A long, hot, sticky night in flares, & I don't me... - LUPUS UK

LUPUS UK

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A long, hot, sticky night in flares, & I don't mean down the local disco for a 70's extravaganza.

roobarb profile image
11 Replies

I've always had night fevers & achy joints when my lupus flares, but last night was something new, & quite nasty. A bit like those purple flares I wore for a fancy dress party, way back in the days when I did have a social life. Not the real 70's I hasten to add.

Last night every joint was extremely painful, but my hands & wrists were the worst. They stiffened up & felt like each bone had been broken into a hundred pieces. I kept waking up overheated & in pain. Yet I didn't have the strength to get up for a pain killer.

To add to this, my eyes, nose & moth were bone dry, & I could feel sores forming inside my nose & mouth. I can't believe I managed to sleep through most of this, but I did. Needless to say, I feel pretty ropey today, but the joint pain & fevers have calmed down. The little red dots I noticed across my cheeks this morning have gone too.

What is it with this wicked Mr Lupus, that things can change so quickly, & why does everything feel so much worse at night? That's a purely rhetorical & frustrated statement, dear friends. I know when we have the answer to that, we'll be on the way to a cure.

Roll on nephrologist appointment on Tuesday. If I get the all clear from him I should be able to start methatrexate. Hopefully that will give me some relief, without too many side effects.

Fingers firmly crossed.

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roobarb
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11 Replies
Purpletop profile image
Purpletop

Every time I experience sudden lupus activity I imagine these little soldiers in the body, all aligned and armed, ready to fight. Who knows what got them mobilised, we don't know much about our bodies, such complexity is amazing.

A least yours managed to leave you alone today, roobarb, good luck at your nephrologist!

twist1 profile image
twist1 in reply to Purpletop

I know what you mean purple top but I imagine them fighting a civil war!!!

roobarb profile image
roobarb in reply to Purpletop

Hi Purpletop, it certainly does feel like a war in our bodies! Nights are the worst for me at the moment, & I'm not the only one looking at some of the other posts.

Thanks for your support, I should know where I stand with potential meds this time tomorrow. X

twist1 profile image
twist1

Oh roobarb, I feel your pain, I remember nights like that I usually leave the radio on to give me company every time I wake up. Got hot sweats myself at the moment feel clammy all the time. But I know this too will pass I just have to wait it out. I just try and enjoy the good days when the come and give into it when I have to. I sometimes feel a bit like icabod crane from sleepy hollow. I hibernate and things move on then I have to catch up with everything I've missed, it's amazing how I do it without even thinking about it now.

roobarb profile image
roobarb in reply to twist1

Thanks twist

Hibernating sounds like a good option to me. Especially now the sun has started to shine & is making me a bit nervous because I reacted so badly to it last year. It's sad that we have to hide our selves away. But we have to be adaptable to cope with this illness.

Take care, & thanks for your support. X

Sher78 profile image
Sher78

I got all excited when I saw the word 'Disco' so imagine how disappointed I was when there was no fantastic music, funking & bright lights when I clicked on it :(

In all seriousness, sorry u're having such a sh*t time honey, lupus likes 2 remind us (as if we bloodywell need reminding!) that it's always there & can b extremely savage & debilitating if it so chooses.

Big hugs & fingers crossed 4 a good outcome Tuesday x

roobarb profile image
roobarb in reply to Sher78

Sorry for the disappointment Sher! Lupus flares are the closet I get to any "grooving" these days.

Thanks a million, & roll on tomorrow. X

Sher78 profile image
Sher78 in reply to roobarb

& I was all ready 2 dig out my afro wig & platforms too ;)

U have given me an idea now; next time I start 2 have spasms or twitches, I'll stick on some tunes! That way people will just think I'm 1 Hell of a dancer & will not start backing away from me thinking I'm some mental case that needs restraining!

Let me know how u get on x

roobarb profile image
roobarb in reply to Sher78

Sounds like a brilliant idea Sher. I will hold the mental picture of you bee-pooping around. Classic!

I got the all clear for my kidneys, woo hoo! So protein allowed again & hubbie cooking up roast chicken to celebrate. But lupus markers are more active. Next step rheumatologisit in 2 weeks to decide on meds.

Sher78 profile image
Sher78 in reply to roobarb

Excellent news! Just make sure u don't put u'reself in2 a protein induced coma in all the joy ;)

DaleDiva profile image
DaleDiva

Must be the season for night sweats.... I have been having problems this week as well :)

Loving the idea of the little soldiers and the Civil War!

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