Sjogrens World Forums

Am I the only one out there who is so obsessed about the dryness in my mouth and the dry swallowing ?  I feel I am constantly trying to maintain moisture in my mouth without success.  It has taken over my life ?  Does this happen with SJS to this degree ?  How do I cope ?  Chewing gum, candies doesn't give any lasting comfort.  I feel like a maniac over this and can't seem to get through it.  How can a change this ?

If you find anything that lasts, let me know.  I am constantly drinking water.

I use Biotin toothpaste, Biotin or oasis mouth wash and carry a spray bottle of Oasis mouth spray.  All of these help.  There was just a discussion on here about sucking on gummy bears.  Some people like the really sour ones, but all that citric acid that makes them sour will destroy your teeth.  I haven't found a good gum yet, don't try the Biotin gum, it doesn't work any better then any other gum and it's flavor lasts about 30 seconds.  Drink lots of fluids as I'm sure you are, but the Biotin gives more relief then water.

Hope this helps.

Peace be with you.
Jennifer

I feel that I should consider myself more fortunate that I have not yet developed the severity of symptoms that some of you are suffering.  I wish I could feel grateful for that.  I almost feel that I would trade this dryness for a pain at this point.  I can't seem to figure out what to eat (hard to swallow), how to go to the bathroom (so constipated), I feel that the more I eat or drink, the drier I make my mouth.  I am losing weight dramatically, and don't know how to stop it.  Just can't keep going on obsessing all the time about how to eat, what to eat, when to eat ( so I stay moist, so I go to the bathroom).  My life seems empty of any other thoughts or concerns.  I don't even recognize myself anymore.  It has happened so suddenly since a surgery I had in August. (maybe set off an autoimmune disorder ?) My head is spinning all the time with thoughts of how to live another 40 years this way.  I can't seem to take care of myself, let alone my poor family which includes a 10 and 12 year old who don't even recognize me anymore !  Docs keep pushing anxiety meds at this point (since no firm diagnosis to explain otherwise)  I know they say can't get any more drier, but the dryness is what is causing my behavior to be so erractic !  Does anyone else feel life has become to challenging for them ?  I don't know where to turn anymore.  I know I sound so desperate for what seems to all to be such a small thing (dry mouth).  But I literally have stopped producing saliva in a matter of weeks and it seems so crazy!  How does one just jump into this new world and cope ?

I use the prescription medicine Evoxac and it helps to produce saliva.  When you are first hit with this syndrome, you have to go through various stages of anger, denial and grieving the loss of something so normal.  It is a very odd thing to not produce enough saliva to chew food and swallow.  Again, I would suggest talking to your doctor about Evoxac and see if the gives you some relief.  Most physicians will treat your symptoms and that will go a long way in helping you manage.

Anna

At the SSF seminar, the doctors all said that we needed to be obsessive about dealing with our dry eyes and mouths, so it sounds like you are doing the right thing!

I agree with Ohiolady that you should look into Evoxac or Salagen (just be warned: Evoxac is pretty expensive; I hear Salagen isn't as bad).  I always say that dry mouth isn't much of an issue for me, but whenever I miss a dose of Evoxac, I realize that it IS a problem; I just don't have to deal with it often because the medication works so well.  If I take my three Evoxac a day (one in the a.m., one in the afternoon, and one before bed), my mouth feels almost normal.  If I miss a dose, however, it becomes dry as can be. 

I take evoxac,, by morning my mouth feels horrible,, slimy, dry, its not pretty,, weird part,, even drinking water anymore makes my mouth feel dryer,, must be the nerve endings in my mouth heading south,, I miss crunchy things,, cant swallow them, you might as well shove dry rice krispies down my throat and tell me to try and swallow them, (Hey Harry, what do we write n teh cause of death,,, )?,, choked to death on rice krispies becasue he was a idiot,, open his head up and see if theres dark matter in there, no one could be that stupid,, ,, hey,, wasent his brother in here last week,, he had dark matter for brains,, this guys probably teh same,, SIGH,,

I was given the Evoxac by that Rheum that didn't feel the necessity for a lip biopsy at this time.  Basically as a binky.  She will not, however, continue to prescibe if I am not diagnosed and a patient.  I find that it make saliva, but the quality of it is thick and sticky.  After it stops producing, I feel I am left with this sticky residue in my mouth, inside of my lips, and throat.  It is such a uncomfortable feeling. It seems that the more I take it, the more I feel that stickiness.  I don't know if that is just the quality of my saliva at this point, or the way it is supposed to be ?  I still don't find I can sleep through the night, even taking it at bedtime.  I still awaken at all odd hours unable to return to sleep.  Almost a month since slept straight through night.  I feel like all I do is plan everying around my mouth and it's moisture.  Terrible way to live. 

Hi Mass,

If the rheumy is unwilling to treat your symptoms (without a label), can you find another rheumy that will?  Will your primary help you out?

I don't have a "dry" mouth per se (my teeth are just awful though - had them rebuilt twice, and the ones I have left are starting to crack and break again, ugh), but my eyes are the worst, so I understand what you mean about being uncomfortable. 

I'm lucky as the rheumy I've seen these last several years has always treated my symptoms even though I'm still sero negative (always have been).  For the first several years, he classified it as SICCA; it's only been the last year or so that he's changed it to SJS.

With any luck, the rheumy at Mass General just might be the one to help you. 

Hang in there, and I'll keep my fingers and toes crossed for you!  And don't forget to keep us updated, okay?

Take care of yourself -

Patze

My mouth dryness was one of the later things I got.  It's gotten very bad in say 3 years.  I do the Evoxac and it's awful expensive even with insurance.  I try to keep it down to 2 a day instead of 3 but I find myself taking 3 more often.  Then there is the sweaty thing that comes with it, usually at night.  Ugh.
I do something we aren't supposed to do and that is drink Diet Coke.  Lots of it.  Bad girl, bad.  I do keep a glass of water by my bedside and it has a straw built into it so if I knock the glass over, it doesn't spill.  It's something a kid would use and like, but it's handy.

I am getting so bad now if I take a nap, I wake up right away with dry throat.  My mouth is not only dry, but my throat and down the gullet.  I have never been able to swallow chewed raw carrots and now I know why.  I always have something to drink while I eat.  Cake is my enemy.  I always seem to bee eating out somewhere when I have cake.  I inhale a crumb or two and my coughing is enough to bring the medics.  Embarrasing.  I do hope you can overcome your obsession with the dry mouth.  In time I think you will.  Lucy

You're definitely not alone.  I've suffered from dry mouth for 22 years and for the first 10 years I had no saliva at all. 
I actually suffered a breakdown over it and people had to keep me from committing suicide.

I don't think there is any way to cope when you have no saliva at all. 
It took me a long time to learn what helps and what makes it worse.  In my case gum, anything other than water, fried foods, meat, garlic, cheese and starches only make the dryness worse. 
I was on Salagen for four years which helped alot.  I also use Biotene toothpaste. 

Hope that helps.

I thank you for your responses.  I am just struggling and so desperate to find a way to cope and deal with or without diagnosis.  I feel changes in my body that are not outwardly displayed.  The Evoxac isn't as fast working as it was even just 1 week ago.  If I don't take it, my mouth/throat are horribly dry.  To take it, if anything happens, it is nothing by gluey.  That in itself is driving me insane.  Then there is nose dryness, eye dryness (soothe XP is what eye dr gave me), vag dryness and now I am unable to go to the bathroom at all.  PCP put me on Miralax.  One more thing that is not working.  I am afraid that without knowing what I have, they are hurting me more than helping me. It is all too much for me at one time to go wrong.  They say my mind and stress is making it worse.  I have no doubt.  But to take meds to calm my mind, I am afraid of it making all these dryness symptoms more unbearable.  My husband is worried about what I am doing, not only to myself, but to my family.  I cannot seem to pull it together, even for them.  I am so sorry.  He is ready to have me placed somewhere to have my state of mind dealt with.  I wish it were as simple.  How will that heal my body.  I'm scared I will never find a coping means.  I don't feel strong enough.  Too many things going wrong at one time.  I can't stop thinking about how awful this can become..  I have had breast cancer, 10 years ago.  I had a breast biopsy in August which fortunately came back as ADH (no cancer).  They collapsed my lung in the process and I was hospitalized for 4 days.  I think that maybe the stress I underwent brought on this constellation of symptoms.  Sept-Oct, I thought it was just acid problems as I had chest/neck tightness.  Coming into Nov, I started having pasty mouth and then boom, week of Thanksgiving, I am waking up every night with extreme dryness unable to sleep at all with mouth pasted shut to now where my eating has been compromised and I am losing weight with not knowing what to buy, what to eat, ..  I wish I could live with someone who has the same problem so they can show me what to do, because no one is my world at work or home can seem to understand and help me.  I'm so sad.....  Have everything else to be grateful for, but still so sad...mourning the loss of my old self constantly.

Mass,, it is overwheling,, especially when everything seems to start going,, it gets to the point that you jsut sit and wonder whats going to hasppen next,, it wears on our minds, it does mine,, its hard to keep it together,, my wife went shopping for christmas dinner a while ago,, asked if I wanted to go with her,, I cant go out in the cold due to the neuropathy, add in the dry mouth, dry eyes,, the pain,, and you do begin to question your saniety, what your feeling is real,,, your starting a journey of getting the help you need,, some of us got it quick,, some struggled fro years with teh problem before the dots were connected, unfortunatley by then,, the damage was done,, I dont want to scare you,, but yes you have a dry mouth,, and it can be so maddening,, you cant eat,, your afraid to eat,, you choke,, you start to advoid stuff that might make you choke,, you get so sick of drinking water,, i am so sick of hearing,, drink more water,,, drink more water,, makes me feel dryer,, house is so dry, I feeel like I ilve in teh sahara, I;d go outside for some moisture,, but its so cold out, it is insane

Hi Mass,

Sending you some soft giant



my friend.

I understand about being afraid of what might be coming down the pike; boy, I was such a nut case when I first joined this forum  (some folks will tell you that I'm still a bit of a nut case! ;) :D).  I tell you, the first few months, I spent a lot of time in the ether's here looking for answers as the rheumy is not a big talker (hard to answers out of him).

I work full-time and to drag myself up and get myself ready to go to work was a nightmare.  Those first several months were so bad that I was often in tears thinking I was loosing my mind (having a GP that kept telling me that there was absolutely nothing wrong made everything that much harder). 

Finally got to see an endo as I had become hypothyroid, and was immediately put on Synthroid that day (had a goiter that was pressing on my throat, and the GP knew this for several months before she finally referred me to an endo.  It was the endo who told me about the scan results and that I had a goiter; how sad is that?).  Had a biopsy of a large nodule on the thyroid done, and it popped up positive for Hashimoto's (things started to make sense).

Now, I know that I'm very lucky as I wound up with a good rheumy right off of the bat, along with a few other doctors that believed me.  I also discovered this site and let me tell you, it was like going from the night to the day...what a difference it's made in my life. 

Sometimes the only thing that you can do is one foot in front of the other or even one day at a time (whew, there are still days where I have to go to do one hour at a time to make it through a work day).  Honest, once your symptoms start to ease, it'll get a bit better.

We understand, and have been down that road in one variation or another.  Please look around the board, and always remember, if you can't find what you're looking for, don't be shy and post away (there's usually someone about that might be able to help).

Take care of yourself and don't forget to keep us updated, okay?

Patze

Perhaps Salagen (pilocarpine) will affect you slightly differently for your saliva problem.

I've taken both, and pilocarpine works fine for me.

But my problem isn't so bad, tho' I have to moisten my mouth and eyes several times a night.

Keep us posted.

Kisses

Elaine

Mass, do you have a humidifier in your bedroom?  My rheumy recommended it to me and I've read here that many find it helps their dry mouth a lot, particularly at night.   Those who live in cold climates spend a lot of time indoors where the humidity is low, and a humidifier can help during the day, too.  I have only a mildly dry mouth, so haven't used one yet.

I noted you use Soothe eye drops, the ones given you by your dr.   Those don't work well for me, so if they're not adequate for you, I encourage you to try others.   Systane and Systane Ultra both work well for me and Costco carries the latter at a better price than drugstores.

As for constipation, in addition to Miralax, be sure to eat TONS of fruit and vegetables, and drink enough fluids.   A daily 20-minute walk, if you can manage it, will help get things moving, too.  It does me, anyway.

I hope you'll get a better Dx soon.  Meanwhile, do what you can to manage the dryness symptoms.

Mass, my mouth seems to have enough saliva a lot of the time, but if I am on the phone, all of a sudden everything becomes dry and I cough, and cannot speak. I just have to CHOKE OUT that I need to go. It's terrible. It's gotten to where I have to have a drink next to me if I plan on being on the phone.

CAT

Dear Mass,
I want to welcome you to the forum and send you a hug.  ;)

No wonder you seem overwhelmed. You've had symptoms getting worse all of a sudden, and it can be "distressing", to say the least.
I takes time to learn what works for you. I understand it can be easy to get obsessed over what to do, use, eat, etc. because this really does affect our whole way of living. I can tell you that stressing over it will make you feel worse, but also know that just telling you that doesn't make it go away!

Perhaps a visit to your PCP might help, if they are good at listening. Tell them how crazy this dryness is making you and see what other options they may have. Good suggestions here already: Biotene products are awesome. I take the spray with me everywhere and it helps more than water. Chapstick type things help the lips, the Biotene mouthwash and toothpaste are great. I know the ropey, sticky saliva feeling, and the fear of actually choking on something. "Slippery" foods are good, like applesauce or yogurt. I like canned and syrupy mixed fruit (one of my little vices) and pudding (and it must be chocolate) Just a thought.
As Patze said, sometimes we just gotta put one foot in front of the other.  We need to be patient with ourselves and sometimes that is hard to do!

Please take care of yourself and keep us posted, ok?
Blessings,

Melinda