stay asleep . I like u went to sleep easy but kept waking up

[springcross]

Hi Summerrain14. I used to get a lot of that and still get it occasionally. I have found that if my body is not at the correct temperature, it keeps me awake. I keep a light blanket on top of the bedclothes in the middle of the bed and if I can't sleep, I pull it over me and usually, within a short time I have gone off to sleep. It might sound daft, but it certainly works for me.

[Summerrain14 in reply to springcross]

My temperature seems to be all over the place right now. Been cold to the bone since Monday but having hot flushes this morning.

[allanah]

Yes unfortunately particularly after steroids as I then am " buzzing" . I go to bed zone our then wake . So I now come downstairs ( if I lie in bed I get more sore). Have a drink and painkillers then go back up to sleep. Works for me. But then it settles for a bit and I sleep through xx

[Summerrain14 in reply to allanah]

It is driving me a little crackers now. I did manage nearly five hours sleep last night though. xx

[allanah in reply to Summerrain14]

It so does...I was awake again last night but think I might be getting a urine infection which is unusual for me, off to pharmacy now with my eyes down my face lol

[Hidden]

Yes I wake several times a night usually because I’m so hot . I sleep with the window open no heating in the bedroom. My hubby is frozen. Last night I sweated so much when I stood up I had rivers of sweat running down my body. When my RA is more controlled I sleep better.

[jbzm in reply to Hidden]

Glad it's just not me. I don't get any hot flushes in the day time but night . . . WOW! I've been told it's probably the perimenopause but it's not all the time. MTX seems to drive it somewhat (I had three weeks off it recently and things did calm). I have Reynauds so usually sleep with socks on, even in the height of summer but end up taking them off as soon as I tuck down at the moment. Even rolling over can set me off.

If we listed all the 'odd' things our bodies are doing I'm sure no one would believe us!

My poor husband is also freezing after years of sweating because I was too cold. Bless him.

[Mmrr in reply to jbzm]

Yip

[Hidden in reply to jbzm]

We just can’t win🙄🙄 I blamed the perimenapause then the menopause it’s not those anymore . I’ve been on a biologic for 5 weeks and noticed I was getting less hot and sleeping better at night... got a chest infection 2 weeks ago now going into my 3rd week with no meds . BOY DO I NOTICE A DIFFERENCE.

[Mmrr in reply to Hidden]

I can identify with what you say !

[jbzm in reply to Mmrr]

Ho hum. At least with the present storms we can't complain about being cold!

You'd think someone could come up with a way to harness all this excess heat we are producing, I'm sure I could reduce our energy bills . ..

[Hidden in reply to jbzm]

😂😂😂the grid would owe me money

[jbzm in reply to Hidden]

See the reply to Mmrr . . .

[Mmrr in reply to jbzm]

I am always wary that visitors to my house might be cold, as I'm very hot and only have a minimal amount of background heating on. I tend to turn the heating up when people come, but then need to strip off or I am so uncomfortable 🔥🔥🔥

Except for my feet, as I have Raynaulds and they get very cold, so I have 2 pairs of socks and slipper boots on. What a lovely sight.

[jbzm in reply to Mmrr]

This had better be my last reply, I'm aware it's not where the original post was headed (still new to this so not sure of the etiquette!) but it's been good to have some silliness today.

Husband finally gave in and saw the GP yesterday and started on anti- depressants today. Just not coping with the various diagnoses I've had over the last three years. Whilst the RA (diagnosed Nov 2018 but I know of a flare in Dec 2016) is uncomfortable (bit of a stoic, still can't even wring out a dishcloth or fill a kettle for one without wincing on a good day, just can't do them on a bad one), it's not 'life threatening', that sounds melodramatic but the Adrenal Insufficiency (read up on Addisonian Crisis to get an idea) can be without correct, prompt treatment. The Endo has made it clear I'm lucky to be here after three blue light admissions where they had no diagnosis. That was diagnosed in Dec 2016. Since then the thyroid has gone in to decline and the long-standing lung problems have become more complicated. Hubby is worried about now and worried for our future . . . and generally worried . . .

Our 17 yr old (A levels this year) is struggling with his mental health, I get the usual lows associated with all that's going on and I also need to support my mum. Too much has happened there in the last 18 months to go in to here.

So, thank you Mmrr and J1707, I needed the light relief.

As to the two pairs of socks and slippers - yep, that's my default although I try forone pair of socks in the summer. That's why NO socks at night it sooooo weird!

Have a good day.

[Hidden in reply to jbzm]

Humour gets me through the most dire of situations. I had a teenager who went through mental issues he’s now 27 come through the other side .. took a while but he got there. Now wants to work in mental health. I often feel guilty the effect my disease has on my husbands and sons life as it does impact on them.

Have a good day... I don’t give a stuff for etiquette sometimes conversations just evolve

[Gigi71]

Like Mmrr, I take a paracetamol, I use to take 2 when I went to bed, I have now cut it done to 1 and if I wake to go to the loo and can’t get off again, I take another. For some reason it works for me. X

[mjrminor]

Sleep has also been a real problem for me to the point that my partner and I are currently sleeping in separate beds to stop us from killing each other. Although I'd rather we didn't, it's actually helping because I don't have to worry about tossing and turning all night, and he's generally a poor sleeper anyway.

Some less extreme things I've found that help with sleep are, like others, taking paracetamol before bed, listening to a sleep meditation (you can get them as an app for your phone), and using an electric blanket to warm the bed and my joints. I also sleep with a pillow between my knees for extra support.

[RosieA]

I get periods of very intermmitent sleep and used to wake up with temperature all over the place, including sweats (although had very early menopause, so can't put it down to that). I tossed out my down duvet and have invested in an all natural wool duvet with linen bedding. What a difference - wool wicks and can absorb moisture (unlike feather /down), so I never, ever wake up sweating / drenched as I did before. The linen really helps the wool and our bodies to 'breath' regulating temperature wonderfully, keeps me warm when I need it and cool otherwise. It has been a transformation and added bonus it doesn't need ironing. Win, Win. I do so hope you find what works best for you soon, there is little as dibilitating as not sleeping well, it affects every aspect of our lives. All the best.

[Hidden in reply to RosieA]

I too use a wool duvet but I still sweat but not as bad. I have silk pillow cases ( oooo) they really do help... would love silk sheets ..... I girl can dream 😂

[achyknitter]

Apart from worry, there are three things that keep me from sleeping - achy joints, an increase in my asthma steroid inhaler and feeling cold. I keep the heating turned to 17 at night as this helps with the aches (surprisingly, it has not increased my gas bill by very much) but if I am still cold I use bed socks. Someone once recommended putting your feet in icy cold water just before you went to bed to ensure you slept warm but I have never been desperate enough to try this. Going to bed early helps me, as does playing a very well known audio book - I find myself listening to new stories. If this does not work, I get up and sit downstairs for half an hour with a sudoku and sometimes take a paracetamol. Poor sleep seems to be a part of RD. I never had a problem with sleep until I developed this but, for me, poor sleep is an integral part of every flare.

I hope you find something to help with your sleep.

[Maggsie]

I take a CBD (5mg) capsule about 8.30pm and go to bed about 10.30pm. I usually try to read for 15-30 mins to relax but I then mostly sleep through. If I'm really struggling with pain or restless legs etc. I take one amytriptilene although that does leave me dozy in the morning.

[Tre123]

I'm having a complete melt down for the past few weeks as I just can't sleep its ruining my life I feel. I feel tired in the evenings and then I get to bed and nothing! Sometimes still awake at 5 in the morning. Be tried everything. Roc prescribed amptrline as I have a bad neck so is meant to make me relax wen sleeping. Tried sleeping tableys. Exercise meditation u name it I've tried it. Please help as I totally y sympathise with anyone going through the same thing

[bubblyalex in reply to Tre123]

I sympathise and am in the same position often still awake at 5am even though exhausted. The only pills that had any effect were of the Zopiclone sort but as they meant I fell badly on my knee ... and now have rheumatoid arthritis to boot I dodge those and just keep trying to sleep without any sides 😔

[Tre123 in reply to bubblyalex]

Oh gosh so sorry about your knee. I wish you all the best with trying to fall asleep naturally. Please let us know if you ever try anything new that helps

[bubblyalex in reply to Tre123]

I will .. and likewise please 😁