Why am I constantly tired all the time? - LUPUS UK

LUPUS UK

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Why am I constantly tired all the time?

Danielle2419 profile image
3 Replies

I wonder if any one can help by giving advice and sharing your thoughts and experiences with tiredness.

Im a 19 year old girl with lupus and APS and am in remission at the moment. But i feel so tired throughout the day i wake up in the morning say 9 o'clock or so then maybe by 2 o'clock I want to sleep again and i drift of for 2 hours every time. I should be active now im in remission and recently started an apprenticeship but fell asleep during training for the job and was told if i cant take the job seriously then i shouldn't be on the apprenticeship so i quit because i didn't want to be judged as a lazy person no one understands im not lazy i just feel my body weak and my eyes closing then my brain says go to sleep and im off again. Even family judge say why you going asleep all the time its only my partner who sticks by me so please help all advice appreciated.

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Danielle2419 profile image
Danielle2419
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3 Replies
field profile image
field

Lupus fatigue is one of the most difficult symptom of lupus I have had to endure over the years since I have had lupus,so I understand how you might be feeling. My fatigue is so bad that I had to quit my job. Even after over 17 years of having lupus I still battle every day with fatigue. I have to constantly pace myself otherwise I get exhausted. I have tried a number of medications but nothing seems to work. I have been told I just have to live with it. Not every one with lupus experience the same level of fatigue, some find certain medications help to relieve fatigue symptoms. Talk to your rheumy about your fatigue and see how he/she might be able to help. Over the years I have learnt the best way to cope with my fatigue is to pace myself, listen to my body for signs that I might be going over my threshold and rest before this happens, and not to worry about what others think of me because I am the only one who knows how I am feeling. As for your job, have you told your place of work about your illness? it is very important that you do this so they understand your position and give you the support you need to carry on with your apprenticeship. Don't be afraid to ask for help it could make the difference between continuing your apprenticeship or having to quit.

All the best

Mainshah profile image
Mainshah

Hi metoyou

I'm exactly the same as you I wake up at half 9 or so in the morning do the house chores ad by 12/1 o clock I'm so tired I wona slep ad I nock out for 2/3hours everytime, I not in remission at the moment my lupus it very active and started aza to witch is awful makes me sick everytime, the only thing I'd say is when ur tired just slep it's part of the lupus and no one will understand it until they have it, coz I'm in the same boat as u noone understands, it's always the same stuff u look ok and y u sleeping all the time.

I was so depressed afew days ago I was Gona take an overdoes of painkiller luckily I had Sumone to talk to.

Stay strong

Slowmo profile image
Slowmo

Hi metoyou, fatigue and tiredness are a battle and something we hope will improve with treatment, it must be especially hard for you given your youth and how it's affected your training. If your body needs rest and sleep then you can only give into it at this time, as fighting it and making yourself totally exhausted won't help in the long run. So maybe for now, take it easy, rest when you need and discuss with your consultant at your next appt.

Can I suggest to mainshah that you discuss the sickness caused by Azathioprine with your GP or consultant, it's worth a ring as I was recently taken off AZA due to sickness, I was told nausea is to be expected but being physically sick means your body is not tolerating the drug.

All the best.

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