Is excessive sweating normal with lupus I am wet ... - LUPUS UK

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Is excessive sweating normal with lupus I am wet through on my face and head most of the time.

KarenC profile image
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KarenC
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kittykat68 profile image
kittykat68

Im like that I thought it was the meds??

jmeerkat profile image
jmeerkat

I also suffer with this to the extent that I have dripped on people and look like I've just come out the shower. I have to say though that since I've been on mycophenolate it's not been as bad although still do get at times x

nanaber profile image
nanaber

Strange you should ask this I was thinking of asking the same question myself. I get periods of excessive sweating I think I'm noticing it happens at or just before a flair it will be interesting to see what others think

dgleds profile image
dgleds in reply to nanaber

I sure had night sweats last night and today felt pretty crummy...I made sure to drink more water....I ached more for sure...

Still not sure if lupus or post menopause stuff.,.both make u sweaty!

mstr profile image
mstr in reply to dgleds

That's exactly what I was thinking dgleds......is it lupus or menopause. To be honest it usually comes on pre flare and I use it as a bit of a warning and take it easy for a few days and take paracetamol to bring down the temperature. So lol if it is really the menopause and I've got it all wrong!

dgleds profile image
dgleds in reply to mstr

I think a lot of this stuff crosses over, lupus/menopause,..even thyroid for some. I don't seem to get a fever(hmm maybe cause Im hypothyroid too?) Ive got my window wide open at night...less and less blankets...Your onto something with sweats and flare coming, because I do ache next day after the sweats..I just never know if Im aching due to lack of my hormones etc, or dehydrated from sweating, or mild lupus.....Or all three?

mstr profile image
mstr in reply to dgleds

Ha ha I guess we will never know for certain. I know I am throwing the windows open lately a lot.....most women just blame the menopause lol....we have lupus to blame too xx

dgleds profile image
dgleds in reply to mstr

Like the "Wicked Witch of the West".....I'm melting....;)

wotshernameagain profile image
wotshernameagain

I have noticed also but have not brought it up to my GP or my Rhumey as i thought it was all in my head.. I'm begining to realized there is no such thing as in my head lol!

dgleds profile image
dgleds

that's ok...some doctors don't seem to think menopause changes much...(well men doctors)...My Rhumey never even asked anything about menopause..who, what, where, why or when??? Guess that's in our heads too...

georgie63 profile image
georgie63

I've also been the same for years now, although I was only diagnosed last year with SLE. I drip and look like I've just had a shower, and was asked to leave a clothing store !! Its even more embarrassing when I'm in the supermarket, and the other week there was a child in a trolley who spoke in a very loud voice "that lady is dripping like my lollipop did the other day, mummy" !! I had nowhere to hide.

dgleds profile image
dgleds in reply to georgie63

night sweats mostly for me....although my top lip sure sweats...now if I grew a moustache(no just kidding)...

I have suffered this problem since 2000, when I was put onto steroids, I to have comments about just come out the shower, but it is awful, as my hair can never look decent, and if I drink any thing hot, eg:tea, its even worse. I walk round with a small towel all the time to mop my face and neck, and my GP asked me if it was my comfort blanket!

From my shoulders down, I don't sweat, but I do suspect steroids, which I cannot get off, so it's wet hair styles for the for seeable future.

dgleds profile image
dgleds in reply to

I cant take steroids....I actually almost like hallucinate on them,..plus things get louder and brighter. Im sure I would also eat the paint off the fridge door I get so hungry on steroids...I know they certainly help some people...But I know that sweaty feelin, and I can sure sympathize...

GEISHAGAL profile image
GEISHAGAL

I could never find out about anything to do with Lupus and sweating. But I am also B-12 deficient, that causes sweating. Have your levels checked.

dgleds profile image
dgleds in reply to GEISHAGAL

is that like a niacin flush? Although I don't think B12 is the B vitamin that gives the flush...My Mom had to have B12 injections come to think of it...Its different for everyone...

willowwag profile image
willowwag

Hi all i asked my rhumy this question at my last app, she said lupus sufferes some retain heat in there body and cant regulate their body temp.. Hope im explaining it right lol...when we get hot our body retains the heat and sweats and sweats,, most people sweat to release body temp...when it warm and humid or when doing anything i feel like im burning up from inside...she said this is normal to see this in sle patients hope this help all..she told me when im over heating eat a tip top on a ice lolly to cool my blood from the inside out...x

dgleds profile image
dgleds

arggg so over heat with lupus...cold with hypothyroid...and hot post menopause...must be a friggin war going on inside my body..lol....

KarenC profile image
KarenC

Thank you all, will get b12 levels checked. Probably the steroids trying to reduce dosage slowly, so will have to see if it gets any better. It's just so embarrassing, but better than constant pain.

Purpletop profile image
Purpletop

This topic comes up every so often, it is now clear that most of us suffer with the same thing.

The body temperature is controlled by the autonomic system, the same system that controls our heart beat, the way our stomach muscles coordinate to move food through the digestive system, that kind of thing. Lupus tends to affect this system, which is why when lupus is active some things seem go out of kilter, e.g. excessive sweating, heart palpitations, digestive problems. Some drugs also affect the temperature regulation, steroids being one of them.

Doctors will only worry about the excessive sweating if your body temperature during such a heavy sweating episode increases above your normal one. An increase of temperature can mean infection and many other things that have to be investigated as soon as possible but no increase in body temperature isn't something they tend to associate with serious problems.

Next time you have an episode of overheating/sweating, take your temperature and compare it with your normal one (take your normal temperature in advance to have a baseline, making sure that you use the same thermometer and same method (I.e. In the ear, which is best, or under arm, or mouth, whichever thermometer you have) for both so that you have a 'clean' comparison.

If your body temperature is higher, tell your doctor. If it isn't, your doctor will say is nothing to worry about - hm, they haven't been in our shoes to see how it feels.

But if you do have this constantly, ask your rheumatologist whether your lupus is indeed sufficiently controlled. It may be that the medication you're on is not at sufficient levels. On the other hand, as I said before, be the medication itself could be causing it.

sazzyb profile image
sazzyb in reply to Purpletop

What an interesting topic and a really interesting reply Purpletop, thank you. My previous GP and my current one both suspect I have Lupus but nothing showing in blood tests (I do have Sjogren's and hypo.) This sweating topic caught my attention because it's something that suddenly started happening to me about 10 or 12 years ago. (I'd been through an early menopause by that time.) Having always felt the cold, suddenly out of the blue rivers of sweat started running down my face. At the time I was a volunteer at a local charity, and as soon as leaned over a desk out poured the sweat even more. I didn't go to the doc's, just kept telling myself it was my silly hormones. I remember getting home in the evenings and feeling ill, and shattered. (Still feel ill and shattered but hey ho.)

Purpletop profile image
Purpletop in reply to sazzyb

Lupus isn't showing in my blood tests either (other than positive ANA) but that didn't stop my rheumatologist diagnosing it on the basis of symptoms. However, autonomic dysfunction can be caused by other autoimmune conditions, sjogrens being one of those.

As autonomic dysfunction manifests itself in different medical specialisations (cardio, gastro, neuro), no one doctor seems to focus on it. Rheumatologists should be aware of it but many put it down to the autoimmune disease and leave it there as long as symptoms are mild, e.g. Excessive sweating. Particularly because there is no treatment per se. If the symptoms get more serious, then they refer to other specialists.

sazzyb profile image
sazzyb in reply to Purpletop

Ah, thank you, so it could be the Sjogren's. I've never seen a rheumy, only for carpal tunnel some years ago - oh and for preliminary tests for suspected Myasthenia, years ago too. (Muscle weakness and ptosis - still got that, it's a nuisance.) My GP seems to deal with everything.

traceymcx profile image
traceymcx

Really glad you brought it up i too have excessive sweat dripping off my face and have nearly dripped onto people feel so embarressed sometimes, i also ache too have not menioned to Gp he doesnt understand lupus i think i know more about it than him. Its good to come on here and read other peoples experiences at least i know im not going off my head although we told it its so wrong they should come on sites like this and realise what us luppies go through they might learn something.

Tracey1234567 profile image
Tracey1234567

Why does b12 make you sweat

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