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peabody88
@peabody88

Posts: 57
Joined: Sep 16, 2018

Body odor without sweat -- Sjogren's Syndrome?

Posted by @peabody88, Wed, Sep 19 10:08pm

Hello all. I have been suffering for some chronic health issues since June and am being evaluated for a variety of possible conditions, including Sjogren's Syndrome. One abnormal (at least I think it is, but maybe not) symptom I've noticed is I will experience strong body odor from my armpits, without any sweating. This can happen when I'm just sitting on the couch watching TV. Since Sjogren's affects your exocrine system, I was just curious if this was a possible symptom — having body odor without sweat. I haven't found anything with a Google Search, but it seems to make logical sense to me so I was curious.

Some other Sjogren's questions I have — Anyone diagnosed despite a negative SSA/SSB panel? If so, how? Does anyone have any advice/knowledge on differentiating between Sjogren's Syndrome and serious dry mouth/eyes/skin from medication? Love to hear stories/advice from anyone with Sjogren's Syndrome!

REPLY

Hi:
I also have Sjogrens without the positive SSA and SSB. I had a high ANA, dry mouth, dry eyes, extremely dry skin and a positive Lip Biopsy. I also do not sweat like normal people, I never notice any body odor coming from my arm pits but I will pay attention now. When I workout I get very red in the face without sweat. I think its got something to do with my Autonomic System not working right.
Take Care
Debbie

Liked by peabody88

@redhead63

Hi:
I also have Sjogrens without the positive SSA and SSB. I had a high ANA, dry mouth, dry eyes, extremely dry skin and a positive Lip Biopsy. I also do not sweat like normal people, I never notice any body odor coming from my arm pits but I will pay attention now. When I workout I get very red in the face without sweat. I think its got something to do with my Autonomic System not working right.
Take Care
Debbie

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@redhead63 – Fascinating! Thanks for replying to my post! I'm a very complicated situation, because my Sjogren's antibodies AND my ANA have come back negative, and I only had one marker come back slightly positive on the Early Sjogren's panel. In addition, I'm on a plethora of medications for a variety of other health issues, which is what we've always attributed my dry mouth/eyes to. In fact, as I'm writing this, suddenly it seems far-fetched to think that Sjogren's could still be the answer, but the rheumatologist still seems to think it's a possibility, and it sure seemed to "fit" (at least before I started listing the negative test results lol). I'd never read anything about the sweating thing though, but it's something I've noticed and seemed to make sense with Sjogren's, so I was curious if anyone else experienced something like that, in connection with Sjogren's or not.

If you don't mind me asking, how long ago were you diagnosed, and how long A) were you actively pursuing an answer before being diagnosed, and B) how far back do you recognize symptoms now that you know more about it?

Another interesting observation! I've been really struggling with whatever's going on with me for a few months now, so it's been a fair stretch since I've really exercised like that, but I definitely remember my cheeks always getting super red and I've always gotten easily overheated, and I don't think there's usually much sweat involved (although of course that's subjective, and could be an exaggerated memory). Definitely got me curious now!

Hi:
Well if your ANA is negative than I don’t understand how a Doctor can tell you that you have any sort of Autoimmune Problem. What test came back positive?
Did you have a lip biopsy?
I think I had Sjögrens for a very long time because I had dry mouth and gritty eyes. When I retired in 2006 my eyes and mouth were still dry. So I decided to go to a Doctor in 2007 and the Doctor did some blood work and told me that I had to go see a Rheumatologist because I had a high ANA. So within 3 mins. into my conversation with the Rheumatologist she told me that I had Sjögrens. I had no idea what that was. Within 2 weeks I had a lip biopsy and it was positive. So it took less then a month to get a diagnosis. I think I had Sjögrens for at least 10 years before going to a Doctor. When I was working I did not have time to go to any Doctors. I worked a lot of hours and I was too tired most of the time because I worked shift work. I do have a mild form and I do not take any medications for Sjögrens. I do have a great Rheumatologist and she just knew because I wasn’t on any medications at that time so it was easy for her to diagnose me. I hope this helps

Thank you for sharing this. A little over a year ago I started noticing dry eye and dry mouth (at night) issues, after having dealt with dry skin issues for years, but figured since I live in Los Angeles, that probably has a lot to do with it. I went to a Kaiser eye Dr. a few months back and he said I have blepharitis and he recommended cleaning my eyelids, warm compresses, antibiotics to put on the edge of my eyelids, and frankly I felt the root cause had to be something else, so I have not done the antibiotic treatment faithfully, and things have not really changed . My gut feeling has always been that I have some early symptoms of perhaps diabetes, and have found links online to dry eye and dry mouth. Now I’m noticing a strong armpit odor, which I have never had, I’m 56, in great shape, I have a very healthy diet, I’ve been fully gluten-free for 3 to 4 months now, have taken out sugar almost altogether, do not take any medications, just vitamins. I just heard about Sjogren’s but haven’t had any panels, don’t know what ANA you mention even is. And lip biopsy? Agh. I just trust in whole foods to heal and keep trying options. I wonder if sodium intake has something to do with this.

I appreciate your sharing your findings and I’ll try to share more as I learn. Thank you!

@wrldctzn

Thank you for sharing this. A little over a year ago I started noticing dry eye and dry mouth (at night) issues, after having dealt with dry skin issues for years, but figured since I live in Los Angeles, that probably has a lot to do with it. I went to a Kaiser eye Dr. a few months back and he said I have blepharitis and he recommended cleaning my eyelids, warm compresses, antibiotics to put on the edge of my eyelids, and frankly I felt the root cause had to be something else, so I have not done the antibiotic treatment faithfully, and things have not really changed . My gut feeling has always been that I have some early symptoms of perhaps diabetes, and have found links online to dry eye and dry mouth. Now I’m noticing a strong armpit odor, which I have never had, I’m 56, in great shape, I have a very healthy diet, I’ve been fully gluten-free for 3 to 4 months now, have taken out sugar almost altogether, do not take any medications, just vitamins. I just heard about Sjogren’s but haven’t had any panels, don’t know what ANA you mention even is. And lip biopsy? Agh. I just trust in whole foods to heal and keep trying options. I wonder if sodium intake has something to do with this.

I appreciate your sharing your findings and I’ll try to share more as I learn. Thank you!

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My mother-in-law began having the same symptoms you describe around age 50, but she was a heavy smoker so all assumed her dry eyes and mouth were due to that. A year or so later she began having pain when walking up stairs and in hand joints, Sjogren's drys out the joints, but she assumed it was arthritis. She was in the early stages of Sjogren's a disease we had never heard of before. Even if you don't have Sjogren's be sure to keep your mouth lubricated as it led to her beautiful teeth being destroyed and she eventually had to have implants.
After diagnosis she was sent to a Sjogren's specialist at Script's in La Jolla CA. He told her he wouldn't treat her unless she quite her smoking (3+packs a day) because that drys the mouth and aggravates the disease. She was furious, kept smoking and Sjogren's wasn't the cause of her death, it was lung cancer at age 70.

@wrldctzn

Thank you for sharing this. A little over a year ago I started noticing dry eye and dry mouth (at night) issues, after having dealt with dry skin issues for years, but figured since I live in Los Angeles, that probably has a lot to do with it. I went to a Kaiser eye Dr. a few months back and he said I have blepharitis and he recommended cleaning my eyelids, warm compresses, antibiotics to put on the edge of my eyelids, and frankly I felt the root cause had to be something else, so I have not done the antibiotic treatment faithfully, and things have not really changed . My gut feeling has always been that I have some early symptoms of perhaps diabetes, and have found links online to dry eye and dry mouth. Now I’m noticing a strong armpit odor, which I have never had, I’m 56, in great shape, I have a very healthy diet, I’ve been fully gluten-free for 3 to 4 months now, have taken out sugar almost altogether, do not take any medications, just vitamins. I just heard about Sjogren’s but haven’t had any panels, don’t know what ANA you mention even is. And lip biopsy? Agh. I just trust in whole foods to heal and keep trying options. I wonder if sodium intake has something to do with this.

I appreciate your sharing your findings and I’ll try to share more as I learn. Thank you!

Jump to this post

I left out that she stopped sweating also, which made exposure to heat a challenge, as we need to sweat to cool off.

@wrldctzn

Thank you for sharing this. A little over a year ago I started noticing dry eye and dry mouth (at night) issues, after having dealt with dry skin issues for years, but figured since I live in Los Angeles, that probably has a lot to do with it. I went to a Kaiser eye Dr. a few months back and he said I have blepharitis and he recommended cleaning my eyelids, warm compresses, antibiotics to put on the edge of my eyelids, and frankly I felt the root cause had to be something else, so I have not done the antibiotic treatment faithfully, and things have not really changed . My gut feeling has always been that I have some early symptoms of perhaps diabetes, and have found links online to dry eye and dry mouth. Now I’m noticing a strong armpit odor, which I have never had, I’m 56, in great shape, I have a very healthy diet, I’ve been fully gluten-free for 3 to 4 months now, have taken out sugar almost altogether, do not take any medications, just vitamins. I just heard about Sjogren’s but haven’t had any panels, don’t know what ANA you mention even is. And lip biopsy? Agh. I just trust in whole foods to heal and keep trying options. I wonder if sodium intake has something to do with this.

I appreciate your sharing your findings and I’ll try to share more as I learn. Thank you!

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Good evening, @wrldctzn. How nice to meet you! Kudos to you for all the positive things you have going on in your life. I, too, believe that what we put into our bodies has a great deal to do with our general health.

I have Fibromyalgia, among other things. When I was still working in the school system, I never could get enough water to drink during the day. Perspiration would drip down my face. I had rivulets of sweat down my back and pretty much everywhere else. It was so

embarassing!

Also, my best friend has some of the symptoms you mentioned. I had never heard of the disease before her. Interestingly enough, she is Type Two Diabetic, as am I. She is on a super strict diabetic keto diet. I do Lazy Keto. Just a bit more carby. Gluten free, both of us.

I don't know if any of this is connected. But you have given me some things to think about. And I hope that with continued discussion with others on here, you will find some connections that will help you and your physicians to figure this out. I hope you will check in with us again so we can compare notes!

@gardeningjunkie

My mother-in-law began having the same symptoms you describe around age 50, but she was a heavy smoker so all assumed her dry eyes and mouth were due to that. A year or so later she began having pain when walking up stairs and in hand joints, Sjogren's drys out the joints, but she assumed it was arthritis. She was in the early stages of Sjogren's a disease we had never heard of before. Even if you don't have Sjogren's be sure to keep your mouth lubricated as it led to her beautiful teeth being destroyed and she eventually had to have implants.
After diagnosis she was sent to a Sjogren's specialist at Script's in La Jolla CA. He told her he wouldn't treat her unless she quite her smoking (3+packs a day) because that drys the mouth and aggravates the disease. She was furious, kept smoking and Sjogren's wasn't the cause of her death, it was lung cancer at age 70.

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Dear@gardeningjumkie, I am so sorry for your loss of your mother in law. It is so hard for people to quit smoking. And with three packs a day, that's a fairly large consumption of all those addicting chemicals the manufacturers put in to guarantee addiction.

My oldest child has Stage Four COPD. Four years ago they told her she would die if she didn't quit smoking. She has tried and tried. To no avail.

Yesterday the city came out and posted an order of condemning her house. She has to be gone tomorrow. We can't let her be homeless, so we are taking her in temporarily. Until she can find an apartment. Now how is she going to get cigarettes with no car? We refuse to buy them for her. We shall see.

Sorry this is so long. Wishing you well on your journey to better health and peace. Talk to you later?

Mamacita

@mamacita

Dear@gardeningjumkie, I am so sorry for your loss of your mother in law. It is so hard for people to quit smoking. And with three packs a day, that's a fairly large consumption of all those addicting chemicals the manufacturers put in to guarantee addiction.

My oldest child has Stage Four COPD. Four years ago they told her she would die if she didn't quit smoking. She has tried and tried. To no avail.

Yesterday the city came out and posted an order of condemning her house. She has to be gone tomorrow. We can't let her be homeless, so we are taking her in temporarily. Until she can find an apartment. Now how is she going to get cigarettes with no car? We refuse to buy them for her. We shall see.

Sorry this is so long. Wishing you well on your journey to better health and peace. Talk to you later?

Mamacita

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We both know love alone won't help an addict quit. If I were a cigarette junkie and housebound I would find a source to order online. My husband orders his cigars from an online source. Good luck with you housing a person going though nicotine withdrawal if see doesn't have them. it won't be easy for either of you.
Please don't apologize for a long email to us, or I will have to start apologizing too. My son constantly reminds me, "Brevity Mom", but off loading onto others sure helps me and others at times. I figure if they don't want to read a long email it's their choice to skim or skip it. I liked reading yours.
A side note- After diagnosis with lung caner my mother-in-law lasted 4 months (this is a woman who was married to a radiologist, but avoided chest x-rays fearing the results). 2 months after diagnosis she decided to quit, thinking she could live longer. She was not only miserable from chemo (which the doctors had told her it was too late as it had spread), but the nicotine withdrawal made her even more miserable. I felt so sorry for her and knowing it was too late now and could not believe more cigarettes would make any difference I suggested she allow herself to smoke. It did bring her some comfort, but her bedroom was filled with waist level smoke and selfishly I started regretting my decision. She would puff on her cigarettes and with then go back on her oxygen.

For you smokers out there, if you have ever watched a person suffocate because their lungs no longer can process oxygen and even pure oxygen makes no difference because the lungs are failing I do believe you would be motived to stop today. If there are good ways to die, this is not one of them.

@gardeningjunkie

We both know love alone won't help an addict quit. If I were a cigarette junkie and housebound I would find a source to order online. My husband orders his cigars from an online source. Good luck with you housing a person going though nicotine withdrawal if see doesn't have them. it won't be easy for either of you.
Please don't apologize for a long email to us, or I will have to start apologizing too. My son constantly reminds me, "Brevity Mom", but off loading onto others sure helps me and others at times. I figure if they don't want to read a long email it's their choice to skim or skip it. I liked reading yours.
A side note- After diagnosis with lung caner my mother-in-law lasted 4 months (this is a woman who was married to a radiologist, but avoided chest x-rays fearing the results). 2 months after diagnosis she decided to quit, thinking she could live longer. She was not only miserable from chemo (which the doctors had told her it was too late as it had spread), but the nicotine withdrawal made her even more miserable. I felt so sorry for her and knowing it was too late now and could not believe more cigarettes would make any difference I suggested she allow herself to smoke. It did bring her some comfort, but her bedroom was filled with waist level smoke and selfishly I started regretting my decision. She would puff on her cigarettes and with then go back on her oxygen.

For you smokers out there, if you have ever watched a person suffocate because their lungs no longer can process oxygen and even pure oxygen makes no difference because the lungs are failing I do believe you would be motived to stop today. If there are good ways to die, this is not one of them.

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Hello, @gardening junkie, how are you this evening?

I really enjoyed all you had to say as I read your post on here. Yes, you are right, people who are addicted will do whatever they have to, to get their next "fix.:

It makes me really sad to think about all those who are addicted. No one wants to be addicted. Not really. They find themselves in a desperate situation, unable to function without their substance.

I had to work on moving my daughter today out of her condemned home. We turned the truck in at five, right on time. I haven't taken the time yet to look up possible conditions, as I am pooped! I'm not used to going all day without a break.

I do my best research late at night. Looking forward to checking on this puzzling set of symptoms. I hope you have a blessed rest of the day, and "talk" to you soon!

Mamacita

Liked by gardeningjunkie

I was diagnosed with Sjogrens at age 28, after the birth of my first child. I haven't experienced the strong body odor you mentioned and, until recently, I hadn't experienced extreme dry eyes and mouth. I am on lots of meds currently and was wondering too, if it's the meds or Sjogrens causing the dryness. One thing I wanted to share with you about the Sjogrens is that after the birth of each child anf through menopause, I had horrible flare ups. It seems hormone fluctuation is a trigger. Wishing you the best.

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