Hi there,
This is my first post and I should start by saying that I don't suffer from Sjogren's Syndrome, but my wife does.
My wife and I are going through a pretty rough time presently and one of our key problem areas is intimacy, where for the last 10 years or so she won't kiss me for any longer than about half a second; She's happy to give me a peck goodbye when I leave for work, but not more passionate kissing such as when we (try to!) make love.
I've tried talking to her about it and she says that I 'dribble' when I kiss, which I simply do not accept; I've kissed my share of other girls and have never had that complaint from them - only from my wife. So she complains about the wetness of my mouth and will turn her head away when I try to kiss, which is the best way to reject your partner. She also says that she just doesn't want to kiss any man at all, period.
My wife's mouth is so dry that she keeps a water bottle at her hand pretty much permanently - so my suspicion is that because her mouth is so dry, what she thinks is my 'dribble' is actually just normal saliva wetness... When you kiss, a normal part of that involves your partner's saliva, unless of course they don't have any. To be honest, I'm not sure that she's passionately kissed any guy prior to me anyway - I ask her this question, but she won't answer it.
So I guess I thought I'd throw the question out there to see whether anyone had experienced similar problems?
I will start by saying welcome and commend you on trying to understand what your wife is going through. Sjogren's is dry eyes, dry nose, dry mouth, dry skin, dry bottom. Any gland that produces fluid is involved. There are nervous system involvements and we have balance issues. Since we have issues with sweating, we have to avoid the sun. Our bodies do not produce lubrication during sex so that becomes painful and we try to avoid interaction that may lead to it. We crave gentile touches. While a kiss on the lips may not not be pleasant she may enjoy being held, told that you love her, and small kisses on her neck and shoulder. Some times just being held in a hug. Intimacy with out sex has become my normal for the past 20+ years.
Dry eyes means that tears are often painful so we try not to cry. Our eyes get painful using a computer, watching TV, or in sun light. We deal with sinus infections and the mucus is so thick it is hard to blow out. I sleep in a recliner so I can cough it up when it drains down my throat and blocks my air way suffocating me. Some use a Nettie pot to clean their sinus out. A neck injury prevents me from using one.
Dry mouth means no saliva and tooth loss. You will need a fluid with each bite you take to eat and swallow. My MD looked in my and exclaimed, "OH MY GOD are you dry". I thought I was rather moist. These are daily challenges that we have to live with. Finding the correct soap and skin products is also a challenge.
Pain and Anxiety are common. I use CBT (Cognitive Behavior Therapy) to manage these issues. I also use a simple meditation to control my reactions to my health challenges. I use medications and supplements to help me manage this disease. Good luck with your journey and I hope you can help your wife feel better.
I believe that there are other threads devoted to kissing and other intimacy issues. Use the search bar in the upper right hand corner to find those discussions. All the best to you and your wife!
Until I started the Prednisone and plaquenil, I was so anxious and keyed up all the time . . . kissing could be unpleasant because I felt trapped/smothered. It was very awkward because there was nothing objectively wrong. It's improving now. I'm also taking Wellbutrin and Prozac for the anxiety, but until the Sjogren's treatment, it wasn't enough.
Hi Thomqos,
You kind of do indirectly suffer from Sjogren's Syndrome, as it's affecting your life too.
Do understand that it has a much greater impact on your wife, and the more you understand of the disease, the better for both of you as a couple.
Is she undergoing treatment for Sjogren's? How long has she been suffering the symptoms? I know before I had any medications to help me salivate, my lips were so dry that they were painful, and my mouth/throat dryness forced me to keep my mouth closed as much as possible. The dryness can cause issues with swallowing, eating and talking (at its worst, I couldn't speak a few words without first lubricating my vocal cords with a sip of water). It's such a horrid experience that it can easily overwhelm a person (it certainly did with me), and anxiety levels can increase with dryness levels. If your wife isn't taking medications specifically for the dry mouth, I'd recommend you both go to her doctors and ask for cevimeline or pilocarpine (she may need to experiment with both to find the best, but I'd start with cevimeline if available) as long as she has no other issues that might prevent their use. I credit cevimeline with getting my mouth from cottonball to an almost normal amount of moisture.
Go through this forum and read up about Sjogren's - you'll be better prepared to understand and assist your wife through the ups and downs, and it's good for your marriage. If this is new to her, kissing you might be the least of her worries right now simply due to the challenge of accepting and wrestling with a life of Sjogren's. The more you can understand, the easier it will be for her to grapple with the disease.
Of course, take my comments with a grain of salt. I've been chronically single much longer than I've been chronically ill. Good luck to both of you!
Thanks for your responses guys. That helps a bit.
Sounds like her condition is reasonably mild... Apart from drinking extra water, she takes nothing. She did try some artificial saliva stuff years ago, but said it was atrocious tasting & so didn't continue with it.
She found out about her condition when she was first trying to get pregannt... 15 years ago. Since then, her mouth dryness has progressed, but I'd say only slowly. She does have a bit of trouble with her teeth, presumably because of mouth dryness, but I wouldn't say hugely so.
But I take the point above that there maybe medications which could help.
Welcome Tomqos to the forum.
Here is a link to current guideline or care of Sjogrens patients. https://www.sjogrens.org/files/research/RheumatologyCPG.pdf
There is information on the "sicca symptoms" recommending or oral.
P.534 "Recommendations: To develop CPGs for caries prophylaxis in SD, the Oral Working Group reviewed dental literature concerning the use of fluoride, salivary stimulation, antimicrobials, and remineralizing agents."
* Your wife can take the guidelines to her dentist, eye Dr. etc
Google saliva.. I never would have known what it really consisted of, nor the important role it play as the front player in the digestives process.
Then there is the dryness of the tongue and subtle to severe loss of taste .. so saliva more that just spit..
For some dryness of the eyes, the cornea follows suit before any of the usual symptoms that prompt us to seek an exam.
Pilocarine helps with production saliva, and can help with eye dryness.
Another aspect as has been mentioned is vaginal dryness.
Please have you wife read the guideline. She should have labs (every 6 months or so) to monitor SJS.
Often some of the symptoms present in an insidious manner and we get use to them...until for some they interfere with quality of life.
However, you have found the forum and can chose to be proactive rather reactive to symptoms and the disease.
* SJS patients, and other autoimmune patients tend to be low in VitD3 and B's, at next GP appt she can request labs to check that.. to prevent bone loss (includes jaw bone, and teeth), a 'good' daily vitamin would be proactive after and depending on what labs show.
If your wife's' symptoms are currently mild.. it would be great to manage the disease to keep it there on spectrum.
Hello, Thomqos. Your wife's story has remainded me my symptoms. I also have mild-moderate dryness symptoms and I have been recently diagnosed although I have had symptons for six years. My partner noticed that I refused "wet" kisses during the last years, uncounciously I was only comfortable with kisses on the lips. I didn't paid attention to this. But now that I know that I have Sjogren's, I realize that of course it has relation with my mouth dryness. It seems that the gland damage is slight and mild at the beginning and you don't realize, merely your body and brain adapt to the situation. That explains why in my case, for example, I was always the last person finishing having dinner or lunch because I needed to chew for a long time, why I drank a lot of water during the day, or why I always sipped while eating. Of course when this happens to you, you don't think you have a disease. You only think that you are like this.