LUPUS UK
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Never feel like u've slept!

Is this something a lot of u guys can relate to or is it just me!?

I literally never feel like I've slept, I do have an 18month old who still wakes at least once in the night so get broken sleep but still just never ever feel rested.

I think once in my entire 38 yrs have I woken up and felt 'good' like I have been asleep.

I just wake up feeling exhausted like I could sleep for days.

I have aps and sle and chronic fatigue I suppose. I think it's all part of this condition isn't it? I just literally could scream with feeling so exhausted and nobody really gets it .

Sorry for the moan! X

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The definition of autoimmune fatigue is "tiredness that is not relieved by rest or sleep" - there are not only a lot of patients who get it, there are doctors too who get the theory. But I do know doctors who didn't REALLY get it until they developed an autoimmune disorder themselves.

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It's ok to have a moan.

And I totally get it!

I wake up most mornings, only to feel like I have managed at the most, a couple of hours sleep. And I don't have an 18 month old to contend with during the day, or night! Very understandable you feel tired. Fatigue seems to be the common denominator in autoimmune disorders.

You are most certainly not alone, that's for sure

x

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Not at all alone. I don't resemble a human being until at least three hours after I get up, and It's a long time since I had a baby waking me in the night. Please always feel free to vent here x

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I'm just so fed up of feeling so tired and exhausted. I literally am waiting til my partner gets home at 6.30pm so that I can go to be with my 4 yr old and 18 month old! Just feel that's no life to have. I feel I can't be much fun to live with being either exhausted or feeling ill x

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I feel the guilt too. Somehow we have to get past that. My husband is the best, but I still feel that I put too much on him. Hang in there. Try different meds. Mine is definitely better, but I tire quickly.

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lupus can make you tired but it is also possible to have other conditions that cause problems unrelated to lupus such as thyroid issues, sleep apnea, etc.

are you overweight? This can lead to sleep apnea and you might want to get a sleep study to determine if you have it. A doctor can recommend one or other tests to determine what is going on.

I was really super tired and thought it was my lupus but it turned out it was low thyroid and a vitamin D defiency, both common in lupus patients. I started on thyroid med and vitamin D pills and felt like a new person!

Ask your regular doctor to check for other things that might also cause tiredness and poor sleeping.

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I am slightly overweight but not obese or enormous or anything.

I've always had a low vitamin d and been on supplements but stopped a few months ago as gp said levels were ok. I will get them checked at my next monthly blood test tho. I've had my thyroid checked and has come back fine.

My partner said about sleep apnoea but I've never been concerned about that I had a sleep study several yrs ago for restless legs and nothing was picked up but that was a while ago so could have changed.

I am on about 11 different drugs a day so I suppose could be any of that too x

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I get it sarah.. it stinks...i feel like I never go into REM sleep. Its really strange. There are things you can do to help. I sleep a lot better. First get a mask to cover your eyes. Diffuser with lavender, lavender oil on your feet every night. Sleep and relax tea before bed. Has passionflower, lemon balm, chamomile. I use passionflower and lemon balm a lot for anxiety and depression. No side effects for me. Works wonders. Check with your doctor if you are on meds to see if ok to take.

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I get you completely. I can go to bed feeling exhausted but be unable to get to sleep for ages. Then I can wake up 4 hours later with a headache and take ages to get back to sleep again. Then not be able to get up in the morning! And I feel like I've not been to bed at all 🙁 And so the cycle goes ....

I really need to get better at remembering to take the tablets my GP gave me to help me sleep, because they do work; but it's a 'thing' that the brain fog ironically causes me to forget to take my tablets. People don't understand that either.

I need to set an alarm on my phone to remind me.

Sending hugs xx

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I completely understand how you feel. Fortunately for me, my children are grown up so if I wake up feeling that tired I just stay in bed and sleep on and off throughout the day.

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Hi Sara_A,

We have a blog article about managing fatigue which may be worth looking at (if you haven't seen it before). You can access it at lupusuk.org.uk/managing-fat...

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Warning... I need a moan!

Just said to my partner it would be good if sometimes when he knew I wasn't feeling great and exhausted that he could say 'why don't u go and have a rest or sleep while I'm home' instead of me feeling guilty that I need to say 'do u mind if I go have a sleep I'm feeling so tired'.

He's really good and I'm lucky he does understand but I just wish he'd sometimes suggest it so that I know it's ok as I feel so guilty.

His response to this was 'but you're always tired', well I just flipped my lid! And I've gone to bed as just don't want to talk to him now. I had a little cry this morning when he was out of the rm as I'm feeling so fed up and frustrated that I can't do the things I want to do.

We have been together 5 and a half yrs and have a 4 yr old and a 17 month old but I sometimes think it would be fairer on him if I was on my own (with the kids) but just not him. As I wouldn't have to feel so guilty about feeling unwell or exhausted to anyone then. I feel a lot of pressure I suppose and I don't want to anymore. I sometimes think if it weren't for my kids I may not be here as I'm so fed up of felling ill or exhausted everyday x

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