Sleep: How many hours do you manage each night Just... - NRAS

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Sleep

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How many hours do you manage each night

Just asking as I struggle and rheumatology have twice contacted my GP because my sleep pattern is very poor due to pain.

I only wear my Fitbit at night and the results are not good.

Told my GP no more meds and that I am reducing my tramadol dosage as of yesterday

Presently taking 29 pills a day and it is just too many.

The only time that I am not in pain is when on steroid injections.

GP has now done as he was told and swapped the pill sulphasalazine for liquid

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22 Replies
rheumatoidsewer profile image
rheumatoidsewer

I also sleep quite badly partly because of pain and partly because I think RA plays havoc with sleep patterns and daily routines. For instance if I have slept for 2/3 hours in the afternoon I am not so tired when going to bed and this makes me notice pain more. So I am trying to establish a better routine to help. If I am tired due to lack of sleep I force myself to do something restful in the afternoon (read for instance) but not sleeping. This I find helps because then I am so tired the pain is not so bad. I also find camomile tea is really helpful a mug of camomile tea drunk in bed before trying to go to sleep really helps to relax and soothe. Also better targeting of pain relief. I try to take pain killers with a purpose not just as a routine without thinking do I need this? For example if my husband is taking me shopping (even if I am using the scooter) I take pain killer to help with that activity but if I am listening to the radio then I don't need pain killers for that and try to establish a comfortable position and get up every so often to minimise pain. I also am losing weight which helps to keep pressure off joints and try to do my physio exercises as best as I can. Mindfulness or meditation (I use youtube for exercises) can also help as can distraction sewing however badly is a good distraction technique. Hope this is of some help I have found coming off morphine and using painkillers more wisely as really helped me using some of the above.

Rubyroo1 profile image
Rubyroo1

I'm not sure how many I actually get but it doesn't feel like many, the pain in my knees and wrists won't go, so getting comfy is a nightmare, so constantly tossing and turning. Then we have a ginger monster (cat), who wakes us up trouncing up and down the bed, knocks stuff off the bedside tables, scratches the curtains because, he is either after company to eat, or affection/to get warm ..........Completely knackered this week the eye bags are getting bigger as I type !

I do have a pillow spray from Boots, trying CDB oil - (tastes disgusting), cup of herbal tea and ibuprofen too, I might try ear plugs next to at least block the cat out, failing that I might ask my hubbie just to knock me out ! :-)

sylvi profile image
sylvi

My dr added amitryptaline to my lot of meds and to be honest it does help me sleep. I can get six to seven hours a night which has been good for me.xxxx

keeta profile image
keeta in reply to sylvi

My doc added same to my collection and yes it does helo from no sleep to some sleep .xkathyx

in reply to sylvi

Yes me too amitriptyline 2 x 25 but again upset tummy following day

Mmrr profile image
Mmrr

When unmedicated my sleep was atrocious and just added to the burden of day to day things to deal with. Methotrexate has been THE only thing that has stabilised my sleep. I've had to reduce the dose due to side effects and the sleep disruption is creeping back. no other medication has helped me sleep including amytrptiline.

I sometimes snooze in the afternoon and it makes no difference to my night time sleeping.

in reply to Mmrr

Ruins my sleep

Leics profile image
Leics

Hi, I’m very lucky to sleep for more than 5 hours a night when my pain is good or awful. I’m up off the chair at least every hour to keep me moving during the day because the more I sit in one position the stiffer and more pain I’m in. Distraction is the best coping method ever I never sit and wallow. I do find sitting with legs up on chaise is much better to keep ankles from swelling. Only time I get a good nights sleep is if I’m really poorly and then it’s all I can do usually. Occasionally I seem to relax more at bedtime if I have a hot chocolate or cup of tea sometimes caffeine free. Luck of the draw I’m afraid with this disease. You might find that it’s your meds that aren’t helping sometimes insomnia or different sleep patterns can just be a side effect. I would dearly love to be a bit more active but find that sometimes if I’ve overdone it it bites me in the butt. However still trying 🤪

in reply to Leics

I have friends here this week and Kelly has known me for years. She said last night I was so peaceful when She checked on me and the best she has seen me sleep since she has known me.

Simba1992 profile image
Simba1992

I had a hard time with sleep in the beginning of my RA but after I started LDN my sleep has always been good I sleep 8-9hr every night.Better than even before RA. When I feel pain it's always when moving, never when still. I do feel fortunate in this respect, would be terrible not getting enough rest:(

woodstar1 profile image
woodstar1

Hi Monty, my sleep was absolutely rubbish as well. I got my self some legal 15% CBD oil, just to try and for me it's great!! It only cost 20 from eBay, might be worth a try pal.

keeta profile image
keeta in reply to woodstar1

Yes i.ve heard it helps my grandson is getting me some to try .heres hoping .hugs xkathyx

in reply to woodstar1

I might try cbd oil if they would reduce my daily pills but I am old school and no weed lol

woodstar1 profile image
woodstar1 in reply to

There is very little THC in legal CBD oil, have a quick Google, it explains it there pal.

in reply to woodstar1

Two consultants have now offered it to me on a trial so maybe but I am so old school .

Would even consider a trial of anything if they took total control of my healthcare

I slept v badly for first year minty, 3 hours at a time at most; not sure if this was RD itself or drugs. I have slept so much better on biologics for last 3 months; even my kids have commented on how much better I seem in myself. Not sure about joints yet but didn’t realise how much lack of sleep was dragging me down. I’m sorry if pain is keeping you up & hope they can give you something more effective soon x

Tillie20 profile image
Tillie20

Hi I sleep very badly but get some sleeping tablets from my GP, when I have a flare I don't sleep at all I just want someone to cut my hands off, but the thing that keeps me awake is my feet they ache at night I suppose they are the same during the day but doing so many things I don't feel them, I am very lucky I can still do most things except when in a flare, hospital has just increased my metojet from 15 to 20 so when I get used to increase I hope it

will help but hate the nausea hope it does not last too long X

cjsabc profile image
cjsabc

I suspect that amongst those 29 pills, one or more of the combinations will have contraindications that include sleeplessness. Reducing Tramadol is a start. Ask the doc if there's a possibility of reducing the number/toxicity of this huge intake of meds, perhaps turning to such herbal alternatives as Traumeel, which is an Arnica-based relaxant and anti-inflammatory. The doc may also consider prescribing CBD for pain n improved sleep quality.

Good luck n god bless you Month.

CJS

cjsabc profile image
cjsabc in reply to cjsabc

I mean. Minty!

in reply to cjsabc

Hate the pills and now pills to counteract other pills

Jesnaskah profile image
Jesnaskah

My first few months as the RA was hitting me (and I had no clue what was happening) I was getting maybe 1-2 hours of sleep.

I dreaded the evenings because I knew soon I had to "go to bed." Wherever I'd lay down in a matter of half an hour, pain from shoulders would trickle down into my hands and I'd get completely crippled from the pain, and my neck and back felt like I'd been hit by a bus...it was truly insane! Then my husband would help me up and id just go downstairs to my sofa, try the best I could to lay 5 or 6 ice packs over a bunch of pillows propped up, so that I could lie back but not be flat, and I'd try to numb my entire body thru the ice so I could get an hour or so of sleep. It was a complete nightmare!

Then when I finally received 20mgs of Prednisone, it was a game changer. I've been okay sine, it's been a year and a half now. I'd tried 3 out of 4 dmards. I didn't want to deal with the side effects anymore, so I stopped and just stayed on the Prednisone since last July, although I've been trying my best to taper, currently down to 0.5 mg. I also y take LDN, started that early this year and may be why I am ok without dmards, besides changing my diet.

We feel your pain.. . Sleep is SO important. I personally need 9-10 hrs... And this was BEFORE RA... So I try my best to get enough sleep now.

Simba1992 profile image
Simba1992 in reply to Jesnaskah

I do think LDN makes a difference. Not a cure but makes a difference in sleep and pain level.

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