I see there's a five year old thread about his so thought I would start a new one. I've not been diagnosed with Lupus but I have overlapping symptoms and have been diagnosed with Fibromyalgia and ME - as well as hypehidrosis (something I had to push for). The type of hyperhidrosis I have is secondary, which means there is another primary condition causing it, and it may have been triggered by menopause but most people with menopause have hot flushes and not cold sweats. Yes, mine are triggered more in the cold weather and I'm not alone as I've discovered on Facebook! It is one of the most debilitating symptoms because on top of fatigue, paint and anxiety it really puts the tin lid on going out especially in the winter. All my clothes get soaking, I have to take several changes of clothes and the record was changing nearly 30 times in one day. That was a one-off (I had a virus at the time) but I have done twenty times not so long ago. Also get night sweats but feet will be dry and cold, while adjoining legs dripping and clammy. Sweats all down the central region. I do sometimes take the meds prescribed but if I take too many I'm swapping one lot of problems for others e.g. raging thirst and more migraines.
I am taking extra Vit D and Vit B12 but not making a difference. Thyroids 'within range' even though I'm colder than everyone else.
But is excessive sweating something any of you recognise as being associated with Lupus?
Many thanks
Moggy x
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FoggyMoggy
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I’ve always had difficulty with excessive sweating as well as excessive urination. Seems as though I’ve always struggle holding fluids for some reason. Diagnosed with mctd and containing several lupus symptoms a few months ago. Since taking plaquenil, my urination rate has reduced by 25 percent or so. . Not noticed any improvement in sweating yet though. However, my heavy sweating normally occurs on warm days which I have not had any since diagnosis. During exercise, it appears my sweat rate has not reduced ... yet... so I am thinking the sweating is not related to lupus. However I probably won’t really know for sure until the weather heats back up and more time on the meds as it can take several months for certain conditions to improve
Thanks looy4me. I always suffered from frequency right from childhood and that was inherited. But since I've had Hyperhidrosis for the last 6 years the sweating has an inverse relationship with urination! That makes sense to me - I'm sweating moisture out of my pores rather than the usual way! That is the only advantage of it, I don't need to go to the loo so often. The tablets I take for HH are in fact also used for people with bladder problems
That sounds dreadful for you. Have you seen an endocrinologist? Hormones can play a role n this and you may need to take some form of HRT.
My Lupus (which I probably had for some years previously) was triggered by the birth of my 3rd child and I feel my hyperhidrosis (face and scalp) became worse after menopause.
Thanks SH55 and sorry to hear you also suffer with hyperhidrosis. I didn't physically 'see' an endocrinologist even though I asked to be referred to one but he did recommend a batch of tests for my GP and the hospital to do to rule out adrenal issues and these were ruled out. My first thought of course was that it was because of the menopause, although most people have hot flushes not cold sweats. I tried HRT patches for 3 months and they didn't make a jot of difference (I can't take the pill because of blood pressure problems in the past).
Usually people with HH are referred to dermatologists so I may ask about that seeing as I'm getting more rashes although maybe that's a side effect of my HH meds.
I've also posted a new post about my hot flushes / sweats ... I was said to have mild SLE over 25 years ago but that's unsure now .. I do have APS and fatty liver and many other illnesses
I have severe Hot flushes with awful sweating .. They came on in ONE DAY I had not had any before including not one in the meanapause .. the FIRST DAY
I had them I had 96 in 24 hours day and night .. every 15 mins .. I now have between 48 and 96 every 24 hours this has been constant without any let up for nearly two years .. I can't take any meds at all including natural due to otherds and conditions.
We've had to have strong ceiling fans installed and I use hand fans too
I am definitely post meanapause and didn't have one hot flush during menopause.
My hot flushes are so severe and have changed my quality of life totally
They started on 1 Dec 2017 .. never had one before that .. woke up that day and had 96. I have 2 to 4 every hour day and night
Been two years trying to find why
I have APS and other illnesses .. still searching for the cause
My thyroids been checked including auto immune thyroid ...I've been looked at for carcanoid tumours .. I have a fatty liver but had that years .. APS .. possible Sjogrens waiting for rhemy appointment ... beginning of Last year my ferritin was normal 20 it shot up by August 2018 to 581 GP didn't follow up so it wasn't looked into until Sept this year .. it's not hematomacrosis
I really feel for you I really understand how it is so life changing XXX
oh so sorry diww1 . That is completely debilitating for you. The most I ever had was 30 changes of clothes nearly 3 years ago (excluding the night) and that was distressing enough. Occasionally I get in the teens on a bad day, I have never heard of anyone having more than me. What is APS? That may be a condition that someone else posted on a different thread.
Mine came on more gradually, started in the few years before menopause, but I'd never had abnormal sweating before that. Can low ferritin (or high ferritin) cause hyperhidrosis? As I say mine is much more related to cold which is so contradictory. So winter much worse for me. A ceiling fan would trigger mine, I have to have a hair dryer and heating on all the time. Today someone delivered some groceries, door was wide open, and the cold air came in and triggered sweats and then the anxiety around it makes it worse e.g. when I have to go out.
Most people who have hyperhidrosis see dermatologists (I've not see one) but I really hope they find out the cause for you - it is totally intolerable. There is a hyperhidrosis UK society who have some information. Sending you all healing wishes xxx
Interested in this! I am mild compared to you, am 66 and well past menopause, but this has worsened in the last 10 years.
Like you I pour with sweat in cold weather. If I go out in a frosty day I will very soon be totally soaked in sweat and have to change vest, even bra when I get home.
I had few hot flushes at the menopause but now it makes the winter cold miserable.
I do notice when my doses of steroids are higher it disappears!! So it must have its source in the autoimmune mess.
I see endocrinology today, waited six months and saw them 6 years ago with adrenal insufficiency.
Will be interesting what they make of it all ,if I find out will report back. Mind you they will probably run the usual battery of tests which will frustratingly be normal!!
I was very interested in your reply and your experiences too. I know just how you feel in the cold, it is utterly miserable. I'm not saying I never sweat in hot weather but it is actually less and also if I do it doesn't feel so awful walking around as it does in cold and wet. But the temperature has been very hot and no sweats! So it's definitely something that is triggered much more by the cold and also I've noticed if I go from a warm room to a colder one, or if I sit in draughts or someone opens a window. Washing my hair triggers it big time, usually after drying my hair (which is very thick) but I can still feel the cold at the roots of my hair until the following day so have to lie on a hot water bottle! Baths too - I can't have them except in the very hot weather because once I've got out of the bath I don't feel dry for ages and that triggers sweats too.
Yes I never had problems sweating until four years before my menopause (which was very late). I'm now 60 and post-menopausal by two years, so total of six years with this problem. In the last few years it's been worse because while for the first few years it was my top half only that got wet, since then it's my bottom half/legs too, so I need a whole change of clothes. I need to wear a lot of layers in the winter (in fact more than most people all the year around unless temp gets above 75 degrees!) so wearing fewer layers doesn't help at all. Having a regulated warm temperature does.
So have you been diagnosed with Lupus? Can I ask your other symptoms? I am interested that you mention adrenal insufficiency because early last year an endocrinologist via my GP advised to run some tests to ensure it wasn't a problem with my adrenals - one was a 24 urine test, one an X ray and another a CT scan. The tests didn't show anything but I did notice previously with blood tests that my Cortisol - which was borderline high - had gradually been going on a downward trend and seemed to be just within range at the lower end, the last time it was taken - but then tests stopped so I wasn't able to see if it continued on a downward trend to rule out adrenal insufficiency. Can that cause excessive sweating?
I am also interested to know that steroids, a higher dose of them anyway, have helped with your sweats - I've never been prescribed steroids yet...
Yes, do let us know how you get on with your result. Maybe feed back on here in case I miss.
I have not been diagnosed with lupus yet but a connective tissue disease of some kind! It has been many decades in the diagnosis!! My Dad had Ulcerative Colitis and they think there is a link.My blood tests are usually normal except from ANA and ESR.
More worryingly it has morphed into some kind of vasculitis in the last year and I have had three strokes and a possible fourth. It also seems to be affecting the heart.
Since the vasculitis the medics are all sitting up and taking notice as I was not ever a candidate for strokes with low cholesterol, normal BP and little plaque in arteries but I have suffered from angina for fifteen years. More recently, in the last eighteen months pericarditis has been troubling.
I saw the endocrinologist on Tuesday and he did a battery of blood tests but says I have Secondary Adrenal Insufficiency and not Primary as they previously thought.
He thinks my cortisol levels are running low just now due to suffering constant severe pain due to three slipped discs! I am awaiting a steroid injection into the disc planned for January. An operation would take a further year of waiting on the NHS, we may have to re mortgage our house yet and pay for it!!!! I really could not bear another year of this!! The discs finally went after a fall in April.
The endo told me that my higher morphine use since April could be pulling down my cortisol levels and giving me several dips throughout the day. He has asked me to take small extra doses of Hydrocortisone to get it under control.
When levels are low I sweat profusely from the face, it drips onto the floor. This is different from the sweating reaction in the cold which happens I think whether cortisol is low or higher.
I asked endo about the sweating but he noted it down and said he didn't know why the cold affects me this way!
I wonder if it is a response to cold stimuli perceived as a threat to our broken immune system. It over reacts so we sweat. Goodness knows!! It is so massively frustrating not to feel “ normal” anymore!!
It is interesting however when my steroid level is at its highest this sweating reaction in cold is much less!!
They have been trying for many months to get me onto a DMRD. We tried Azathioprine but I had dire side effects. Now Methotrexate injections are planned for after Christmas, fingers crossed. The grand plan is to reduce the steroids very slowly.
Problems is I am massively drug sensitive!
Sorry I cant suggest more of a reason for our sweating, but it does make life pretty miserable on top of everything else!
Thanks for your reply cuttysark . I'm really sorry to hear about your strokes and vasculitis affecting your heart I feel really saddened and angry too when I hear how long such conditions can take to be diagnosed. I know many conditions can take a long time but decades is just inexcusable.
Very sorry to hear about your pain after slipped discs too. Yes, the NHS has been so underfunded, everything is taking too long - I am trying not to get political which is very difficult for me!!
I am interested anyway in the link between hydrocortisone and profuse sweating, and of course I guess any variations in morphine can cause excess sweating.
Yes too many people and endos just say they don't know why we sweat when we're cold and then pass on to the next thing as if it is no big deal but has huge impact on our lives!
It could be our broken immune systems, as you say, or broken thermostats. Maybe it's to stop us over-heating! Who knows?
Anyway, it;s slightly milder to day and I am very sensitive to a slight rise in temperature (in a good way!), in the same way as I am too sensitive to a slight drop in temperature which isn't so good. The bigger the drop the worse I feel!
My doctors who found lupus ( im new in the pack) told me that my very !!! sweaty palms and feet are due to parasympathetic nervous system which is directly linked to both lupus and kidney function ( hence urination frequency sweating etc). I do get cold sweats right before my period due to hormonal changes. Probably wont have flashes too in menopause but cold sweats instead. I try to drink a lot of water, plenty of fruit and vegetables and minimal animal protein and salt to keep kidneys clean.
Hi Coffie, that's interesting. So hyperhidrosis is connected to Lupus then. Well, the parasympathetic NS going awry anyway. I don't get the sweaty hands and feet, which is usually more symptomatic of primary hyperhidrosis, I hear, and begins at a much younger age as a rule, whereas secondary HH, usually later in life. Mine affects the central region mostly, head, neck, trunk and limbs but not hands, feet and armpits!
Re kidney function, I have always suffered from frequency since childhood (I think inherited from both parents) but since getting HH I sweat it out so urinate less frequently, which is the only upside. I don't mean I don't go but I can last out for much longer. I eat a lot of fruit and veg and don't eat meat. I do have to drink more though because the meds taken for HH can dehydrate me
Oh I do feel for you - I suffer in the extreme heat but not when cold - you poor thing.
However, I am not convinced you do not have a thyroid problem - to me this sounds like the temp regulator is out due to not enough hormone - I too had problem with my thyroid and have Lupus and Adrenal insufficiency. Personally I think it is adrenaline running as well.
Are you able to get help with your thyroid privately - Lupus and thyroid are connected.
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I feel really saddened and angry too when I hear how long such conditions can take to be diagnosed. I know many conditions can take a long time but decades is just inexcusable.
xx
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