Just wondering what experiences my fellow "lupies... - LUPUS UK

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Just wondering what experiences my fellow "lupies" have had with fatigue?

Rockhopper profile image
2 Replies

Recently, I'm finding that overwhelming bouts of fatigue are coming on very quickly and within an hour, I feel like my whole body is a lead weight.

If I am at home I can lie down or go to bed and sleep but obviously it's more difficult if I'm out with family or friends and also difficult to explain to them how I feel.

How do the rest of you cope?

Wishing you all a "good day"! X

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Rockhopper profile image
Rockhopper
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2 Replies
tinkey profile image
tinkey

Hi rockhopper!

I too suffer with extreme fatigue. I sometimes cope and other times I don't, breaking down in tears and feeling desperate. I call it 'tears before bedtime' as it reminds me how my children used to get when they were exhausted after a full on day. I have begun to cope by not working, a very hard decision to make and pacing daily activities. I have learnt to say no to people. I'm lucky my husband reads me like a book and knows when I'm exhausted. He also can tell when I'm in pain and he will give me painkillers, which can help with my fatigue. Other friends and family find it difficult to understand, but I just remind them how active I used to be and they know I'm not a 'lazy' person. I've learnt to try and not worry about what other people think, because you know your body better than anyone. If your body is saying it's exhausted then rest. Just by putting your feet up for an hour can help me. I try to structure my day and give myself regular breaks, where I sit down and rest. I wish you well :)

Jasmine0505 profile image
Jasmine0505

When I need to lie down I do, if I'm out, and get hut with serious fatigue I get hone as soon as possible. If I don't try to fight it, I have noticed that my mind gets loopy. When you need to rest do it. I have found that my will to fight the symptoms lose. Good Kucj

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