Wednesday, March 20, 2013

Sweating and Sjogren's Syndrome

I received this interesting question the other day:
My question relates to your recent post where you mentioned the sweats.  About a year ago, mine started.  Any kind of activity - normal housework, let alone gardening in any kind of weather, can bring on horrific upper body and head sweats.  It literally drips off of my head, leaving me with a soaked scalp and a need to wash my glasses.  I also have night sweats and often have to change my PJs during the night.  And yes, they are for the most part, cold sweats.  My rheumatologist has not said that they are related to my SS diagnosis, but I take it from your post that you consider then as a symptom of the disease.  I was wondering if you could give me a little more insight, and if you have any recommendations for what helps you.

Ah. Perspiratory problems.....I've written about this a few years ago and was ready to send off a link to my old post, but after thinking a bit more about it added a few tidbits.  Here's some excerpts from what I told this reader:

I can't say with absolute certainty that my profuse sweating is directly related to my Sjs, since many many other things can cause these symptoms, see this from

But it's highly suspicious since I couldn't blame menopause or perimenopause due to a removal of my ovaries with a hysterectomy back in 2000. Another common cause of sweating in sjoggies is the use of the drug civemeline, which stimulates saliva production but also induces sweating. I don't use this or similar medications so I can't assign blame there.

When I told my dr. that I was experiencing sweating, especially night sweats, he ran some bloodwork that would check for lymphoma; since although still rare, sjoggies are nine times more likely to develop lymphoma than the general population. He also checked my medications and discussed my specific perspiration patterns.

It's interesting that anhydrosis, an absence of sweating, is occasionally an autonomic nervous system complication of Sjs. You can read more about anhydrosis here. If it affects large parts of the body, it can be problematic if the body can't effectively cool itself when overheated causing heat stroke. While I seem to perspire profusely from my face, chest, scalp, and front of my legs (go fig!) I have found that I no longer sweat under my arms.

So after eliminating the biggies -- lymphoma, drugs, and menopause, it appears that my perspiration is one of those symptoms that is very bothersome but at this point rather benign. Lately when I complain about it to Dr. Young Guy about my sogginess I always say: it's so WEIRD. To which he will just reply: "Yep. It is."  And that's the end of our discussion. Which is the same response to the same discussion that my other rheumies have given. Hehe. I'm OK with that since addressing anything in autoimmune disease generally means adding another medication to my morning mountain of pills and I'd rather avoid making the pile any larger.

I've resigned myself to just lugging around lots of Kleenex or hankies wherever I go. I use the most waterproof make-up that I can find on those few occasions when I wear it. I have learned to love cotton underthings and other fabrics that wick moisture. It seems that clothing that is mostly polyester or other artificial fibers cause me to sweat more than other fabrics do.

I would definitely discuss this with your doctor, however, if those exclusion of causes have not been made, especially if your night sweats are severe enough to require changing nighties.


annie said...

Another interesting topic of conversation, Julia. I generally don't perspire, or not much anymore, and my body temperature is usually low. Yesterday I checked it at one point because I was very cold and jittery and it was at 96.5. The times I do perspire,my face and head usually sweat, and many times I notice that when I perspire it's usually due to the fact that I am overtaxing myself when I should be resting. Fatigue plays a big factor, and the body's difficulty in regulating body temeprature is the other reason for me.

cargillwitch said...

One odd symptom I had experienced for 10 years prior to my diagnosis was the absence of sweating when I SHOULD have been sweating. I did a 100km race under a heat advisory two years ago- and didn't need to wear deodorant. I thought it odd but not something one would complain of to a healthcare provider.My sweat glands are notably silent.

Unknown said...

On most rheumy questionnaires they ask u to complete when u go in and in fact any drs ask abt night sweats. However I have not noted one dr spending time asking abt it during my visits. What's up with that? Very odd. Makes me think they dunno what to do abt it. I have nite sweats and when they hit they are horrid. I am not sure why u have them some nights and not others. The search for knowledge continues!

Miki said...

No matter how hot it is or how much exercise I do, I won't sweat. Never have....I had to quit competitive gymnastics as a child because I kept overheating. Now, I still don't sweat EXCEPT for night sweats (awful) and when I am sick. Not ur if its related to the SS or not. My rheumy just shrugs it off and tells me to watch for signs of heat exhaustion.

Kelly said...

Responding to the question from your original post: yes, sweating is not normal for me and really never has been. Mostly, I have never sweated as much as other people in any given situation where you would expect sweating, but I had a run of cold night sweats in my 30's well before menopause was even on the horizon. That's about when my eyes were getting dry but long before I realized that my eye symptoms were in fact symptoms of something and that something was causing dryness, which was causing the stinging, burning and foreign body sensations.

Now, I definitely sweat with actual hot flashes whenever they come, day or night. Unlike many who responded, I still sweat under the arms, but chemically something has changed, because the sweat is much more, shall we say, odiferous than it used to be. I have tried everything to get the stench out of my workout clothes and have finally settled on Febreeze Sport Spray on the clothes before washing.

I don't have those cold sweats at night anymore, thank goodness. It's a horrible feeling and would be even worse in the daytime when you are out and about and there is really nothing to be done about it.

Ivan Lafayette said...

Your blog is so important. I wonder you never replied to my interview request for The Toxicologist Today. When you find yourself less busy drop me an email, will you? Cheers!

CJC said...

Just wondering if this site is still 'open'...with a very long space since last comment.

My question would concern the heavy sweating as well...