insomnia- help! : Hello- what do you do to occupy... - LUPUS UK

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insomnia- help!

Whatafaff21 profile image
9 Replies

Hello- what do you do to occupy yourself when insomnia hits? A week of waking at 12/1 and not nodding off until gone 5 and am running out of things to do. Have tried herbal teas/ trying to stay awake longer/ upping the exercise but nuffink helps. How do you manage yours? Is it linked to flares? Have you noticed a pattern with it? I don’t seem able to nap during the day either. Any advice gladly received! Am wondering whether exposure to lighting in the workplace has a link- horrible strip lights where I work.

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Whatafaff21 profile image
Whatafaff21
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9 Replies
StriatedCaracara profile image
StriatedCaracara

My sleep pattern corresponds to flares. Symptoms wake me, as does feeling hungry. Sometimes, I sleep better after eating or getting the room warmer.

If the day has been too busy, then adrenaline levels can be too high to switch off.

I don't have caffeine drinks after midday. Then, there is the side effects of medication. Prednisolone etc

I have been on Mepacrine for six weeks (alongside Hydroxychloroquine) and it seems to be improving sleep patterns, reducing fatigue and also hunger levels. Not sure by what mechanism. Somehow Hydroxychloroquine and Mepacrine can work well together, and I am not sure how they do this

This post has links:

healthunlocked.com/lupusuk/...

Whatafaff21 profile image
Whatafaff21 in reply to StriatedCaracara

Thankyou for this and the info on the Mepacrine which I am looking at with a lot of interest. It seems nuts not to offer it. Hmmm now you mention it my hunger has been out of whack recently too- I am waking up hungry in the early hours also. And felt a bit flared up at work recently when we were out and about ( awful sweating, horrendous brain fog, puffy face, inability to string a coherent sentence together) then no sleep. Work definitely and also family circumstances impact too. Thank you. You give amazing guidance and advice x

StriatedCaracara profile image
StriatedCaracara in reply to Whatafaff21

I'm like that. When I flare I get really hungry.

Sweat far more then, have fevers, so guessing metabolism increases and need to eat more, to replace what is used.

At night feel rubbish, so wake up. Bit of vicious cycle.

Whatafaff21 profile image
Whatafaff21 in reply to StriatedCaracara

Omg this reads just like me this week. Fevers also. Yes, of course that makes complete sense. My brain cells are only just waking up. It’s hard though to reduce stress sometimes. I can’t see any change to my environment atm. I may try cbd oil or just go for a walk. I find being by water incredibly soothing so may try and get some gf fish and chips this weekend to stave off the hunger! Thanks again it’s HUGE to hear similar experiences. V reassuring and I will follow the M thread also x

StriatedCaracara profile image
StriatedCaracara in reply to Whatafaff21

Fish and chips ..Definitely

Been thinking that too last few days..

StriatedCaracara profile image
StriatedCaracara in reply to Whatafaff21

Done separate post to see what symptom changes others have noticed with Mepacrine.

healthunlocked.com/lupusuk/...

StriatedCaracara profile image
StriatedCaracara in reply to Whatafaff21

I have had lots of stress too last few years. Rheumy said to me, if reduce stress, treatments work better.

Guess there is less 'rubbish metabolism' happening with less stress. If things are less complicated then our drugs can do more of what they are intended to do.

JenniferW profile image
JenniferW

A few years ago the lights in my work place were updated from the original 1980's strip lighting to something modern and I noticed very quickly that I felt less tired at the end of a working day.

Whatafaff21 profile image
Whatafaff21

I notice a huge difference when I am in the office. Am floored when I get home. My eyes are so sore and red also.

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