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
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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
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
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.
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...
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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