Monday, April 12, 2010

Sjogren's Syndrome and Sweat

So, I've got a personal question for y'all.

And it's a bit icky. Ickiness hasn't stopped me from posting previously, read this, but consider yourself forewarned. I hope you don't mind my asking.

So my question is this: Has Sjogren's changed the way you sweat? Because I sweat much differently than I did before I began dealing with autoimmune disease.

I don't sweat under my arms anymore. And I have stopped perspiring on my palms and feet. But I sweat much more profusely from the skin on my face and trunk and on my shins. Sometimes, I have different physical sensations when I sweat. Instead of feeling flushed, perspiring, and warm in response to physical activity, I feel as though the skin on my face is ice cold. And slimy.


I perspire in response to different things, as well. Physical exertion, yes. But also when I eat or drink certain foods. I've come to expect the head itch/flushed face/perspiration when I drink wine, but who breaks out in a sweat while sitting quietly drinking a can of artificially sweetened cola? Or a cup of coffee? Or while digesting a non-descript but fairly large meal?

I have sweating issues more often when I'm crashing, or at least am functioning just barely above EMPTY on the energy meter. Not consistently, but often. Strange.

I asked my rheumatologist about it once. She said, "Yes. That is strange."

And that was the extent of our conversation about sweating.

But really, I'm OK with that. Because on reflection, while I don't understand the physiology, this isn't a symptom that bothers me enough to consider adding yet another medication to the burden on my already overtaxed liver. If there is such a medication.

I just want to know that I'm not the only weirdo out there that is experiencing this. Wait, I didn't mean you guys are weirdos, but, well, what I meant to say is that I hope that there are others that have some of the same symptoms. That weird old Julia has.

I suspect that some autoimmune related change in my sympathetic nervous system has something to do with my glistening er, transphoresis, er, diaphoretic, er, drippy issues. The sweat glands are triggered into activity by the sympathetic or autonomic nervous system.

Of course, I've been Googling and reading since my interest was piqued. You can read a great article about normal sweat gland anatomy and physiology here. The medical term for sweating excessively and unpredictably is hyperhidrosis. You can read more about this condition here.

I found a very interesting discussion on a specific type of a sweat mechanism called gustatory sweating here.
Gustatory sweating: Sweating on the forehead, face, scalp, and neck occurring soon after ingesting food. Some gustatory sweating is normal after eating hot, spicy foods. Otherwise, gustatory sweating is most commonly a result of damage to a nerve that goes to the parotid gland, the large salivary gland in the cheek. 
Most medical literature that I could find that discussed parotid-caused gustatory sweating indicated that trauma from surgery was the usual cause. But I parotids are and have always been enlarged since the onset of Sjogren's. Could it be possible that the sympathetic nerves innervating my parotids and the rest of my sweat glands have been damaged due to autoimmune disease?

When the autonomic or sympathetic nervous system is impaired in some way, the condition is defined as an autonomic neuropathy, and since the autonomic nervous system affects nearly every system in the body, the symptoms related to AN are enormously varied. AN can be caused by a wide range of conditions as well. You can read more about autonomic neuropathy on Medscape, here. Of particular interest is this paragraph:
Sjögren syndrome may lead to peripheral and autonomic neuropathy without characteristic systemic symptoms. A small-fiber neuropathy associated with Sjögren syndrome can be associated with widespread anhidrosis. Also, a sensory neuronopathy due to Sjögren syndrome can be associated with autonomic dysfunction. The cause of neuropathy in these patients is likely to be autoimmune, but this remains unclear.
I wouldn't be the least bit surprised if my sweaty issues are related to some kind of autoimmune-caused neuropathy.

What do you think?


Jenny Pettit said...

I don't know how much my answer will help you but you asked:) I don't have any issue with sweating that causes me particular concern - my Secret Soft-Solid takes adequate care of my underarms (which do sweat), and I don't recall ever noticing sweaty feet that didn't make sense (working out, shoes that don't breathe, etc). I do notice that I sweat at the drop of a hat (contrary to sweatless Sjogies), usually from a crease in my body (for example, inner elbow when holding a phone to my ear) or from the backs of my legs when sitting on anything but an upholstered seat. Lately I've been noticing my back seems sweaty under my bra. But, like you, these sweaty areas are almost always very cold to the touch (I just chalked it up to very effective sweat - I mean it's supposed to cool us down, right?). The idea of a damaged nerve from SjS swollen parotids makes perfect sense to me. And I get your whole explanation of the role of the automatic nervous system - however that's where I'm probably more confusing than helpful, because I also have dysautonomia, and already deal with that my body doesn't properly regulate temperature or fluid retention (among other things). Hope you enjoyed my personal dossier on my sweat habits:)

annie said...

I did notice that I no longer perspire/sweat the way I used to. When I do perspire, it seems an
inappropriate response to a normal trigger. If it's hot, I feel it's unbearably hot. With cold, I wear layers of clothing sometimes in the house because I can't warm up, while everyone around me is comfortable.I also get facial moisture after ingesting a meal.I barely perspire underarms, although I still wear deodorant, regardless. My hair is drier, so is my body. I know that we have a body temperature deregulation. Our responses are exaggerated. Many times, my face feels as though it's burning, and when I take my temp, thinking I have low grade fever again, my body temp is maybe 95. Sometimes, when it's hot and humid outside, people around seem okay with the temperature, and I can't tolerate that heat/humidity to the point that I have breathing issues, yet I can't tolerate air conditioning anymore. There is definitely a link to the nervous system not functioning well. No one tells or explains, but a neurologist should be able to help us, or at least explain what is going on.I have had various issues with lightheadednes, and imbalance, but no one knows what they are due to. I always say I can cope better if I only know what I'm dealing with, then I read and research and deal with it. Good luck to us all.BTW, Julia, I'm glad you're enjoying yourself with your various is way too short to deprive yourself!!

Jazzcat said...

I still sweat under my arms, but less.
I just have some "crisis" and when in one I sweat a lot, in th emiddle of the night, or just for no reason, then it stop. It's a bit strange.

stephanie said...

No sweat problems yet. I guess that's a good reminder for me that not everything has changed!

Heather said...

My sweat patterns have changed, now that you mention it. It doesn't help that I now have dry skin year round. And I have bad tempature regulation issues. Often when it's hot (over 85 degrees f) I'll besweating heavily, so that my skin will get ice cold, to the point where I'm shivering. And other times when the house is normal, I'm cold, even with extra sweaters and socks.

And I totally get what you mean when you say you don't want to make an issue with your doctor if it means yet another drug to take! I'll live with my weird lack of temp regulations, just stop adding more drugs!

Kristen said...

I still sweat under my arms like I used to. I have noticed that I don't feel like my body sweats enough, in the heat, any more. I get so hot, I feel like a furnace ready to blow.

Pauline said...

I have dry skin, my blood is always on the boil, to say I sweat is mild, I look like I have just stepped out of the shower, although I do not perspire under the arms. I very rarely ever have to wear a jacket and at my son's wedding recently it was 43 deg celsius, all I can say is so much for paying a hair stylist - all you can do is get over yourself, make sure you know The Lord Jesus Christ and then when you spend eternity with Him you will get a new body - I love this life, but can't wait for the new body with no pain and no sweat.

Cricketfeet said...

I just found this post after doing a search for "sjogren's sweat". My sweating has definitely changed and I kept hearing that Sjogren's stops you from sweating. I work out frequently and find that it's very easy to over exert myself and overheat to the point of feeling nauseous and ready to pass out. Eating and drinking (especially alcohol) will cause my head to sweat and I don't do much drinking anymore because I skip straight to the hangover.

Hubby and I did a couples mud bath a few years ago for our anniversary. It ended with me sweating profusely after five minutes and exiting the tub (mud and all) to go throw up.

My optometrist of all people has given me more good information than my rheumatologist ever tried to. She explained Sjogren's as your body not being able to sweat/tear/salivate EFFECTIVELY. She says that the glands produce the oils that mix with these fluids, so the fluids are produced, but they don't 'stick', so your body produces more. I don't know if that's 100% proven fact, but I do know that my skin is very dry (especially my heels), I rarely get blemishes (maybe the only positive), and even though I sweat profusely, I never have sweat stains ( sweat stains make more sense when you think about oil being involved).

Thank you for your post... I'm glad to see that I'm not the only one either!

Doctor Val said...

Glad to hear your comments about sweating. About 6 months ago I had stopped sweating completely and was experiencing extreme dry mouth requiring medication. Inexplicably, the dry mouth went away and I started sweating profusely. Now I have symptoms of dry eyes also requiring meds. I did not have the salivary gland biopsy since my symptoms improved however I do drink a lot of fluids and have dry lips. I'm wondering now if I should get back with my doc about the biopsy. Has anyone else experienced these yo-yo symptoms. I've also recently started having extreme heartburn and fatigue. I would appreciate info as I don't seem to fit the usual pattern.

Julia said...

HI Dr. Val -

A few points come to mind. First, if you are taking meds to decrease your dry mouth such as evoxac (civemilene) or pilocarpine, the first and most common side effect is sweating. Which would explain the increase in saliva accompanied by increased sweating.

Secondly, heartburn and fatigue are both classic symptoms of Sjs. Check out my sidebar for several posts about GI symptoms of Sjs. And fatigue is very very common problem as well. For me - it's the most profound symptom of all.

A lip biopsy is part of a classic diagnostic process, but my rheumy opted against it after she reviewed my labwork which contained an autoimmune workup. My ANA titre and anti-SSA (RO) auto antibodies were positive. So she diagnosed me based on my labs and symptoms.

Your comment about the "usual pattern" of Sjs.....none of us have a usual pattern, which is the crux of the difficulty diagnosing Sjs. Average length of time for diagnosis is seven years. SEVEN YEARS, since most of us have a patchwork quilt of symptoms.

Great questions. Keep me posted.

DaisyMay said...

Hi, great blog!
I'm trying to get diagnosed here in the UK, as I've been having all the sjogren's symptoms for ages. My doctor has finally agreed to refer me to a rheumatologist, even though she doesn't seem to believe there is anything wrong. (Despite my ridiculously dry mouth, skin and eyes, frequent corneal erosions and sudden onset of joint pains).

What led me to this post was the issue of sjogren's and temperature control. I can't seem to control my temperature at all lately. I feel hot most of the time, particularly my face and head, but it often spreads to the rest of my body too. I don't feel like I'm actually sweating most of the time, but then sometimes I do have a sudden sweat through my head, and then I feel vaguely 'normal' again for a little while.

Your blog post helped me to make the connection between feeling hot and the lack of sweat in sjogren's. (If this is indeed what I have...) Anyway, I wanted to thank you for the interesting article, I will be coming back!

cmh said...

Thank you so much for your post. I have never been on the site but I also searched for profuse sweat. I have never been diagnosed with sjogren's however I have been diagnosed with undifferentiated autoimmune disease for many years.. Lately I have such severe sweating episodes from my face down to my ankles, both waking and sleeping with chills afterwards, that I have become exhausted and on occasion nauseated. I will now investigate the Sjogren's aspect. If anyone has any other ideas I would certainly love to hear them as I am almost completely incapacitated by these symptoms on occasion.

el59 said...

I have the same problem, the last 8 months, my mum was diagnosed with Sjogren's a few months before she died with secondary problems but she didnt know if she was diagnosed with primary Sjogren's she could of prevented secondary problems. Now I am finding it hard to get to see a Sjogren's specialist in Enland.

el59 said...

In the UK the dr's don't tend to recognise sjogrens as a problem and I was told it can burn itself out, but I know differently regarding my mothers illness since her early 30s.

Beckys Dad said...


I have been diagnosed with Sjogrens in the UK for just over 2 years now.

I came across this blog as I have been having problems with excess sweating from my clavicle to top of head area, I havent been able to identify a definitive trigger. However, if I weren't to wipe myself, my sweating becomes uncontrolled and visually obvious to those around me. I still work, and this can sometimes become embarrasing, to the point where I am becoming really self conscious about it.

I carry a towel around with me now, and when going for meetings take my own fan so I can help "cool myself down". What I also find is that when sweating my neck, cheeks,face are cold - and i mean absolutely freezing, ice cold to the touch.

For those in the UK, it was the neurological pain I experienced that led to nerve conductivity tests that led to diagnosis following eye/mouth moisture tests and lip biopsy.

So far I have been told it's one of those things I need to live with.

Anonymous said...

Julia I could have posted this exact comment because you just explained my sweating issues to the T!!!I have noticed that I have a low body temperature ranging anywhere from 96.2 to 98 but it hangs around 97.4 I have had a fever for about 5 years at 99.3 and all of a sudden now I have started sweating and freezing It is such an awful feeling to be cold hot and sweating all simultaneously Every single thing you described is exactly what's happening to me Thanks for sharing

Anonymous said...

Not been officially diagnosed with sjorgrens but tick so many of the boxes. Dry eyes (have four punctual occlusions) and dry mouth. Loss or appetite, bladder problems, sinus, too. I've now noticed incidents of feeling extremely hot - not really sweaty, then normal, then hot again. My head feels odd and I've a sharp pain (doesn't last) in my upper arm. I feel I'll never be the same again. Been quite depressed although this has lifted a bit. So helpful to read about others with the same problems. But I'm sure it's far easier to know what you've got (then you can deal with it) than not having a diagnoses. I didn't tolerate antiobiotics at all well - even noticed they seem to have brought on tremors in hands and head that I'm not completely over. Thanks for being there. Comments welcomed!

Anonymous said...

I am 39, diagnosed with Sjogrens ten years ago. I've come to realize that a lot of weird things go on with my body, so I am usually not surprised! Sweating for me has become an issue over the past couple years, mainly under my arms, but on the back of my thighs when I am sitting, as well. One strange problem that has been going on for about a year now is that I perspire much more from the glands under my right arm. The temperature may be cool, yet I will still soak the underarm area of my right shirt much more so that the left, despite using antiperspirant (certain dri is what seems to help a little bit). Like other posts, I have noticed that I have temperature extremes - always cold in the winter and extra hot in the summer. Reynaud's syndrome tends to go along with sjogrens, so I think it may be a touch of that.

Marnie said...

I just did a search for a link between Sjogren's and sweating which led me thank you. I was diagnosed about 5 years ago with primary SS and am also having major problems with sweating (hot and cold)but it makes my skin feel very strange - almost as if I am covered with a layer of plasticene and my skin can't breathe through it. It makes me feel so ill I can't do anything at all. Sounds from your comments that it may be connected to SS. Thank you

Sal said...

Thank you thank you thank you for this post --I was recently diagnosed with Sjogren's (in the UK) after suffering with this disease for 30 years. I am so glad that other sufferers are coming out with info on this disease on blogs as otherwise I'd be lost in the chaos of my symptoms, symptoms that I have repeated to so many clueless doctors over the years. Yes, I have the standard core symptoms of Sjogrens and positive ANA, but never had an explanation for some of the most debilitating symptoms such as weird and horrible hot/cold body temperature, an accompanying feeling of nausea, trembling, (sometimes with lightheadedness and feeling of paralysis) profuse underarm cold sweating (in winter!) which I believe all started after extended episodes of numb swollen hands when sleeping, my nervous system suffered irreparable damage and shock, I believe, from this. So from your post I now understand this DOES relate to SS and I will look into the condition mentioned by an earlier commenter re; dysautonomia.. Thank you!

Cindyjolinn said...

I am so glad to have found this blog~ I was recently diagnosed with sjogrens by symptoms and blood work after MANY years of seeking help for pain and fatigue.
The sweating issue got me thinking and wondering if it is connected. I don't sweat under my arms or on my feet or hands. I do sweat on my chins, my scalp, torso, and especially my hairline behind my ears.I have not taken note what sets it off but it has been frustrating.
At any rate, I am discovering what having sjogrens means and trying to be proactive
thanks for every ones input
Cindy M.

Anonymous said...

Thank you for your comments about sweating.I notice that I have a greater range of body temperatures. When I am extremely tired I sometimes get so cold that the only way I can warm myself is to have a hot shower.On the other hand sometimes I perspire profusely particularly after exercise and I get so hot for hours afterwards .it is like my body is a furnace! I have had Sgrogrens for years.

Charlotte Howard said...

Great post. I've been diagnosed with Sjogren's for 5 years. Probably was walking around with it for 20. I don't take meds for dry mouth, but I do take Gabapentin. I'm constantly sopping wet with sweat, though my skin is freezing cold. I had to stop ballroom dancing--primarily due to fatigue & loss of balance, but also due to reactions from dance partners when they touched my skin!

The head sweat is awful. As someone else mentioned above, behind the ears is particularly bad. I also find I cannot have anything covering the back of my neck. No more turtlenecks, ever. And I have to keep my hair short. Otherwise I get the sensation that I'm suffocating (through the back of my neck?).

Jane said...

Very interesting - you're right - I don't sweat under my arms anymore either. In fact, I mostly sweat on my face in extreme conditions. I'm always running hot in the face and in general, but I normally have a low body temperature. Quite confounding.


Anonymous said...

Hi, I don't have Sjögren's but some kind of autoimmune polyneuropathy. I was diagnosed with Guillain Barré Syndrom years ago, but it goes on with discrete attacks. I have relapses all the time. (Most likely I have CIDP but I don't yet meet all the criteria for this diagnisos.
Sweating has been a huge issue since I got sick. I have never been sweating easily. And now it's completely unpredictable. I have gustatory sweating too. And more stuff that might fit into the "damage in the sympathic system" topic. I can't digest food properly. I have difficulties swallowing. Then the stomach just stores everything for days. I use flea seed for having any bowel movement. Bloodpressure and heartrate seem to get more disregulated. And so does bodytemperature. Sometimes it rises and falls so fast, that I really feel like having the worst flue I ever had. A friend of mine has an autoimmune liver disease and also new sweating issues. Some sweating might be explanable when you thing how your body always dealt with inflammatory processed. And the rest is probably nerv damage as you suggested.

Anonymous said...

Wow I dont know what to say, I used to be a big sweater lol no pun. 7 years ago I came down with graves disease, and my temp was through the roof always hot always sweating. The last 2 years I started losing the ability to sweat except in my face that will look like a waterfall sometimes. I was dx'd with sjogrens this year ana 1:640 zero tear production dry mouth dry skin crushing fatigue.

I dont sweat now under my arms, and so sweat in my sleep sometimes and on weird places of my body, my hips were sweating one time. My core temp is 66.9 to 68.3 I get the slicky chilly sweats too but like i said not normal sweat. I know its nerve damage because I am getting that neurapathy in my lower legs and feet and hands. Its got to be nerve damage or mis signaling of the nerves. I feel really bad most days like I have the flu constantly.

Anonymous said...

Hello Fellow SS suffers...

Oh my...I am so glad I found this page. I thought I had a screw loose...and so does my husband. I am sorry you all have this thing, but I am glad to know I am not alone! I have been diagnosed with SS, and reading all of your posts, is making all of this come together for me. I have had ultra sounds on my cheek and lymphnode glands, and already have damage to both. And my RA doctor says they will NOT regenerate. What damage has occurred is permanent. The brain fog, dry mouth, eyes and skin, and the list goes on, is crazy making...but the sweating is just horrid! I take a shower, dry off, and try to do my face, and dry my hair...and I am just dripping. I live in a cold climate, but I open my window in the bathroom, even when it is –4 outside, and have the over head fans on...and a portable fan blowing right on me. Some time it is so bad, I feel like I am going to just drop. I feel like I am going to pass out, and get so out of breath, that I have to stop everything, go sit down. It takes a good hour or more to finally cool down. I get so hot I feel like I just can't take it. I feel like screaming when I get like that. I try to move slowly, not hurry, does not matter.

"“If” I can sleep at night, I wake up during the night soaking wet...all around my head, neck and chest. I can no longer wear night clothes to sleep, even in winter. My skin is cold to the touch, but I am on fire "inside". People think this is all very funny...I do NOT! I also now have more joint swelling, and pain than normal. I can not take one of the medications for my RA. We tried it, and after 6 months, had to be taken off of it, as it had already damaged my eyes...and the damage there can not be reversed, and will not go away.

With all the posts I have read in the past weeks, I am shocked there are so many of us! I sure wish someone would get serious and come up with a way to help us.

I am sorry...I have just rattled on here. I am sorry you all have to suffer from this mess we are in. At the very least, we have all found we are NOT alone, and crazy! I hope we all can find ways to deal with this thing.


Anonymous said...

So glad I found this page! I haven't been diagnosed with SS, but I'm spotting so many similarities with all of your comments.

I recently stopped sweating in my underarms and under my breasts when previously I would sweat there so easily. The skin has gotten so dry that my GP prescribed an emollient and a steroid cream.

My mouth has become very dry, as has my hair. I've had two oral yeast infections recently because of the lack of saliva, and I get times when I find it difficult to swallow. My eyes get a little dry occasionally, as does "down below".

I've been so tired the past few weeks especially. I've been to my GP a few times in the last 2 years with joint pains (last time in Feb), but bloodwork has all been normal.

I didn't realise that all of my symptoms could be one condition - SS. My GP has been dealing with the joint pain and dryness on separate occasions so probably hasn't put two and two together yet!

Thanks for all your comments. They've really been helpful.

kate said...

I was diagnosed with SJ about 12 years ago. Since then, I've gone through menopause, breast cancer (hormone treatment, etc.), CML (chronic myelogenous leukemia (sp.), fibromyalgia. I'm doing well now. Taking hormone therapy for breast cancer, Gleevac for the CML, and synthroid for thyroid that has been failing for years. I have my energy 'almost' back. Over the past 12 years, I've been sweating heavily from my face, and head. It does not seem to correspond with activity. It just comes on me, when I'm tired. It does not matter if it's cool, or hot outside either. All of a sudden, I can be out shopping, for instance, and it starts. It's very heavy, and embarrassing. I started taking paper towels with me in my purse every time I left the house. It happens at home too, but I can handle it there. I don't wear makeup any longer, because it melts at some point, when I am out. I've talked to my gyne, and she prescribed an old blood pressure medication called Clondine transdermal patch, 0.1 mg. per day. It helps a bit, but it's not doing the job well. If I don't move around much,, etc., I'm ok, but the minute I start to dust, or climb stairs, or am just sitting in the car, on a shopping trip,...boom! I sweat profusely. I thought it was just me, because I don't see other women dripping from the face, head and down their necks, when I am out. My gyne prescribed another med to help with what she called a spastic urinary problem. How embarrassing. I tinkle myself, at times. Well, the med made me so dry I could not make spit. I have Sjogren's and you all know what that's like. So, the gyne took me off of it. I'm so worn out from these horribly annoying, and embarrassing conditions. I know they are not like cancer, but they are so embarrassing. I rarely go out with friends, because they don't understand. For them, menopause, and postmenopausal symptoms, are not this awful. They get hot flashes, but they don't drip, literally! I cut my hair very short, but it does not help. I dress in layers, so I can take them off when I start to sweat. It's not normal sweat either. It feels sticky, and smells awful. I'm at my wits end with this. I've read about medications that help to stop sweating. I bookmarked one that is spelled oxy...something. Not oxycontin. Botox won't work...I've talked to doctors about it. I'm so glad I found your blog!!! I honestly, thought I was the only one dealing with this nasty problem. I am going to call my gyne again, and talk to her about the oxy med. This cannot go on. It's troublesome that when you do go out, and you start to sweat, people really do stare at you. They probably think I'm a junkie. I'm 61 this year, and this should be a time when I have some freedom, but it's become a jail sentence for me. Thanks for posting, really helps to know that I am not alone in this.

Christine Priest said...

Hi everyone, in 1992 I contracted Hep.C from a patient(I was a Registered Nurse). Had treatment with Interferon and became non active( virus no longer active). Went through a long court battle as well as divorce, all at the same time. I was under extreme stress for several years. Diagnosed with Chronic fatigue Syndrome in 1996. Returned to work (verydifficult) for 5 years until diagnosed with Fibromyalgia in 2003. Since then anything I complaine about to my GP is put down to Fibro. Last few months have had terrible bowell troubles. Mentioned to my Rheumatologist that Optometrist had commented on my dry eyes and that I also have spontanious purple fingers that then go white and numb. Rheumy now thinks I have Sjorgrens. I,too, have low body temp.35.6C but uncontrolable sweating on face, head and trunk for past 10years(no one can explain). Thank heaven for your blog. I'm not alone and now know why! Sorry for rambling on but believe this is all brought on by Hep C and Interferon. Good luck to you all. Chri from Australia

Anonymous said...

I have sjogren's and severe autonomic neuropathy. They measure it with a QSART machine which is painless but only 55% sensative in finding it and they usualy do a seperate sweat test with blue powder to see where u stop sweating. i got tested with a sweat gland nerve fiber density skin biopsy, also pretty painless and more accurate about 80% it found I only have 19% of my autonomic nerves, no sensory neuropathy. Hope this helps

Dulcinea505 said...

I am a 74-year-old female who has been dealing with dry eyes for more than 40 years. After developing a lot of aches and pains and other symptoms, I was diagnosed with
Shogren's about 5 years ago. Around that time I started getting cold sweats. They always start at my left temple and usually encompass my head and sometimes my upper torso. This is dripping sweat to where I have to wear a sweatband. A new rheumatologist who is a university professor told me that my sweating is part of Sjogren's, caused by some kind of autonomous malfunction. He offered me a medication. I turned that down, and I will continue to use sweatbands. At least I am happy to know that I don't have a brain tumor.

Rebecca*SS said...

Hi SS's I was diagnosed with Lupus+1998 and Sjogren's=2006. About 8 weeks ago I started sweating severely where I drench clothing night and day. The least bit of activity will trigger unbelievable fatigue and sweating episodes. Also I can be sitting reading or on computer and I drench clothes. I take a shower and before I can dry myself off my body and head are drenched. It will continue for 30min-1hr after shower. Since this began I cannot walk up stairs or wash my hair without feeling shaky and seriously faint. My arms and legs feel so weak I can hardly use them. I also when sweating feel like I have cold chills. It can be very cool in the house and I'm feeling like I'm roasting from the inside/out. With Sjogren's we can have Autonomic Nervous System dysfunction where the mechanism that controls body temp and sweating is not working correctly. Also I looked up Chronic Fatigue and you can also have sever muscle fatigue, excessive sweating with cold chills, nausea, etc. and ANS Dysfunction. It is possible to have SS and CFS. Does anyone have Restless Leg Syndrome? I have that as well as Periodic Leg Movement Disorder. I learned that RLS and PLMD can also be caused by ANS Dysfunction...hmmm interesting. That would make sense if our ANS is malfunctioning why we can have so many overlapping issues. Thank you so much for your courage to comment. I am comforted that I'm not alone and I agree with the person who said the doctors and researchers should not overlook these problems. We need research to give us some answers. Does anyone have severe fatigue in arms and legs? Nice to meet you all and I will check back often to see how your doing and to share what symptoms I'm experiencing that are new.

Anonymous said...

For years I had strange fatigue and exhaustion and finally tests prove it's sjogrens. My sweats are head, neck, chest, and back when seated. I do qi gong.... very slow movements which strengthen my body and if I am faithful in up keeping regular practice then body is stronger and sweats are greatly reduced. I also am gluten free which helps digestion normalize and meditation helps with stress reduction. Prayer and friends further reduce feelings of isolation and also staying within the day or moment while learning to inventory my blessings also helps.
Thanks for post.

Tina Medina said...

Great blog and glad I discovered it. I too have been diagnosed with SS over 10 years and have steered clear of medication. I recently started sweating while eating. The food does not have to be spicy for me to sweat. I read that due to salivary loss/damage in SS patients the autonomic glands become confused and produce sweat instead. I sweat heavily under my arms and feet when stressed and on my face when eating. I even think I have produced allergies to skin care products as well as scents because I break out into full force nose sweating and nasal drip. I keep believing that sweating will help keep away the wrinkles. Saw one reader mention autonomic nerve testing. Wondering if this is worth it. How could it help?

D Knibb said...

Thank you all so much for your comments. I was diagnosed 6 months ago after 3 years of seeing different doctors. My sweating has become unbearable and increasingly embarrassing, I have been trying to work out if it is down to the illness or to the long list of medication I have to take. From this it would seem that it is likely to be the illness. I wonder if any of you also suffer from palpitations, mine until now have been fairly short lived and I've been able to stop them myself. The most recent episode went on for over 14 hours and needed A&E medical help to put it back into a normal beat. My heart rate at rest runs around 100/110bpm as I also have autoimmune lung disease. Does anyone have any experience of this that may help me?

Jennifer F said...

Yes. Interstitial lung disease compromises the ability of your red blood cells to pick up as much oxygen as is needed. Your heart beats faster to compensate.

Jennifer F said...

I have had palpitations for 40 years. Sometimes it feels like a fish out of water flopping around in my chest. You need to get a pulse/ox reader ($30 or so) which will tell you where your oxygen stands and how many beats per minute (BPM) it takes to get there. You want P/O to be above 90. You want your BPM to be below your p/o, and as low as you can get it. Mostly that requires calming yourself and taking longer, deeper breaths. If you let your heart rate stay high....above your P/O,, you will get enlarged heart followed by congestive heart failure. If you think Sjogrens has damaged your lungs, you need to learn to watch the warning signs or you will find yourself in the hospital with pneumonia. Hope this helps.

angiepm said...

I have primary sjogrens, ulcerative colitis, and behcets. I get vasculitis which affects my brain, balance, and kidneys, etc. I get pericarditis with extreme sweating to the point that it is running off of me in small rivers. My face, my head, upper arms, chest, and shins sweat. Other than that, everything is dry: my cuticles, my eyes, my mouth, my lips, my face is dry and scale,, the inside of my nose... This disease has a lot more issues associated with it than dry mouth and eyes, seriously so. Cerebral vasculitis can cause encephalitis like symptpms to the extent that it can cause strokes. My balance is affected after one of these episodes, my memory, and my ability to follow conversations, as well as adequately pronounce words. After a while, these symptoms get better. However, it is hard to have a normal life while stuttering, stumbling and falling around ( I fell and broke my ankle), sweating like you're dying, having chest pain from pericarditis that feels like your heart is going to explode, etc. I have been on disability for years, and I just keep accruing more autoimmune illnesses.
They say that attitude is 99.9% of dealing with anything. I am 53 years old and just so thrilled to still be alive and to have just had my first grandchild, but some days I am so weary, I fear that when I go to sleep, I might not ever wake up again. I take a whole laundry list of meds, including 15 mg of methotrexate per week with daily folic acid.
Faith has gotten me this far. If you are not a spiritual person, I just do not see how you are making it, having autoimmune ullness or illnesses. I know it has robbed me of the life that I was supposed to have been living, and I think that is the very hardest thing about it for me. I know that there are people who have it worse than me. I will be praying for you ladies on this blog. I know you need it, as do I.

Kathy said...

I have been looking for answers too, because before I knew I had this disease, I had tons of symptoms! One of them was sweaty toes, and I had never had sweaty feet at all! It went away after about 3 months, but every week or two I wake up with a sweaty stomach and have to change my pjs. Very odd!

Anonymous said...

I'm in a similar boat to you. I've never been diagnosed with Sjogrens, but I do have ulcerative colitis. Your sweating symptoms also sound like mine. I do have a question though, does anyone's sweat smell...different? I am not sure how to describe it fully, but it smells almost how I'd imagine bile to smell. My armpits are fine, don't smell or sweat, but I look like I fell in a pool. My whole body is sweating profusely and the smell is so strange. I'm constantly trying to figure out where the smell is coming from but it must be all over. It's vile and smells like rotting flesh in the sun. It's only started up in the last few months, same with severe joint pain. Helppp

Anonymous said...

Hi everyone,
I have not been diagnosed with SS but was referred toa rheumotologist this past spring. I am a 56 year old female who has the same sweating problems as the rest of you. I have been complaining of fatigue to my general practictioners for 3 years now. They finally diagnosed me with fibromyalgia because all my blood work comes back normal. The rheumatologist says I do not have arthritis but burrsitus which is an autoimmune disease since my hips and knees hurt. I too take gabapentin and a muscle relaxer for this. I also visited a gastroenterologist and found that I have SIBO. When I started taking Flor-A-Stor suggested by my gastroenterologist and removing sugar, grains and dairy my intense burning and sweating subsides. It seems I have a bacterial overgrowth in my small intestines and my body is trying to kill the bacterial. This is the hardest thing I have ever tried to overcome; it seems eating celery and having constipation issues compounded a growing problem. I hope this sheds light for someone else. I have had several rounds of antibiotics to kill the bacteria but it seems this is going to be a long process. My cousin tells me it is possible to cure yourself if you stick to the diet - and so far I agree!

totolino said...

i have the same cold sweats in unusual area of my body ( head,face,neck and the whole body after the minimal physical effort) none under my arm pits...i,m shivvering too ,trmbling all over ,muscle twitching & weakness...i believe not only our exocrine gland are damaged,but our nerves too... it,s weird and scaring this combination of dryness all over with sudden unhealthy sweat...but from all the symtoms i have the worst are my dry eyes and nose....recently dry ears too...and cannot stop that ...have one of you found a real improvment from any medication? ( because i didn,t ...even the artificial tears harms me more than help)

hummerbird said...

Finally, I have answers!!! I was just recently diagnosed with primary Sjogren's this past June. I have been diagnosed with Fibromyalgia 2003 and SLE 2009. But my rheumie had no answers for some of my symptoms. The dysregulation of body temperature, my new normal is 97.4 and if I'm at 99 I am running a temp. You can imagine me sitting in the ER with a temp of 103, Totally delerious because of a gall stone attack and when I finally get to be seen my temp is 99!The ER doc is totally confused and says the thermometer must be broken up front but I knew it wasn't. I have to throw a blanket over me if I'm sitting (this is winter or summer) because I getso cold. I just saw my dermotologist for a skin cancer and I showed him one of my pictures of my 'head' sweats. It literally looks like I stuck my head under the shower but yet my armpits are dry. My chest and back of my knees sweat too. He told me it is the Sjogren's. It messes with your sweat glands. I had no idea. I thought my biggest problem was the Lupus but now it seems I have more symptoms of Sjogren's than Lupus. I also have Raynaud's and my peripheral neuropathy is getting is now up to my butocks and my mid upper arms. So when I sit my bum gets the pins and needles feeling. Does anyone else have a hard time taking showers? I get sick like I'm going to pass out...doesn't matter if water is hot or cool. When I do get out, I have to lay down and like another blogger posted, I just sweat and sweat and I tremble. It sometimes takes my breathe away as my husband will say 'why are you breathing so hard?' I used to shower twice a day and now it's hopefully twice a week. I also have developed keratosis pilaris from the extremely dry skin and yes to the dry mouth, eyes, sinuses, and vagina. I've had it all off and on for the last 17 years. So glad that I finally have an answer to this weird stuff. I just never approached my doc about it because the normal reply is 'its lupus'. In fact it was the rheumie putting me on Plaquenil that prompted me a visit to the opthalmologist that diagnosed me with Primary SJS. I have cataracts both eyes and corneal damage to my right. I was rxed Restasis. So now this is a huge learning curve for me because I'm learning that I'm not alone with all these weird symptoms. Thank you everyone for your posts and have a Merry Christmas!

Unknown said...

Hi! I have had this disease for years and only just been given a diagnosis. Exteaglandular Sjogren's with polyneuropathy. The Sjogren's in all likely hood caused my polyneuropathy. It involves perpherial nerves, sensory nerves and autonomic nerves. My symptoms are extensive. Many organs are involved. Yes I have the same sweat attacks where my head, face and neck are drenched several times aday and night. My neurologist says it is autonomic dysfunction. If you suspect netve involvement see a neurologist. He will help you better than your rheumatologist. Insist on some nerve biopsy's that was the only way they were able to diagnose my polyneuropathy. All other tests showed nothing. That is why it took so long to be diagnosed. Unfortunately it now affects a lot of my body.
Good luck!

Bev said...

Hi I was diagnosed with Sjogrens in 1998 after being told by my doctor that I had 1 asthma then 2 allergies then 3 an ulcer then 4 dermatitis etc etc until one really good doctor tested properly and continued until she got an answer and said no everything you have is related to Sjogrens . Bingo I wasn't mad! Getting back to the sweating issue I no longer sweat under the arms or anywhere else but my neck face and back of my legs . Quite often I over heat and have to get under water to cool my body down as our body temperate gauges are broken now. I have just recently in summer been physically sick with the heat and exhausted so I find a cool shower until I feel lucid again helps. I'm not sure how to handle the fatigue it's starting to interfere in my daily life. My hardest thing hing is getting people to realise that I have an illness even if they can't see it I feel it!

苏淙强 said...

I have had this same condition like yours for 2 years? maybe. Every time it happens, area around my upper back, my arms, my neck, especially my two cheeks, they itch in a internally bursting outward way (very itchy) that it actually leaves some acne-like poles on the area, as if the skin has been boiling before!A year and a half before, this phenomenon happens once a month or something, now it happens a few times a week, it's time to get worried up and looking for something. What is this?

trishh said...

Oh hallelujah!! I have found my twin. My home is NOW always at or below 60degrees F. I sweat like a street walker on the front pew in church on Sunday morning!!!! To say the least. I can walk 3 steps and sweat like a ox!! I have never really sweated my underarms or anywhere really but then I was diagnosed with fibromyalgia and possibly CFS. NOW with all the meds. Savella and migraine meds also and butrans patch for pain. I swear just sitting if I think about water. It's depressing. I have to bathe, shampoo hair, dress, put on face, etcetera... In stages. Resting cooling down in between. All my rheumatologist says is its my medication.. Very frustrating.

Anonymous said...

I am so miserable that although I have lived with chronic depression for decades, and have talked myself through suicide for my families sake, this dibilitating and life altering sweating is enough to seriously make me understand more why someone could give up on life. I too have Sjogerns.

Amy G said...

I sweat like crazy but from the neck up. Autonomic neuropathy caused by Sjogens which has caused P.O.T.S., I finally discovered, is the key. Now I know why taking a showervleft me needing another one. Also, some foods cause me to sweat like crazy (headvonly) for much longer and more severerly then ever. i thought cheeae, chocolate and milk did this to everyone. Apparently not.