Does anyone else with lupus suffer massive night-sweats - I lose 4lbs a night to my sheets and pillows!

[Haze]

[Sue2803]

I have sweats but not sure whether its my age as its only just started happening.

[jonesy1]

I do but I have them during the day as well. They are so bad that the other day my little grandson put his arm round me and asked why the back of my top was wet as i had only been sitting in the chair. Sometimes the sweat actually drips off my fringe into my eyes which can be very embarrasing especially as I do home visits for my job and I have to reassure them I am not infectous lol. Oh and how I wish it was true that we lost weight because of them as my weight just seems to be going up and up.

Sue x

[Jaxqueline]

Yes, definately but also cold at the same time? Sometimes it happens in the day. People around me assume it is the Menopause.

Take care.

[bettie]

Yes I have night and day sweats, if I mention it to the docs I bet they will say it's the menopause. I would love to lose weight with these sweats, but I don't, if I did (now I'm dreaming size 12 would be lovely). Take care x

[jonesy1 in reply to bettie]

I had a hysterectomy and ovaries removed at 38 and I am now 55 so i know it is not the change. Mine started Jan 2010 when I came off HRT which was also when everything else started to get much worse. Up until then the tiredness was put down to anaemia but by the end of 2010 I was under a rheumatologist for investigation into Lupus. I think the HRT was keeping most of it at bay.

i would like to be a size 12 again too lol x x

[Lorelei in reply to jonesy1]

Hi, Jonesy1!

I have had the same problem with daytime sweating...right down to the sweat dripping off of my bangs and onto other people! It is indescribably embarrassing!!

I started reading these comments from the bottom up. I wrote to Luupysue below about a drug I took that reduced the sweating. It was a prescription drug. The name and dosage are in the reply I wrote. If you take that drug's name to your dr, maybe he/she will be willing to let you try it!

I really feel compassion for the problem you are having! I understand it because I've lived with it, too!

Hoping you will be feeling better!

Lorelei

[tishvw in reply to Lorelei]

Please message me the details on those meds

Thanks

[blueqween in reply to jonesy1]

I was diagnose with diverticulitis four years ago after years of suffering. I also went through my menopause and was on HRT which was stop 6 years later. my doctor has now diagnose me with osteoporosis,rheumatoid arthritis. I was given metthotrexate but had an allergy reaction to it and was given Hydroxychloroquine. this seem to be fine but i am still having heavy night and day sweats and many allergys to food and medication. My doctor are now doing tests for lupus and the waiting is very stressful.

[LynnRobertson]

i know how you feel, my dressing gown is on or with me every day, it's on when i'm freezing then 10 mins later it's off cause i'm sweating buckets this goes on for most of the day.

[Yols]

Gosh I thought it was just me! I have the same as you have all described! Hot, bright red flushed face and wet hair near the scalp, then cold - very peculiar! I wake up in the morning with wet head/pillow. It is very embarassing during the day, people think it is a hot flush/age but am not old enough. The same applies with the weight - it just goes up and up

[lupylupus]

It is such a comfort to know that I am not alone.

I have had hof flushes for years and they have made me very miserable. The doctors also thought it was the menopause and as they don't fully understand lupus they had no idea it could be anything else. I went on having them and now I am 65 and it still happens. I think that says everything!

It has recently improved since I have been on Mycophenolate.

I would have hot sweats right through the night and many times throughout the day. Just like Yols above, it makes my hair wet around my scalp and it would drip into my eyes. Very embarassing when I was at work in meetings!

I would just about get to sleep and it would wake me up time and time again so that I was dreadfully tired all day.

Now the really horrid part of my saga! I always knew during the day that it was going to happen because I would have this dreadful feeling of a kind of doom and anxiety that would build up and make me feel so miserable. As it built up to a peak then the heat would come out. Then the hot sweat.

I would really, really like to know if anyone else has experienced this. It has been the worst part of this disease by far. There have been times when I felt totaly wrecked by it. The feeling of doom overcoming me at any moment and then I would know what to expect next. It would distract me from whatever I was doing and I found it hard to concentrate. I have always thought it must be only me who feels this and thought I must be a bit crazy due to it.

Please let me know if I am not alone. I do feel so much better since taking the new medication but dread having to come off it as I really must one day.

I am so sorry for all of you experiencing this and all the other issues we have to tolorate.

I am delighted to tell you that I am much better now and although it happens now and again (especially if I am going down with a bug) I am 100% better. I hope you all get better soon. My heart goes out to you all.

Margaret x

[jonesy1 in reply to lupylupus]

I can tell when they are going to happen during the day because i get a strange sensation radiate over me a bit like prickly tingling if that makes sense just before hand. This does then cause me to feel very anxious but I think it is only because I know I can't stop the hot sweat that will follow. the worse the sensation the worse the sweat is, sometimes it makes my scalp/head really hurt leaving me feeling quite unwell for a few minutes and then it is gone until the next time but if I have a lot in one day they leave me exhausted and weak. x x

[lupylupus in reply to jonesy1]

I feel so much better to know that you also have the same kind of symptoms. I wish you didn't for you, but it is a strange comfort knowing I am not alone. Thank you. x

[Gillyg in reply to lupylupus]

I have the same problems with the sweats night or day. I can tell in advance when they are coming on. I start to feel almost paniced and then sick with a headache and then they arrive so strange. It is not good for everyone else but good to know what it is. i keep being told it is the menopause but I think it is both. Keep well everyone.

[helentad]

Hi, snap. I spent a few weeks in hospital last year and every morning when they would help me out of bed they litteraly had to peel me off the bed, my night clothes would peel off the sheets and they would peel the sheets off the bed. They tried puttong on 2 or 3 sheets but they would be soaking in the morning. I would not have any blankets on when I went to sleep but during the night I would have to ask for one as I was freezing due to being soaking wet.

In the summer at home its bad and I sleep with an air cooler on all night. In the winter I am that cold that I have a blanket when I go to sleep then wake up hot then wet and so the cycle goes around.

It is a common symptom for all the SLE sufferes I know. You are not alone, the only thing I can suggest is lots of cool showers LOL. Best wishes Helen

[luupysue]

Hi snap, I wasnt sure if it was my age or something to do with lupus,I had a historectomy at 39 now 53, so I guess it could be either but reading all your answers I am guessing its more to do with the lupus, I sweat day an night, but also have very cold hands, my whole body swells up and goes red all over then I start shivering then dipping wet wit5h a really bad head, at which point I need my bed, happened yesturday at work so when I got home I went straight to bed at 430 and just got up now woke up sevearl times in the night as i always do freezing then sweating, I also wake up gagging for a drink in the night as my mouth is so dry.

Its good to hear were not alone, hope they can sort it all soon for us all. The water board must be loving all lupus suffers for the amount of showers we have lol xxx

[Lorelei in reply to luupysue]

Hi, Luupysue!

I love your name!

I have had a lot of problems with sweating all day long. One of my dr's, the chronic pain management specialist, prescribed a drug to decrease the sweating. It didn't work completely, but it helped a lot. The drug was called hyoscyamine HCl. If you take the name of this drug to your doctor, even if he's not familiar with it, he may be willing to prescribe it for you.

Also, having a dry mouth is a really common symptom of lupus. There are some lupus patients who also have Sjogren's syndrome which involves severe dry mouth and other symptoms. But almost all of us with lupus have some degree of dry mouth.

Biotene is a product you can buy in the drug store that will make you a little more comfortable and protect your teeth from decaying as a result of dry mouth. It is available as a rinse, tooth paste and a gel that you apply to your mouth at bedtime. The gel works best for me.

I hope that you will find some relief from these symptoms. Physicians often don't understand how awful the constant sweating is and just overlook treating it. I hope that your dr will prescribe something for you!

Hope you will be feeling better soon!

Lorelei

Found the pill bottle for anti-sweating med:

Trade name: Levsin

Chemical name: Hyoscyamine 0.125 mg suglingual tablets.

You dissolve 2 tabs under your tongue and they work pretty quickly to stop sweating.

[janeway24]

OMG. as like all you good people above I had put these hot sweats down to my age and possible menopause, but having read you letters I now believe they could also be my Lupus. Thanks everyone I thought I was going crazy. I am seeing my GP today, as with a lot of us he usually spends the time looking at his computer, but I have decided enough is enough I want clear precise answers to my questions and the right medication. I am fed up feeling so drained and in pain. So wish me luck. Best wishes to All of you. So glad your here.

[Lorelei in reply to janeway24]

Hi, janeway24!

I left a reply to Luupysue that includes the name and dosage of a prescription drug I took when my daytime and nighttime sweating was so intense. I took it because of the problems I had at work due to the daytime sweating. It didn't work perfectly, but it really did help.

Maybe if you write down the name of the medidine, your dr can look it up in his computer(!) and may decide to prescribe it for you.

Wishing you will feel better soon!

Lorelei

[lupylupus]

I have been fascinated by all your comments. Thank you!

I think our GP's should read everything on this site to give them an idea what lupus is all about.

I am not an anxious person and it was definitely not a mental problem causing this. It is obviosly physiological and not psychological. It is being caused by our immune systems and we are not bonkers as I think my GP must have thought!! LOL!!

Also ....Luupysue.......have you considered sjogrens syndrome for your dry mouth? it is very common for lupus sufferers to get this. I had it for years before the penny dropped.

It is the same treatment that you have for lupus but you should mention it to your specialist, especially if you have dry, prickly eyes as well. x

[elodielupus2]

I do! I do! And I find it so embarrassing, I would wash my hair and have to do it again the next day if i sweat really bad that night , it was really bad when I was pregnant but 18 months on, I still have it so it couldnt be pregnancy related . We have installed a ceiling fan and it seems to help x

[Hidden]

Hi Haze. Yes I do!!! am 39 so not sure if its my age but I wake up soaking - not very attractive I know!!!! Have windows open at night and then kids complain house is cold in morning!

[Thaddeus]

When I first got ill about 20 years ago, I suffered from terrible night sweats, would wake up one or more times a night dripping wet. My GP told me in a matter of fact way that the most common cause of night sweats was dental carries. Not a great help really.

The quality of my sleep was key to how well I functioned in those days. Must admit to being very glad the worst is behind me.

Love and luck to those of you who are relatively new to this curse.

Regards Thaddeus.

[Lorelei in reply to Thaddeus]

Hi, Thaddeus!

I've had lupus for 15 years and still have night sweats.

I'm also a licensed dentist. I have never, ever heard of any relationship between dental caries and night sweats!

Lupus patients do have an increased rate of dental decay due to the dry mouth that is a primary symptom of lupus.

Hope that clears that up!

[chrisj]

Had dreadful night sweats Haze, soaking but since they diagnosed and treated me for SLE over 5 years ago its improved. I thought it was a menopausal thing till my doctor took some bloods and told me my hormone levels were all down and normal....BUT...she never sent me for any more tests and I continued to suffer all sorts of problems...it was a locum that referred me to a rheumatology consultant within 2 weeks of seeing him. Since then the sweats have eased but not gone away. I have a floor standing fan that I use even in winter, I find that helps a lot. Cant remember when I last had a good nights sleep, what with that and dry mouth, waking as if I've spent the night in the desert....lol...got to laugh or I'd give up altogether...

[katrinaa]

I have terrible night sweats. I wake constantly at night soaking wet not from being hot cos iam allways cold in bed. I feel so sorry for my fiance having to sleep in the same bed. But he seems to understand. so i know how your feeling also.

[Lorelei]

I have night sweats about twice a month. They usually come at the end of a very tiring day. The day after the night sweats, I often run a low grade fever.

I have been tested by my gynecologist and am NOT in menopause or pre-menopause.

The most frustrating thing to me is that my rheumatologist insists that the night sweats and fevers are not related to my lupus!!

I would really like to know what other rheumatologists have told those of us with night sweats about their cause and relationship to our lupus!!

Thanks to anyone who can answer or explain!

[Mrsdoozer]

Hi

I was diagnosed with Lupus in 1999 along with Sjogens & Raynauds,

I to have night sweats that have become become slowly worse at night usually as i get nearer to the time my period is due. This also seems to coincide with the need to spend a penny more at night so I end up exhausted in the morning having made numerous trips to the loo and being woken up with dreadful night sweats.My poor husband is a light sleeper so it disturbs him every time I wake up burning up, kicking the duvet off going to the loo and then wrapping myself up in the duvet when I am freezing.

I have been to see my GP who was very unhelpful and said its probably your age! Having run the necessary blood tests to check my hormone levels they came back as normal and I am not menopausal.I have had a few urinary tract infections over the past few years but I am ok at the moment. He was quite dismissive about the problem after the blood tests results came back and reluctant to help.Only suggesting that i go back to my Consultant, but my next appointment with my consultant is not until January. It seems that the doctors are hesitant to diagnose or help with the various symptoms that occur at times as far as Lupus is concerned. Getting an appointment to see the consultant is very difficult at the best of times, I appreciate that they are very busy and I do not like to bother them when it seems such a minor thing that the GP could help me or advise with and they are the first port of call .

Does anyone else have similar symptoms ? Many Thanks x

[imsickandtired]

I have lupus and often soak the bed with sweat. My own research revealed that when the lupus is actively destroying cells the dying cells release toxins. Sweating is our body's way of trying to get rid of this toxic overload.

[Natura]

Haze...wish I could lose 4 lbs a night. Ha! I know exactly what you mean. It's awful....I feel like my skin is a 1000 degrees...I actually turn pink and you can feel the heat coming off my body. I can't stand it, but I am use to it. I have had this happen for over a year. It does disturb your sleep though, and I always wonder what damage it does to your body when you get that hot. I wear very lite pjs and just kick the blankets off as soon as it starts. Immediately after, you're cold and I pull the blankets back on. I get these in the day too. I wear t shirts and jackets so I can throw the jacket off quick when I need to. Very frustrating. Sorry this is happening to us all....

[hollyimo]

So interesting to read this. I have only recently been diagnosed and apart from joint pain, headaches and fatigue... I find my body is unable regulate temperature. In the day I am cold (I have Raynaud's) and wear a coat most of the day, even at home, but by night I am baking hot and wake up sweating and wringing wet. My partner is understanding but gets cold with the windows open and the lightest quilt on the bed. I think it does worsen around my period and I am hoping the hydroxychloroquinine will help me. I also have scoliosis and have had major surgery including costoplasty and Harringotn rod insertion. My rheum consultant nurse offered me amytryptilin to help with night pain, but I am unsure if this will help me. Any advice welcome. Could it affect my night sweats too? I am 39 and not menopausal. Thanks.

[pegsangel]

This may be an old thread, however relevant to my decade plus search for answers. Thank you

[DANA55]

Yea I have been getting night sweats correlated usually with a flare. But yes, this is a sign and symptom that is chronically associated with it. I know because I go through it.