Does anyone else overheat after exertion? - LUPUS UK

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Does anyone else overheat after exertion?

saranne profile image
13 Replies

I can start to get hot, red face, feel like I am burning up inside etc. then I can't cool down. Next I feel ill, a bit dizzy, tearful followed by by being nauseous and very tired. Not menopause as I am 60, but seems to happen after I have needed to put energy into an activity, starting to get very embarrassing!

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saranne profile image
saranne
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13 Replies
Barnclown profile image
Barnclown

Wish I could think I can be helpful, but my version of this seems less severe than yours. My version affects my hands, feet, head (generally inc ears) and to one extent my neck & chest

Like you, I'm 60, and my version isn't menopause-related. I'd say it has been most acute & persistent since 2008

In 2010, a rheumy tried me on nifedipine for raynauds, which made these symptoms go ballistic

So far, my drs think my version is mainly erythromelalgia secondary to SLE. I started hydroxy 400mg in 2011, which only slightly damped my overheating symptoms down. Low dose pred tapers maybe also helped a bit. Now I'm trying myco....only on 1000mg daily....seeing no improvement in the overheating

Hope you do get some helpful replies

hazelHollingsworth profile image
hazelHollingsworth

Oh boy do I ! Water just Runs off my head, sometimes it get so bad I have to sit with a Bath towel round me and take Everything off apart from my panties. It is SO embarrassing when I am out for a meal or with friends. I carry a roll of Kitchen roll everywhere I go (Torn into sheets so they fit in bags pockets Etc - even Hubby's pockets) I have been asking the doctor about it for years, first it was 'my age' (been hearing that for the last 50 years!) then it was the 'Lupus' Now it's my medication! In other words no one knows and as I am 67 No one give a 'whatever'! I have ICE packs wrapped in the freezer then wrap them in a towel and put that on the back of my head (they are the ones you can microwave for heat as well). Oh dear there was a time when my hubby bought me sexy underwear, now it is Heat Pads and Coolants. He found me a spray (it is what they use on footballers it is called Masterplast Freeze - we buy it on the internet) and that is good when the Pain in my legs just gets to bad for me to get any rest. I do hope one of the things I have mentioned has helped, there is always the Cool shower to fall back on - I sit in a coolish bath (Can't stand long enough to have a shower) and then just spray the shower over my head - then go and lay on the bed on a towel 'till the 'HEAT' has passed. Good Luck. Hazel.

forgetfull profile image
forgetfull

Omg. Just seen this! I too I'm like this ! Since march last yr! As soon I do something I start sweating it just runs down my face, my hair gets soaking like I've just stepped out the shower! Its so embarrassing! It has stopped me doing most things! Even going to the supermarket!! My doctor for 8 months was convinced it was my hormones as I'm on hrt!!tried different tablets nothing stopped it! Then after I weeks course of antibiotics it disappeared for about 7 weeks but now it is back! I'm at hospital on tue so hopefully I will get some answers! Just want my life back!! X

janann profile image
janann

omg so do I. It's bizarre. Even my scalp sweats.. I thought it was just a symptom of my S.L.E. I also can go very cold which starts from my feet and travels slowly up to the top of my head. I find I dehydrate if I am not careful as my last kidney check showed they were dehydrated. If anyone gets a good treatment for it please post it. x

forgetfull profile image
forgetfull in reply to janann

Hi janann, its good to know I'm not the only one! I was diagnosed with disciod lupus 2008! But my last blood test showed my ANA went fron140 to 320! So something has changed! I do believe its like we have a infection and as soon as our body get a bit hot its like it starts to fight it and goes into over drive! I will let you know what the hospital says on tuesday! If they can't come up with anything I'm going to try a another course of antibiotics and see if it works again! X

Slowmo profile image
Slowmo

Hi there - ditto! I have suffered with these hot bursts for years. I'm 45 - diagnosed SLE 2010 and have suffered these heat things for years and years..... I feel exactly as you've described, including feeling weepy, a bit faint and almost drained. My partner how says I'm having a 'whoosh' as she says it's like everything drains from me and I go to look dreadful too.

I absolutely hate it, find it totally embarassing, especially since taking high doses of prednisolone I have gained a lot of weight and feel that people look at me and think - oh that fat bird is sweating so much cos she's so fat!

I too would be grateful for any answers.

Take care, and you're not alone - imagine if we all sat together -what a motley crew we'd look like, lol.

caninecrazy profile image
caninecrazy

me too! last year was the beginning of them,summer was heel, anything over 19 degrees and its as if someone has turned a tap on on my head. it it very embarising to say the least. its beginning again today. I was tested for early menopause (im 41) results ok, nurse said it becoz im fat, its lupus, its menopause again........ive gotten no where. I will kepp reading everyones answers as im desparate to control this x

KathinAyrshire profile image
KathinAyrshire

Dear Sarane

Me too, it's not only from exertion, also just sitting doing absolutely nothing!! It is definitely absolutely positively nothing to do with menopause (I'm 68 and had a hysterectomy at 32) it has everything in my case to do with Lupus. The worst thing is that there is really no warning to excuse yourself from company and stick a towel round my head where it is most visible.

I have yet to receive any advice from either gp or specialist so can't really help on the solution front but just to say you are not alone. So far as the nausea and tiredness I have found that a large sugar hit can help, in the form of sweeties and that's my excuse! I wish you well. Kath

saranne profile image
saranne

Thank you all for your experiences, its always good to know you're not alone! One way I seem to differ is that I do not sweat at all, not even underarms! This could be one reason why I cant cool down? The description from slowmo 'hot burst' is apt, I am only on 5mg pred. now so can I blame the meds? I think that when I need energy I 'find' some but my body just keeps on going even when there is no energy left...like the overdrive forgetful describes, my ANA was high too!? The problem is having to deal with it at work without seeming odder than I do already! Thank you all x

lupylooe12 profile image
lupylooe12

I have a leaky head too. Very embarrassing because you go so red as well. I told my doc and she said " oh yes I've heard other sSLE have that too" . Very helpful, another just cope with it diagnosis. I don't take steroids as I also have diabetes n it shoots my sugar up too high. Guess we just continue to put up with it. Anyone who gets an answer please post.

ulsterchick61 profile image
ulsterchick61

I am just amazed about this post, I have had the 'sweats' for years and I just 'leak' as well, I find it so embarassing and have been told for years it is menopause, I had a hysterectomy 9 years ago and thought i was having the longest menopause in history!!! At least I know I am not alone, this site has been invaluable since my diganosis 2 weeks ago I am getting great support and comfort. I saw my GP today and told her and she was just wonderful and is going to get in touch with the dermatologist who diganosed me 2 weeks ago for an update and see what she can do to support me!! So not feeling so worried as i was 2 weeks ago, thank you everyone for your support, carol xx

saranne profile image
saranne

Glad you found this site ulsterchick, its been so useful to me, there is always someone who understands on here! good luck with your appointments x

forgetfull profile image
forgetfull

Hi all, I was at hospital yesterday! And showed the doctor photos of the way I get with the sweats and redness! And as soon as he seen them he told me its a lupus rash! I had bloods took and I'm back on friday to see him so will. Let you know if I get anywhere .

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