Weak, faint : Does anyone else here have days or... - LUPUS UK

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Weak, faint

poodlegal profile image
8 Replies

Does anyone else here have days or even times during the day where u just feel so unwell so weak, dizzy, heavy legs ? I know heat has a lot to do with it and the weather is lovely but I just feel crap same yesterday but came round about 6pm then same all day today

I have felt like this off and on for years

My question is why ?? What exactly is the lupus doing to make us feel like this

Sometimes even walking for two minutes leaves me like I've run 10 miles

Xx

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poodlegal profile image
poodlegal
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8 Replies
whisperit profile image
whisperit

Chronic, severe, fatigue has been my biggest problem. In the worst episodes, I also get sweating, nausea and shaking.

For me, there is a definite daily pattern, which I suspect is linked to the natural cycle of cortisol levels through the day. Both my wonky immune system and the meds I am on must affect this. I should say that none of my medics agree with my theory - but neither can they offer any other explanation, or any way of stopping it happening.

Part of the reason I am keeping a diary of symptoms is to see if I can get to the bottom of it - or at least work out better ways to manage it. It'll be interesting to read other people's thoughts x

1sam profile image
1sam

I guess there could be many things ... stairs I can handle but climbing or simply walking small hills leaves me panting like a dog. Not glamourous.

Drs say it could be the low hemoglobin levels I have, how are yours? Have you talked to your GP/specialist about this?

Sam

poodlegal profile image
poodlegal in reply to 1sam

Yes red blood cells are good it's the white ones which are low

I came round again at 8pm and feel I could dance the night away now

Maybe it's me my mum always said I should of been a owl lol xx

Cas70 profile image
Cas70

It could be low blood sugar, eat a banana and drink a glass of water- that works for me.

Buffy14 profile image
Buffy14

Could be low blood pressure I ended up in hospital last weekend after fainting in a pub , they said it was a vasovagal attack which is a sudden drop in blood pressure , i often feel week or faint i think i have low blood pressure a lot , stupid thing is i am on tablets for high blood pressure , well i was I've stopped taking them for now until i see my consultant again

1sam profile image
1sam in reply to Buffy14

Those drops are awful, lucky you didn't get hurt badly.

I hope you be sent to a cardiologist, it took a number of tests to diagnose me with vasovagal syndrome ... anyway I'm taking meds for that (beta blocker) and for lowering blood pressure. I think my rheumy said vasovagal nerve could be affected by lupus... there are some articles on the subject.

Good luck!

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Unfortunately fatigue in lupus is still very poorly understood and so we don't really know what causes it at the moment. This is why a lot of the time people can have very low lupus activity according to their bloods, but still be experiencing severe fatigue. There is some exciting research into fatigue in lupus going on at UCLH which is funded by LUPUS UK. They should be publishing some early findings soon and then hopefully expanding their studies.

If you haven't seen our blog article about lupus and fatigue you may find it helpful. It includes some tips on managing it. lupusuk.org.uk/managing-fat...

GERY profile image
GERY

I CAN RELATE TO THIS BUT ONLY AS I HAVE GOT OLDER. JUST HAVE TO GO TO BED AND LIE DOWN. SHOPPING FOR HALF AN HOUR FEELS LIKE I HAVE RUN A MARATHON. WHY THIS HAPPENS I DON'T KNOW JUST LUPUS I GUESS

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