Insomnia!!!!

[LLH76]

I’m so desperately tired but this insomnia is driving me mad!

It takes what feels like ages to fall asleep and then either at the magic time of about 2-3am I wake up or am woken up and that’s it for about 2 hours, can’t get back to sleep!!

I’m caffeine free, so it can’t be that, sometimes I’m in pain but sometimes I’m just restless, can’t remember the last time I slept through the night!

Anyone else have this problem?

[weathervane]

Poor sleep makes the day hard to cope with. Is it any thing to do with meds you are on , steroids can affect your sleep. It may be worth discussing with your gp . My sleep pattern is quite mixed , at the moment i wake every hour so only sleep lightly then i get a shock every so often when I sleep quite well . I hope you can find something that works to help you sleep better.

[LLH76 in reply to weathervane]

Hi, I’m on 200mg of hydroxychloroquine, that’s all, tried taking that in the morning instead of evening to see if that helps but didn’t make any difference, new mattress...apart from sleeping pills I think I’ve tried everything!

Yes, you start the next day on the back foot all the time!!

[weathervane in reply to LLH76]

I would think sleeping pills are the last resort ☹️ When my sleeping was really bad and im wide awake i get up and have a camomile tea and watch tv or read for a while then go back and I usually find i can sleep for a while. But you should have a wee chat with your doctor if it really bad , 🌸🌸

[Hidden]

I relate 100%. I have always woken during the night for as long as I can recall. As a child and young adult it was due to severe eczema with pompholyx. Then itchy scalp and alopecia aerate. Then I think it just became habitual what with pregnancies, breast feeding, young kids and the allergic dermatitis etc

Then RA/ polyarthritis started and I’d wake up with excruciating locking in joints of hands, wrists, shoulders and knees. I tried Amitriptyline for 3 years but it finally made me too ill with side effects. The others. All the while I treat myself to one zopiclone 7.5 weekly. They work for me so occasionally I take twice a week. But the next day the taste and dizziness is always worse so I couldn’t get addicted to them!

Nowadays I’m lucky to sleep more than 2 hours a stretch. Just been given beta blocker to try for tremors, very high BP - GP hopes it will help with sleep along with rest of my meds. 🤞🏽🤞🏽🤞🏽 failing that I always rely on my mindfulness app at night to relax me. I don’t know if you’ve tried this but it does help. The problem is that it only works to get me off to sleep but a few hours later I wake up again!!

[Treetop33]

Yes I get this too - up at 3am regular as clockwork. Can't get back to sleep again. And I frequently wake up at night too. Lupus causes sleep problems, and so does babies (tick), anxiety (tick) etc etc.

Culprits, as far as I've heard, might be adrenal problems (the cortisol spike?), hypogylcemia (you are waking up hungry), thyroid, a noise outside that comes regularly at a certain time.

Docs don't help with this. I've tried holy basil, CBD oil, reading before bed and banning screens at bedtime, holy basil, co codamol (worked a treat but the constipation was horrible). Sometimes I do get a good nights sleep, and feel so much better. It's frustrating.

[Minnskimoo]

Sorry to hear you’re having a bad time with insomnia. It’s a nightmare-without the actual sleep!🙆🏼 It seems to be a symptom for many.

I was prescribed antihistamines for night time.- the type that ‘may cause drowsiness’ to apparently calm a jittery immune system and help send me off to the land of nod! Except, I can’t tolerate them - feel terrible the next day. I’m already zombie like after lack of sleep -these seem to take me to the next level....😬

[LLH76 in reply to Minnskimoo]

Hi, funny you should say that, I use fexofenadrine for hay fever and I’m sure I sleep better with it, maybe I need to get some more from GP 🤔

[Minnskimoo in reply to LLH76]

Hi LlH76

I take Fexofenadine during the daytime but it doesn’t affect me at all. Artarax is the one I am unable to tolerate. 😬

[LLH76 in reply to Minnskimoo]

Hi, it works brilliant for me in hay fever season with no side effects, haven’t heard of Artarax, but they help with PND, which can cause sleep disturbances so think you might be on to something, thanks.x

[Minnskimoo in reply to LLH76]

You’re welcome! x

[LupusKaren]

Are any of the ladies suffering insomnia here menopausal? If so, try magnesium spray, apply half an hour before bed, if it stings, can be indication of you being magnesium deficient, but as always check with your doctors.

[Minnskimoo in reply to LupusKaren]

Hi LupusKaren.

I’m not menopausal - had a total hysterectomy 20 years ago. However, I have read that some of my symptoms could be related to magnesium deficiency- I have asthma and muscle twitches periodically, difficulty swallowing and so forth! I will ask if this is a contributing factor when I visit the consultant on Thursday.

Thank you 😊 for the tip. Most useful!👍🏼👏🏻

[Ianrussell69]

Hi I’m on 200 hydroxy dayley And normally methatrexate but had to temporarily stop the methatrexate I am always awake around 4/5am every day it’s horrible I know it easy to say but try not to get down I’ve accepted the fatigue and the early mornings and my stress level got better and I do get better nights but it is very difficult as lack of sleep normally makes the ctd worse vicious circle really the dr prescribed amitriptalin/nortiptalin and this medicine makes me sleep But I get hangover like feeling I. The morning hope you get it sorted

[Lisalou19]

Struggled for so long now!!! I’ve no diagnosis

I can fall asleep but can’t stay asleep

It’s driving me insane , I used to be such a good sleeper

[LLH76 in reply to Lisalou19]

Hi, I’m not formally diagnosed yet either but put on hydroxy, looks like it might be a common problem amongst auto-immune?

[Lisalou19 in reply to LLH76]

I find as well if I have a very bad night, like 3/4 hours, my symptoms start to flare up

I take sleeping tablets now, but have to change them ever 2/3 weeks as they stop working.

It’s almost like the immune response kicks you out of sleeping!

Desperately waiting on a referral appointment

[Jhpc]

Try having a glass of milk with your tablets at night, I have it cold, this works for me some nights.

If I have a bad night I have a berocca in the morning a refreshing orange drink does help me cope with the tiredness in the morning.

Hope this helps you.

[LLH76 in reply to Jhpc]

Hi, I’ve used berocca before, maybe I will give it a try again, will defo try the cold milk with my tablet, that sounds good, thanks!

[Loriel]

Yeah my GP put me on Imrest. Thank goodness because I hadn't slept well in years.

The best thing about it is it isn't addictive. So I've got a clear conscience too. One less worry.

Found one extra thing. Have you heard of Indocid? It's an anti-inflammatory and it comes in two ways. One - a capsule. Two - a suppository. You can't use the suppository too often as it can constipate you. For me I don't allow myself to use it anymore than maybe once a month to two months. I save it for when I truly can't take the muscle and joint pain any longer. I use the suppository because for me I find it more effective. I use it and go straight to bed. I make sure to take the Imrest an hour before so that I get the optimum sleep. I don't hear a thing until morning. The pain usually is less the next day or two as well.

I hope these two things can help you too LLH76

[Cas70]

Hi - insomnia since childhood exacerbated by Lupus/Sjogrens - solved by Holland and Barrett Jacob Hooey Cannabis Oil. Legalised last October - one or two drops under the tongue- read the instructions. Only the flower heads so non addictive, no contra indications - am on same medication as you. Worth a try. Good luck.

[Paul_Howard Partner LUPUS UK]

Hi LLH76 ,

It may be worth examining your sleep hygiene. The National Sleep Foundation has some helpful tips about this at sleepfoundation.org/sleep-t...

If your pain is affecting your sleep then it may be helpful to discuss this with your doctor. We also have a blog article which has some tips for pain management - lupusuk.org.uk/pain-managem...

[LLH76]

Thanks Paul!