By which I mean, in the middle of the night, when the pain stops you sleeping, but you can't get up on your own ( and what would you do anyway) and you don't want to wake your partner if you have one? I've tried: having my phone on radio and putting ear phones in; reading on a Kindle; sucking polo mints ( other mints are,I'm sure, also available); meditating; crying and feeling sorry for myself and once, I'm ashamed to say, groaning loudly in the hope that my wife would 'accidentally' wake up and a. Feel sorry for me and b. Help me get up to go to the loo. I've also tried swallowing large amounts of oral morphine so I can feel my pain, but I really don't care...
Just wondered if anyone had any other ideas ? ( Other than pain killer stuff- for lots of complicated stomach- bowel reasons I can't take any more than I do)
What I'd like to do is sleep in a warm bath, with someone reading poetry to me. Maybe intermittent blasts in a steam room or sauna.
Just interested, not desperate 😀 x
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LizzieR
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In an ideal world, my bed would be a Thunderbird launching platform that could move me upright, deliver me to the bathroom/wherever, and return me - all without even needing to press a button.
It would also be able to pop me into and out of a sauna at will.
Plus, there'd be something that could move the duvet for me when I've got no grip or the shoulder's being uncooperative.
Star Trek transporter badges !! Beam me up Scottie! What about a replicator in the spare bedroom. We could transport out of bed to it and order an early hours snack and drink! Mine would be a huge mug of tea and M&S chocolate covered brandy snap! Seriously, I listen to Classic FM or one of my playlists with quieter music. Late night music faves are Moody Blues and Alan Parsons' Project. Some fab soft/prog rock. Yes too. I play very different things during the day .. Heavier ... but those faves relax me.
Hi, I think that your not on your own in this and thousands of us are suffering.
What I started to do was stop using the radio and music and even the ear phones, I didn’t realise that it was doing more harm than good, I think so, and I’m not a medic or anything else in the medical world, just that it works for me.
Music works for some of us but not for others. I find it helpful if there is noise outside. I'm a light sleeper and we have neighbours' cats who love to wail in our garden!
Ooh l would love to have someone standing by to sort the duvet out when I am in a “the majority of bits don’t hurt too much but if I move to sort the duvet out I’ll never be this quite uncomfortabley confortable” again tonight.
Also I would love a lie in - not a “I can’t move this morning because it’s too painful” lie in but a “I am not in too much pain to stay in bed” lie in (and maybe even actually go back to sleep lie in)!
Yes, I have lots of the 'I can't get out of bed cos I'm in agony' or because I'm so stiff I can't move and need to wait for help... But not many of the other sort. I'd prefer to be able to leap out of bed to go running at6 like I used to - but sleeping in because I'm comfortable seems more realistic lolx
What a good idea- not thought of that. I'll give it a go. I use a dog hard water bottle which stays warm for ages,but I never know which part to put it on first. Thanks!
I rub ibroprofen gel on my pain.this sometimes helps enough for me to nod off but mainly I try to keep moving body parts.It's horrendous and makes me ratty.I could be murdered in my sleep and my husband wouldn't wake.
Once I get up in morning I am lot better but once I sit... there it goes again.
Lol yes me too. I move round and stretch so much at night it's like several hours of physio! Once I get in the bath I get a bit better, but if I sit... Well,you know what happens! X
I just used to just lie there, the duvet off my feet but still causing burning pain wherever else it touched, trying to find the least painful of positions, tears rolling down the side of my face. On better nights when I could roll out of bed I'd come upstairs, place the electric heat pad on the most painful area that night & try to get in a better position in the recliner often falling asleep from sheer exhaustion of many nights of broken sleep. Then my GP prescribed amitriptyline & once I'd reached the most effective dose & the correct time of taking it I started to have relaxing, restful sleep. I empathise, it can be really difficult coping with the days too when you're also soooo tired.
I also have restless legs which drive me mad! I too am on amitriptyline and have been for a few years. It has been a life saver for me - I usually fall asleep within about ten minutes of falling asleep, and usually get two or three hours of unbroken sleep, whereas before amitriptyline I found it difficult to drop off and disturbed every time I turned over. I also take dihydrocodeine, rub on deep freeze and spray on deep heat. I smell amazing but it works for me. My oh sleeps through all my dancing legs but I find it impossible to stay in bed with so come downstairs and add more deep heat to the mix!
I'm postmenopause now Julie so I wouldn't really know. Something to ask your GP though, can't hurt, broken sleep is the pits so it makes me really grateful if works for my OA pain, that was part of the my GP prescribed it, that & as a muscle relaxant for my neck spasms..
I am two years post meno and it has improved a lot but I feel really annoyed waking up several times as I often can't get back to snooze for ages! My head gets so hot (but dry) I could fry an egg (hey that could be something to do till I get back to sleep .. Eat a fried egg sarnie! 😝) Doc says symptoms tend to improve after three years. Hubby's friend's wife has had bonkers flushing and all sorts for 20 years now but won't have medication. Won't try the red clover or black cohosh. I don't mind waking up as long as o drift back off soon after and have a mineral water facial spray and a tiny fan on the bedside table and a small bottle of water just in case I'm very hot! Not always but the annoyance is as so many of us know .. Not being able to go back to sleep for ages due to pain. Waking up knackered in the morning from lack of sleep. X
I'd certainly have a word with your GP, it sounds far worse than I experienced. When I talked to my GP about my menopausal experiences & when she took my FSH level it was off the scale so we talked it through & decided I could probably manage it with the option if it was becoming a greater problem we'd discuss it again. It was her saying I was on plenty of meds already that made the desision easy. She actually said not to try stuff like black cohosh funnily & I promised her I wouldn't & of course I haven't.
Love the image of you frying an egg on your head for a midnight snack! Yes, definitely have a word with your GP, amitriptyline has worked very well for me & hopefully you'll find so too if it's thought an option for you. Sleep is so precious, good restful sleep anyway. x
There's no way I'm going to have HRT so if this waking up with a fried egg head hasn't stopped or greatly improved by the new year I will ask my doc if the muscle relaxers will work when I've meno madness waking me up! X
Love the description of a fried egg head. I know just what you mean. Going to tell my doc it x
Some of the fantasy ideas are great! Oh, to be able to be free of all pain again.
I find the only relief I get at night, after waking, is when I pray for whomever comes into my mind. Or go through the times tables; anything to not concentrate on the pain.
Yes. It does help a lot. I'm listening to 'A tale of Two Cities' at the moment because I thought it was one of those classics I'd never got round to reading. Turns out I must have read it at some point... My brain is so addled lolx I've also found something called ' Futurelearn' - free online courses from universities from around the world. They are very interesting and while away the wee hours when the pain is bad. I'm doing one on the life n times of Richard 3rd at moment, but there is a whole host of topics x
It might be worth seeing an occupational therapist about how to move once you are in bed.There are techniques and aids that can help you be more independent so that you can change position and even move the duvet.
For me, it was worth investing in a topper, suitable pillows and a silk duvet and have a rope to use to help move in bed. It also helps me to roll onto one side to lever myself up to get out of bed now I have to get out of bed several times a night!
Thank you for those suggestions. I have had an OT- lovely woman who got me a stair lift and is getting me a wet room. But because it's in all my joints I can't use anything like a rope to pull myself up. Glad it works for you though xx
I often think that I need to live in a warehouse flat - somewhere with lots of exposed load-bearing beams - it would be a piece of cake to set up all sorts of hoists and tracks as well as fixing points for AntiGravity Yoga hammocks etc.
Of course, for me, I'd need a warehouse loading door as well so I'd have the ability to connect a hoist and then lower me + kayak into the water way that passes alongside my fantasy warehouse so that I can hit the water and paddle. And on the way back, the hoist would lift me back into my living space and assist me from there into a shower and sauna.
Oh that would be awesome! I want one! Do u manage to still kayak? I used to love it but I have it in my back, elbows, wrists, hand , shoulders- as well as legs etc- and can't figure a way of doing it! X
As you'll know, the worst part is getting into and out of a sit-inside kayak - for the in-between, because I'm never happier than when I'm on the water, I'll take what comes my way, tho' it does mean that my preferred stroke has changed considerably.
I'm a keen sea kayaker with some white water. Since *this* happened, I've only been out on flat water (some excursions on the sea when I've been staying close to land or it's not a windy day with odd tides). I aspire to go back onto the sea again.
There is a ludicrously tiny availability of adapted kayaks in the UK. In the US, where fishing kayaks are popular, these come with car seat style installation that can be adapted round your back and legs. Again, in the US - there's a breakaway gadget that attaches your paddle to your wrists/forearms to lessen the grip for you while still providing stability. And all sorts of removable stabilisers.
But - you don't need to read my rant about the BCU having the rhetoric of adaptive paddlesport in the UK but virtually no interest in enacting it.
Are you a sit-inside or sit-on-top kayaker? How are you in a canoe (with car style seat?) and using a double-blade which I find easier than a single-blade (courtesy of shoulder ligaments/impingements etc.)?
As always, this sort of thing can be so much easier if you are a member of a club with lots of fit, strong people who are willing to help you get into and launch a boat, help with any portages, and then help you out of a boat at the end.
I haven't done much but I love it. My wife is the pro- she comes horse riding with me and I went kayaking with her. Well, used to. But I loved it. Especially rapids- we did some white water and sea stuff in Scotland which WS awesome. I find now I can get in, but v quickly my back/ knees / feet etc hurt a lot. My real issue is holding the paddle. I used to worry about my stroke but now just holding the flipping thing is hard. Also moving to actually make the stroke. My shoulders instantly puff up and my elbows/ wrists/ fingers lock. I think I could just be a passenger, but as you say- sitting is hard. Need to be lifted out!
I looked at all the adaptive stuff, but not sure there are enough adaptations for me! I hope you find a way x
I have a load of lymphoedema bandages on my legs and so when I get into bed (with my hubbys help) I am virtually stuck as I cant move with these things on.We sleep in seperate beds on seperate floors in the house so I ring him on the intercom or his mobile and he comes down to sort me out.
If I wake in the night and try to move and cant it sends me into a panic attack which I find frightening.I try not to bother him if I can help it as I know how tired he gets looking after me but never complains.So altho its not ideal it works and he looks after me .But I never forget how much I rely on him and just how vulnerable it makes me,
Sometimes I can put off wanting to get up (and I need his help to do so) by switching on the tv or iplayer on my ipad and this distracts me for a while but not too long,so I try to make sure I dont consume too much liquid before bed.
Oh I am so sorry you struggle so much. I try not to wake my wife too. I often lie there with pain in my side because I'm so desperate to wee! ( Sorry, too much info!) Thinking of you xx
Waking up in the middle of the night with pain has to be one of the worst "symptoms". This particular one started when I was in my early 20's. 20 years before I was diagnosed with anything.
Besides cry and curl my body into itself in pain? I try to distract myself enough until it passes. I have medical marijuana that helps a lot. I smoke that and distract myself with a game on my phone until I can catch my breath from the pain and hopefully go back to sleep.
Yes, I’m in the US, in Oregon. Everything is legal here, even recreation. I feel blessed. Narcotics are so much worse. But yeah, sometimes I’m in that horrible state of awake/awareness/sleep where it hurts so bad but I can’t force myself awake and to get into a bath. It sounds like so much work. All I want to do is cry. It’s awful. I’ve told my rhuemy, waking up in pain in the middle of the night is awful. Then you end up tired the next day, making your RA worse. It’s a vicious cycle. Luckily it only happens a few times a month, depending on the month.
I could not do anything when it happened. I could only very slowly move my hands towards my stomach, that would take about 3 to 4 hours for my hands to get to my stomach, then I had hard time to swing myself up. I could not bend my ankles and I was in great pain.
What I wanted those days was to get enough sleep but the pain just woke me up and I hardly slept for 2 hours every night. I therefore got very tired during the day and I went to sleep very early to catch up with it as much as I could.
Currently I am still trying to learn how to sleep soundly at night. After that many months of being woke up in the middle of the night, now kind of get used to wake up or half asleep.
Yes, I think I'm just used to it. I don't look forward to sleep anymore but I've reached a stage where I just accept is as part of life! Hopefully I'll suddenly start sleeping through! X
I have tried a heating blanket and it really helps me at night. I just lay on top of it and let it heat up the air around my body under my blanket. It takes away the pain but can sometimes make it feel worse the next day.
They are too expensive sadly. So I won’t be getting one anytime soon. But if I ever move out when I turn eighteen it’ll be the first thing I save up for.
Hi I am alone but not , I have out watched Netflix ( the type of programs I like. ) I have out watched now tv ( as before) I watch prime tv down stairs but that has a lot of what I have already seen. And my daughter sleeps in the living room so even if I did get up I would disturb her. I am in pain but so board the winter is here as well and I lie here wondering if this is my lot I have no interest in anything am I depressed I shouldn’t be I am on antidepressants dulexatine for nurieopathy 60 mg and just put back on amertriptalyn 20 mg to help me sleep. I have oral codean but I swallow so many pills in the day . Sorry I should introduce myself,I have been part of this group for along time but initially was told I had reactive arthritis then fibro now mctd my knees now have to have braces on them and my joints in my fingers need braces as will pop out of socket ,my neck needs support a lot of the time as it feels to heavy for my body. Ankles and wrist hurt and waist and there’s fatigue and apparently breathless only I don’t realise I have I turned into my grandmother over night literally after having septicaemia ☹️ I would love to sleep in the bath but the water goes cold 😪 and I go wrinkly.
You know I don’t feel like I am suffering , I still feel a fraud sometimes on a good day all the bad stuff disappears ,today I want to sleep but can as have to drive ,to take eldest daughter shopping 7 miles away nearest supermarket.
I know exactly what you mean! Some days I feel like I'm at death's door and at other times I feel a total fraud. I hope the drive and shopping trip go well x
I can empathise so much with all the various degrees of pain you are all suffering. I think my worst experience was when I just lay in bed and cried, with my son kneeling beside me, anxious to help but frightened to touch. After trying so many drugs I now have Ritoximab infusions and they have given me some of my real life back - truly a wonder drug. Oh, and I would love to have a bath but can't get in and out!
You need a walk in shower! If you live in the UK and don't earn much, the council will fit one for you for free. I also have a stair lift from them. Life saving! I'm glad to hear you've found a drug that works x
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