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
Dawsons_mom oly._03278
Posted
paminela oly._03278
Posted
Hi there! I have switched to a charcoal based toothpaste. My teeth have never looked whiter and my mouth has never felt cleaner. I know that Sjogren's can really mess with your mouth and it was starting to, so I went to the charcoal right away following the advice of another Sjogren's friend. It has helped immensely. As far as bad breath I would think this would help in that category as well. The toothpaste is called Great Home Activated Charcoal Teeth Whitening Toothpaste Natural Organic Black Bamboo Charcoal Tooth Paste. Hope this helps you!
Megheart paminela
Posted
It's a paradox! Black toothpaste for whiter teeth. 😁
sixty oly._03278
Posted
Oly, I feel so bad for you and I also relate to everything you say. I have horrible breath from this disease and I also have the good fortune of having periodontal disease. The plaque from that is awful smelling. I constantly drink water due to thirst and just the dry feeling. I used to go to a periodontist before when I worked for every three month cleanings. They scraped the plaque under my gums and cleaned my teeth as best they could, but I still had bad breath. It's been 10 years since I've been to a dentist because I am just so hopeless about it. It's embarrassing and I don't think there's anything I can do but have all my teeth pulled. Most dentist won't do that from what I hear. So between the sjogrens and periodontal I am up a creek. Now I try to always chew gum if I'm going to be in the public. I'm single so I don't have a spouse to offend, just my sweet dog. I don't know how much the gum helps because it's too embarrassing to talk about to anyone. I hate this so much! Anyway, the best to you and you're not alone!
oly._03278 sixty
Posted
Oh My . GOODNESS . I cannot tell you how it feels to finally havecanother person who suffers from bad breath bevause of this i dont know about you, but I WAKE UP with a horrible taste in my mouth. It makes me cry every single time. My dentist says i dont have periodontal disease. BUT i KNOW something isnt right, because ive never had bad breath, until i was diagnosed with SJOGRENS . It is the most embarrassing thing ive ever endured ive quit multiple jobs because of it and have anxiety now since i wrote the post above, Ive managed a little better, but perhaps bevause im not working right now . While looking for jobs, I make a mental list of what i can and cannot do, based on which will be the most to least embarrassing, how much talking it involves, and how much socializing i would have to do Its changed my personality and I developed self-esteem issues . It's awful . I would love to hear more about your struggles as well. I am in a more peaceful place in my life. TRUE LOVE is out there . TRUST ME. I cannot thank you enough for sharing this and cant wait to hear more .
oly._03278 sixty
Posted
Hi its been a long time have you managed to get some relief? i am stull dealing with bad breath, but ive stopped quitting my jobs because of it. I have to work and am trying to live my life as best i can, but it does push people away. There are a few people in my life who treat me no differently and that means a lot. My sister suffers from it too and she just told me this year. She was too embarrassed. She has periodontal disease too but hasn't been checked for Sjogrens or any other autoimmune illness. But she should. I would like fo know how everyone on this board is doing. I see a new Rheumotologist today and am going to see if he can help. The journey never ends
sixty oly._03278
Posted
I hate it when I'm talking to someone and I forget to stay a certain distance away. They suddenly get that look on their face like they just experienced something unpleasant. I got too close! It sucks! A number of years ago my normally sweet and loving mother sat me down to ask me not to use her toothpaste. It was confusing to me because I hate the brand she uses and she knows it. Anyway it was such an odd request, but after some thought I figured out she was afraid if her paste touched my toothbrush, she might catch my bad breath! It still haunts me to think of that conversation and how mean it felt, from my own mother. I remember my dad had awful breath and maybe I inherited something from him that causes it. I do know he had gout which I think is an autoimmune illness. I recently met my grandson for the first time and I constantly chew gum around him because I don't want him to be afraid to get close to me. He is so cute and sweet it would break my heart if he thought I was gross. Anyway, thanks for listening to me Oly! Peace
oly._03278 sixty
Posted
SIXTY. I am so sorry to hear that. I have been able to come to terms with the fact that people (for the most part) wont try to understand anything past the common illnesses. Everything else they look at you dismissively. I have been blessed to have mdt people throughout this process who are right there with me . I have always felt sjogrens was a social experiment in empathy. SOME will have it Some wont . But how good we are to ourselves has nothing to do with who THEY are . Dont let them steal your VOICE. Sjogrens is tough and I hate having it. But find a way through it. The rest of us will be here cheering you on.
sixty oly._03278
Posted
Thanks for the kind reply oly. It feels very good to have that understanding from this group. I really can't talk about it to anyone else. Your theory of Sjogrens being an experiment in empathy is spot on!
oly._03278 sixty
Posted
sixty. If you ever need someone to talk to, I am here. We have to be our own cheerleaders It's also healthy to get rid of toxic people . I was married and dated one for years and cant wait to never have to see him again: arrogant, deceptive, and narcissistic . I might smoke a cigar when it's over . I think when you're around them, their toxicity dis-eases you. Their Energy is just.....off. We all have them and it's best to protect yourself from the slightest interaction. In your case, choose how you want to feel and the people who don't make you feel that way or choose to ignore your boundaries are not deserving of your space. Because in the end, its YOUR space, whether it is your house, your car, your mailbox, your sofa, and toothbrush! DOGGONIT! It's yours! I am sending this to let you know you are in my thoughts and every now and then we need a message when we least expect it to keep us going. I am cheering for you, sixty. All the way to the finish line . with peace, Oly.
Sjogren1 oly._03278
Posted
I wanted to just say Hi, Oly and Sixty and others. I share your pain and feel my life has been devastated by Sjogren's and dry mouth. After 4 years of wondering what my problem is, I've only recently in the past few months actually gotten a diagnosis. I was so desperately hoping pilocarpine would be the answer, but 5 weeks in, I'm not finding relief for my taboo, life-altering, depressing problem. I keep wanting an analogy, feeling like some desperate elephant man, with an unseen but very real problem. I take comfort in the possibilty of building some community with others. More at a later time. Sending many positive thoughts and wishes.
oly._03278 Sjogren1
Posted
HI
THANK YOU
Was depression your only symptom? What was your first sign that something was wrong? did you have any other symptoms and how were you finally diagnosed? I think having others to reach out to helps . I have my moments, but i am not as intimidated by sjogrens as i used to be. THE CRAPPY part is that you never know how youre going to wake up....thank you for joining us
dena64643 oly._03278
Posted
Try sucking on whole cloves. It may help. Especially when you know you will be in public.
sixty oly._03278
Posted
Why are the last two posts deleted?
lily65668 sixty
Posted
This usually happens because someone has mentioned a clinic or proprietary brand (advertising) or because they've given personal information, e.g. their phone number or email address.