Lack of sleep. What can I do?

How are you all doing? Have any of you any suggestions as to how I can ease my pain and get more than 1hr per night!! It's driving me crazy!! Love to you all xxxx

[sheri44]

hi 🙋 hunny. Sorry your struggling too. I did after transplant went back to a few extra hours when home but recently its been awful. I'm waking up after an hour sweating or uncomfortable I'm so tired. I try not to nap in the day. Sometimes i just end up having half hr but not usually. I've had meds from doc that haven't helped. Wish i could be more positive.

i hope it settles for you or someone can help. Wishing u luck and lots of love 💞 sleep deprivation is the worst X SHERI X 💜

[Hidden in reply to sheri44]

Thank you so much, you are very kind. This has been going on for 2 years!!! How are you feeling today? I was off sick for a time but went back to work part time in February. Work have been brilliant and it's definitely helped me emotionally being in work. I've got a wonderful support network with work, family , friends and all you wonderful people on here. I don't know what I'd have without everyone, I really appreciate everyone's support. Please take care. Lots of love Lynne xxxx

[sheri44 in reply to Hidden]

I'm feeling so drained its untrue. Sleep deprivation is the worst. I'm walking into a room forgetting why. Just one decent nights sleep 💤 is all i ask for. I had my hernia operation 2 weeks ago so gotta rest. That in itself gets boring quickly. Probably why i don't sleep well but pain has always been a major factor for me too. Sending lots of love xxx 💖

[Hidden in reply to sheri44]

Thank you hope you feel better soon.

Sending love and hugs your way xxxx

[chugalong]

Hi, know what you mean there, it makes the nights very long. Besides trying not to sleep during the day I put on very low volume soft relaxing sleep/soothing music and in very bad days make myself think of the music. Find it works most times though sometimes I just lie in total silence but I always try and lie absolutely still even keeping my eye lids closed so nothing moves at all and as hard as it is try make my mind blank of all experiences, fears and thoughts. No matter what sleepless nights are not nice at all but it’s all ways nice to see the day creeping in and the sounds of the bird song in the early morning.

[Hidden in reply to chugalong]

Thank you and that's very true. How are you doing at the moment? Xxxx

[chugalong in reply to Hidden]

I feel I am doing great and just getting used to changes and capabilities but so thankful to still be here. Doing and enjoying volunteering at Age UK one day a week.

[Hidden in reply to chugalong]

That's great xxxx

[Jacksonfield]

Mindfulness meditation can be good for sleeping. I have a cd it does a guided meditation called the body scan. You focus on your breathing and then each part of your body in turn. It is very relaxing and helps me sleep xx

[Hidden in reply to Jacksonfield]

Thank you, it's hard cos pain wakes me up. Going on for 2 years xxxx

[Jacksonfield in reply to Hidden]

Sorry to hear that Lynne. The cd comes with a book called mindfulness for dummies if you want to give it a try xxx

[Hidden in reply to Jacksonfield]

I have tried CDs before but will give it a try thank you xxxx

[Ninie]

Hi have you tried herbal teas

[Hidden in reply to Ninie]

Thanks, I will give it a go xxxx

[Hidden in reply to Hidden]

Don't forget, Herbal tea's are a No No for anyone who's had a liver transplant.

[Hidden in reply to Hidden]

Thank you. I'm still at fatty liver/ Nash stage yet xxxx

[RodeoJoe]

It's a big problem because of course the usual sleeping pills are not good for the liver. I suffered really bad with insomnia and could swear that I didn't even sleep for a month at one point.

However things that did help were bath and hot drink before bed, lavender and low calming music. Also what doesn't seem to work for everyone but does for me is white noise or ASMR.

[Hidden in reply to RodeoJoe]

Thank you. It's been going on for 2 years xxxx

[navigatinglife]

Hi, I drink chamomile tea, bananas and lettuce are both soporific, so i eat a banana or 2 through the night, plus more chamomile tea. let's hope they sort your pain out as like you say the pain reawakens you. Not sure if you can take kalms, or wilkos sleep herbal version. I only do when I am desperate as pain is worse when one is tired also. I do all that deep breathing meditation stuff too.

Best wishes xx

[Hidden in reply to navigatinglife]

Thank you. I will try anything once. Sending lots of hugs and love your way xxxx

[navigatinglife]

Main ingredient to look for is valerian and ask your GP, liver nurse etc if you're allowed to take this. I prefer wilkos, and only cost approx £1. ☺

virtual hugs and love back to you 😍x

[Hidden in reply to navigatinglife]

Thank you xxxx

[cazer]

are you pre or post transplant??

[Millie09]

hi Lynne , I can so relate to you sweetheart . I haven't slept properly now for 2 years . now even worse than ever . I had sleep therapy but that didn't do a thing .I purchased some moisturiser from a company called LUSH you just moisturize your hands and body etc.. the smell is absolutely gorgeous .I know it has lavender in it but many other natural Ingreadients

i was sceptcal at first , and may be it's psychological I don't know .but I find myself relaxed much more than I did and I can get about 5 hours sleep each night now .give it a try .. it could help you hun xxx

[Hidden in reply to Millie09]

Thank you, I will try it. Mine has been going on for 2 years too, pain keeping me awake every night is no joke is it . Please take care, lots of love Lynne xxxx

[Millie09 in reply to Hidden]

it's called sleepy by lush .. it's worth a try Lynne .. it is so difficult when your in constant pain .my 37 yr old daughter has fibromyalgia and they have given her 60mg of fluoxitine .seems to be helping ..take care .. lots of love .Linda xxx

[Hidden in reply to Millie09]

Thank you so much, I will try it . Hope your daughter is feeling better. Lots of hugs and love Lynne xxxx

[Dulux]

Try and stick to a routine, settle yourself for sleep, try and avoid phones, tablets, tv right before bed. When I used to sleep in the day I'd make sure you do early afternoon and try and find the right amount of time to sleep so it doesn't effect your night sleep.

Pain is the difficult one, I always used it to slow me down, rather than masking it and carrying on. When pain takes over your mind it's time to take something.

Gareth x

[Hidden in reply to Dulux]

Thank you. I'm just at the end of my tether, 2 years is a long time .

[Hidden]

Hi

I think pain makes it nearly impossible to sleep. I have on average only slept a maximum of 4hours continuous a night for 13 years and thats without pain.In my case post tx meds ie tacrolimus without a dout causes intermittant sleep patterns along with vivid dreams when you do sleep. I did try valium from my gp for quite a while as it was a good relaxent I found. But I dont really like taking meds like them for prologed periods for obvious reasons. I even got a dog and took him for 2 hour walks at 4am every morning. I lost weight and felt healthier but the sleep patterns didnt change.I even tried recently daily in the better weather months walking a minimum 6 miles daily. I lost 3 stone but still my sleep is the same.I listen every night to the radio sleeping on and off now. I would say in your case clearly its the pain you have to address. I heard of a pain clinic a while back or pain management help. Can your gp not refer you to a specialised nhs centre.

[Hidden in reply to Hidden]

Thank you. I've been referred to pain management. Had one to one sessions which haven't helped much. Got a telephone consultation at the end of November to sort meds out. I'm at the end of my tether. You deserve a medal coping for so long with so little sleep.

I've got a hida scan on Monday to see if I've got lesions/sphincter of Oddi from when I had my gall bladder out 32 years ago or from fundoplication to sort GERD and hernia nearly 4 years ago. Watch this space!! Thank you once again. Please take care. Lots of love Lynne xxxx

[earthpixie]

I have had real problems with sleep now for over 5 years, since cirrhosis diagnosis. I rely on a tea called snore and peace, asmr sounds via headphones, and dr has prescribed low dose of amitriptyline. What did help is a free email service that daily sends you tips... just google ‘insomnialand’ ... Martin Reed who has suffered insomnia himself runs it... all sorts of advice...

[Hidden in reply to earthpixie]

Thank you, I will try anything, I'm getting desperate, goodness knows how you must be feeling. I have tried amitriptyline but didn't work , thank you anyway. I manage to fall asleep for a few minutes but it's the pain that wakes me up. I'm at the end of my tether but we have to keep smiling don't we? How are you feeling? Please take care. Lots of love Lynne xxxx

[earthpixie]

Just constantly tired-some nights I get as much as 4 hours now... another thing I found helpful was weighted blankets- not sure if you’re on Twitter-but Martin reed is on there too-just search for insomnialand has loads of useful links...

I don’t get as frustrated with myself now-as when you do it makes things harder. My doctor did suggest chlorphenamine maleate, also known as piriton (drowsy antihistamine) but wouldn’t try it unless you have go ahead from hepatologist... I haven’t tried it as of yet-it’s just another thing for my dodgy liver to have to process🤔 Hope you manage to get more sleep soon... 😁

[Hidden in reply to earthpixie]

Thank you so much. I really feel for you. Please take care. Lots if love Lynne