Sjogrens Syndrome and bad breath. Help!
Posted , 33 users are following.
I found out I had sjogrens last summer. One night, about two years ago a partner asked if I'd brushed my teeth. I told him, "Yes. Does my breath stink or something?" I had never had problems before and was surprised. It was one of many indicators (aside from swollen feet, feeling like needles were poking in my eyes and a tiredness, among other things). It was hell.
It still is.
Overnight, I went from having a fairly normal life to feeling like my face is plastic, drinking an ocean of water I can't feel on my tongue, dry nostrils, swollen feet, swollen eyes LOOKING older than I am. which had been a symptom my entire life, and the cherry on top? Bad breath, causing embarrassing moments at work, depression, and bouts of tears and social avoidances.
Ive tried every over-the-counter product you can name. All of the Biotene products, sugar free gum, Chlorophyll pills, Odorol pills, tea, alcohol-free mouthwash, Therabreath, I can go on forever.
Nothing is working.
Live gotten to the point where I even take a toothbrush and mouthwash to work. Doesn't work.
Im at my wit's end and find myself explaining sjogrens (which people just look at me like I'm crazy and are not receptive enough to research this illness to have empathy). I'm have SO many embarrassing moments, since that night and I have no idea what to do about it. It's disrupting my life as a teacher.
i avoid meeting s with faculty and other social events.
I have an interview coming up on the 22nd and I'm tempted to cancel it; because, I don't want my breath to turn people off.
This is is SO new for me. I call it a social experiment. Some people still treat me the same. Others avoid me, even grip their noses when they see me.
I would like ANY advice you have for this.
Ive seen a podiatrist, dentist, ENT, gastroenterologist, you name it and I'm at my wit's end.
I would appreciate your advice.
Thank you-
2 likes, 102 replies
christine26761 oly._03278
Posted
Hiya oly, really feeling for you, gentle hugs from over the seas. I use an over the counter mouth moisturiser in spray form, I’m at my worst in the mornings actually, there are lots of sprays etc to choose from, I use a spray for dry eyes too.
,it works miraculously. I’ve just had 14 years of complete dizziness due to most of the fluid in one ear crystallising, what a horrid 14 years it was too, I’m a Christian so I’ve had heaps of prayer over the years, but I was prayed for in the middle if our service one Sunday. As were many who stuck up there hand who were looking for a healing from a prolonged illness, I don’t even who the people were who prayed for me, as the entire congregation rallied around us all and prayed, but I was totally healed by the next morning.. this only happened and came back to nornal 2 months ago, sooo refreshing and excellent to be able to walk again without aids, I go out a lot now it’s like a new life for me as I didn’t move from my electric chair much actually, I can now sleep on my other side and turn my head without that dizzy feeling, So this is a horrid Syndrome, take good care of you oly, no one really knows what we go through there are soooo many differing symptoms to this SS. I have raved on too much about me here oly, sorry about that, but there is help for you out there. be blessed and have a lovely day..😍💐💐
oly._03278 christine26761
Posted
Thank you dearly for sharing your stories. I never tire of a good story or experience. It’s the only way we truly have access to our humanness. I don’t pray as much as I used to. But it is constantly on my mind. My relationship was deeper, before a horrible divorce about five years ago. That’s when so much of my new stress started. I think the Sjogren’s was so fully brought on Fromm years of crises that had not stabilized.
I think it’s hard enough to try to stabilize ones Energy here. You know? Someone suggested I join a blog. Something I’d never done before. And I’ve akready met such wonderful people with amazing advice who have really centered me.
It’s a true blessing to me, as I go through this.
So thank you for being here.
christine26761 oly._03278
Posted
Thanks oly..have a lovely day, be blessed , must say we all usually have other syndromes with Sjogrens, I have 3 others also. Sometimes it’s hard to know which one is giving me the trouble, lol.the chronic Fatigue that most of us get has very similar symptoms..Try getting back into your faith journey, I don’t know what I would have done if it wasn’t the fact that I have an anchor..💐💐😍😍😍
Nu2this oly._03278
Posted
What did your Gastrologist say? Did you have an endoscopy? I had that years back and it turned out to be h pylori. Its a stomach infection that causes bad breath. I was given a month worth of antibiotics and thank God it went away. If Gastrologist has not suggested it I would bring it up. I had alot of bloating and weight loss. Hope something works
lily65668 Nu2this
Posted
oly._03278 Nu2this
Posted
Thank you-
oly._03278
Posted
dena47160 oly._03278
Posted
oly._03278
Posted
First, let me say a lot has happened, since I posted above. I did not get the job at the school I was so anxious about. I have, however, landed a better paying teaching job. It is out-of-state and am up, at this hour, already afraid to start my first day, due to the halitosis not yet having a cure: the interview wa done over Skype, which was a blessing. But this morning, I have to go to breakfast and meet everyone. I constantly wonder where I’m going to sit, how I’ll be able to sneak away and scrape my tongue or brush abd eveb that lasts only an hour or so. If that.
I’ve read various posts about people who suffer from halitosis and even the people who love me distance themselves from me, even though they are aware that it want always like this. It’s onky been the past three years, but it has been a nightmare.
My practitioner put me on two weeks of Diflucan to see if that clears up any yeast I might have in my esophagus. I’ve recently made changes to my eating habits, but the sulfur smell and taste seem to wake me up at this hour and I start to feel extreme anxiety. I even thought about Judy not taking the job and bailing out. The thought of a “short meeting” this morning is even frightening. It hurts, because I am dry good st my job and love teaching children with accommodations.
Yet, the dry mouth is causing bad breath and I’m so depressed about it. I observe people who are social with ease and am terrified this problem has followed me here. It’s a whole new set of getting used to people, having to figure out each day socially and waiting to be discovered. People are not so good with smells. My silver lining is I have a fiancee who sticks by me, buys me anything we research that might help, is leading me to the school on my first day, abd when I arrived had gone to the store and bought a bag of dry mouth products, apples, cinnamon stop cigs, etc to try to ease my anxiety. He’s not perfect, but where it counts, he’s there, just as you all have been there throughout all of this.
Reading your comments, hearing your stories or seeing that you’ve posted has given me strength you’ve never known, even when I’m in the midst of breaking down at a social event. There you are, encouraging me to go on. This is new for me, bad breath. So the adjusting has been tough. So far, nothing is working long-teen, but I keep ordering products that might help. Please keep me in your prayers. I need a job and health insurance and without either, it would be even tougher. Your prayers are appreciated.
Oly.
lily65668 oly._03278
Posted
Briefly oly - all the very best. I'll keep you in my thoughts today. I'm just about to leave for my third ophthalmologist opinion, having been told by the last one that I have zero tears, nothing can be done about, I can't ever have an op for my encroaching cataracts as it would be too dangerous with totally dry eyes, but "don't worry about it". That injunction fell on stony ground, needless to say!
On top of which, just three weeks after that last consultation I had a good cry over some family news and - lo and behold! - produced a few drops from what I perceive as my good eye and a normal quantity from the bad one. Hoping to sort this out with the eye surface specialist this morning.
Once again - all good wishes, and try not to get too nervous. As I'm sure you've noticed, that dries your mouth out even more. Come back and let us all know how you got on, won't you?
oly._03278 lily65668
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lily65668 oly._03278
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Still thinking about you oly. You were in my mind most of the one-and-a-half hours I waited in the hospital this morning. Unbelievably good outcome from that, btw, but I'll make a separate post about it this evening, as I gained a huge amount of info that I think might be relevant to others.
I hope your day goes as well as mine, and I'm sure we all look forward to hearing more.
lily65668 oly._03278
Posted
Oly, I just wanted to add that your prayers for me (as per your post) seem to have worked. Thank you for that!
As mentioned in my earlier post, I had a very fruitful visit with the new ophthalmologist this morning. (Of which more in a new thread later on.) After being fobbed off by the other two ophthos earlier this year, and told no one could ever operate on my encroaching cataracts, I felt thoroughly discouraged about this one. I really didn't want to get up and go to the hospital. (Not helped by temperatures in the mid-30s°C/mid-90s°F, high humidity, plus the fact that I've gone down with shingles for the second time in 20 years.) It was only the knowledge that they'd bill me €50/$60 for the appointment anyway that got me out of the house.
I really hope your day was good too.
oly._03278 lily65668
Posted
When I first arrived, I was glad to see that we were seated in the cafeteria. I was able to find a seat at the end of the table. No one was there and there were people slwalkibg about. One young lady sat two seats over from me and I sparked up a conversation. Although I woke with sulfur on my breath, I managed to take a pretty biotic, floss and brush tongue. I also had dry mouth gum with me. I didn’t feel as badly breath-wise. She moved closer to me and I told myself not to panic. A team of teachers wanted me to sit with them, but I told them I would later. I didn’t, kept thinking about positioning and I needed space. Later, I went through my room and started putty by things in my room. I met my para and was pleased to discover the bathroom was right next door to my room. I also managed to get visitors, here and there, who came in. I just kept moving and talking as I moved around to ease the anxiety. Two teachers really helped me, since I’m new to Georgia and no one fully told me what the protocol is. One was really funny and spiritual and helpful. The other eased my worries about being new to elementary education. It was a welcome surprise and it lasted throughout the day. TOMORROW is the day I hope I get through. I have to sit in a group for a professional development session. It can be close proximity. The good thing is that my probiotics that I ordered came in today and received good reviews. I’m going to chew one tonight after I brush and in the morning after I brush abd taje one with me just in case. I hope they’re as good as the reviews. I hope I have more days like today. I read your message while sitting at the table this morning and it kept me going. Please keep those prayers coming. The worst is to be stigmatized early-on. I discovered I also have meetings every Wednesday I’m hoping I survive. This is all so new to me. I was incredibly social before the dry mouth abd bad breath. Now, I just have to put one foot in front of the other and try as many techniques as possible to improve my condition and social life. Thank you so much for walking me through it. You’re an awesome cheerleader...
Oly.
lily65668 oly._03278
Posted
Hi Oly,
I'm glad things went well the other day. Thank you for your kind words, but don't forget you did it all yourself - I had very little to do with it!
I do hope things continue to go well, and you find a way to work around your problem even if you can't find a cure. I've actually come across quite a few people with halitosis in my life - including my father - and it didn't seem to stop them leading a normal life.
The most notable was a UK ophthalmic optician I saw every year for about five years. They are authorised to do most of the tests and examinations an ophthalmologist can do (but not the treatments). In those days they didn't have all the fancy equipment they have now, so they had to use the old-fashioned ophthalmoscope to examine the retina. This meant getting seriously up-close and personal with the patient - literally a couple of inches away! This particular optician - a young Indian woman - seemed to be good at her job, but she had a very serious breath problem, which was all too noticeable during the close part of the examination. She must have known about it, but it clearly didn't bother her - or her employers.
Ditto with my spitting problem. I do occasionally go through agonies of embarrassment - especially when I notice someone wiping their face - but I've always had it so I've just had to get on with it. It's something of a mystery to me. Even during the flare-ups of dry mouth, when I have so little saliva my cheeks and lips are stuck to my gums, I still somehow manage to produce enough to spray people!
Since your halitosis has only started recently, I'm sure it should be possible to identify the cause and treat it, though this might call for some persistence on your part. I know there are specialist halitosis clinics in some parts of the world, and was wondering whether there was one near you. Also, joining the halitosis forum on this site might be helpful.
I wish you all the very best in your new job - and hope we get further updates. And don't forget - keep trying to find the solution. I know doctors can try and fob you off - hence my having to see three different ophthalmologists in four months before I started getting sensible answers - but polite persistence can pay off.
oly._03278 lily65668
Posted
Thank you, lily.
I, too, have a few people in my life with it. One has had it her entire life and I NEVER notice it. She told me she’s aware of it and will openly talk about if someone gets offended. Another friend I love has it and I don’t care. She’s an amazing person and friend. Funny you say that about the dr—-I went to my ENT once after a BAD day, an interview I think, and he said: “How old were these men?” I told him what I guessed. He said: “Oh! Their breath’s probably worse than yours!” And it was enough to prevent me from focusing on it.
I have major anxiety when I think anyone’s even remotely aware of it:that day happened...today...I was sitting in a meeting with the woman in charge of helping me get acclimated. I always keep the works in my bag (brush, toothpaste, Xylimelts, cinnamon sticks now, biotene spray, etc) abd a ziploc bag of sliced apples....I could slowly feel it coming on...and wondered what had I done differently over the weekend....my beau ordered a pizza. I ate a few slices and wished he hadn’t ordered it. I wondered what it’s feel like to have a normal life again, to save my weekends for eating something I liked (although I’m not a big pizza fan, I’d only eaten apples at work and salads home) and hoped I would t have to pay for it.
I received an email last night telling me there was a meeting held in Ms. Ms’s office (fictional name). I pondered if I should brush and spray prior but took a chance, since last week had gone relatively well and wasn’t really detectable. Her desk is a “center desk,” donut-shaped, so there’s close proximity.
I felt okay, but not comfortable at first. Since this has happened to me, I’ve lost confidence in sitting or talking closely to people, particularly ones I don’t know, and there’s always an overwhelming fear that they’ll do the “nose move” where their fingers go up to their nostrils (always in slow motion in my mind)...what does this do? Increase the anxiety. Which dries my mouth even further. ..I’m ready to crawl under a table, turn away, or leave the room.
I instantly felt depressed. And when I left to go to my car and returned Ms. Ms and two other teachers were whispering, and of course, looking directly at me...I’m not only anxious...sometimes, I’m plain old p***ed and think to myself everything I have a RIGHT to do: “I have a RIGHT to work. I have a RIGHT to pay my bills. I have a RIGHT to live on this earth, and ALONE, if I have to. I have a RIGHT to sit st a table without explanation as to how THIS happened to me. I have a RIGHT to SPEAK if I need to, even if everyone leaves the room. I have a RIGHT to health insurance, a RIGHT to teach children., to laugh, to be private, because that’s just who I am, not because I’m afraid they’ll all ‘find out.’ I have a RIGHT to cry in my car, when the days are overwhelming....I have a RIGHT to be human...” and somewhere out there there are people/coworkers/children who won’t care. This is the biggest social experiment of my life and today, at this very moment, I need to be strong about it, because tomorrow morning at 7:30am EST, there is a faculty meeting and picture, followed by meetings that will last from 8-12:35 pm. And I’ll be walking into a powder keg of whispers, judges, and the like...because the downside of teaching is the gossip...the politics. I’ve foight both and will pray I am strong enough to fight tomorrow too....the oral health probiotic I ordered, along with charcoal toothpaste, isn’t really working as the reviews show...
It’s interesting how we all suffer from one thing abd just when we think our problem is as bad as it gets, there’s someone else who needs us even more...I won’t stop fighting until there’s an answer for this...
Thank you,
Oly.