Still a Newbie but Thank Goodness for this Site

[Chico]

Well I'm just a few weeks along with my diagnosis and having more downs than ups trying to do everything possible. Have been reading everything I can on this site and also the Foundation book. Spending a lot at Rite Aid on supplies.
A big setback was canker sores on tongue this time returning last Sat.  Dr. on Tues. Finally found the recommendation on this site for Aphthasol, Dr. prescribed but it took until yesterday to get it. No local pharmacies had it in stock.
Hope it works, seems to dull very painful pain but last sores took three weeks to heal. Early Oct. but have had steadily since May.
Meanwhile, tried to get off trazadone but found going under 3 a day wrecked havoc in my emotions and I couldn't sleep. But down from 5.
Am also cut out nicorette gum, can you believe I've been chewing it since I quit smoking in 2000? (If it's bad for me I tend to get hooked.)
All foods except over cooked whole wheat pasta out this week because of mouth pain. Most good things like sugar, chocolate, alcohol, even soft drinks gone months ago. This week went my herbal fruited teas. I drank 3 pitchers a day plus water constantly.
Down to 1 very small cup of coffee in morning.
Also clearing "poisons" from house. Seemingly harmless things a year ago, for instance candles, soaps, even shower sprays now set me off.  Am worn out.
Question: What good things can I eat and drink safely? Esp. during mouth sores episodes. Know one can't heal by pasta alone, even with a multiple vitamin.  Hope to get to a maintenance level rather than a week off and then  three weeks on with the sores.
Does anyone else get pale lips before an episode?
And oh, please let me keep the Pups.
Discouraged, but still willing to try most anything. Thanks.

[Scottietottie]

Hi Chico 

I'm glad you're finding the site useful. SjS is so individual though that what is happening to you does not happen to everyone. I know if I get mouth sores that the sugar has to go, but I haven't really changed anything else apart from preferring 'wet food' to dry. When my mouth is sore I like yogurt. It slips down easy and stimulates a bit of saliva too. Some home made soups are OK too. So saying, I've never had the same problem with my mouth that you are experiencing.

Someone more helpful will prolly come along soon.

Take care - Scottie 

[Billydude]

Chico,  there is a great gum I buy from the drugstore in the toothpaste section.  Its called Biotene Dry Mouth gum.  I recommend it!
Steve

[Maggie12]

   Can you get this in the U.K. plus ......... I have upper dentures, I would love to chew gum, but my dentures will not let me.    a vicious circle.

[Maggie12]

Chico............ sorry .. good luck... we are here to help if we can. keep reading. lots to learn and help with your symptoms. I am quite new in the past 6 months, and I still read daily, I wish you well, Maggie... U.K.

[Katybarstool]

Hi Maggie

The Biotene Gum is available in the UK. I got a sample at the Sjogren's confernece in Birmingham a few weeks ago. I tried it and it was good - even though I have a full set of dentures.

Kathyx

[SeaBreeze]

Hi...
If you find Biotene products you may want to look for the mouthwash, very soothing to rinse with...
If my mouth is sore I have to keep my food simple too.  I poach my chicken, eat it with spinach and some brown rice, perhaps add a little chicken broth to keep moist... oatmeal, mashed potato, yogurts, cottage cheese and peaches, instant breakfast.  I have to stop anything with acid in it; fruits and such.. good luck

[eyeamdry]

Chico-Reading your post about canker sores brought back memories.  Bad memories.  I've always been prone to canker sores, even as a kid.  Mostly, I remember about 15 years ago, I had several years where I was tortured by large numbers of canker sores.  I tried everything and went to all kinds of doctors.  All I heard was "there is some kind of stressors on your body."  I did not have any personal things going on, so it didn't make sense.

Now, I was dx two years ago with Sjogrens and I now believe that was Sjogrens speaking to me. I've never had such a large amount again, either before or after diagnosis.  I occasionally get one now and then.  I hate them.  Lucy

[Jesse88]

Chico, it sounds like you're having a really bad time with the canker sores.  Have you started any medication to treat your Sjogren's?  For some people, getting their disease under control stops the canker sores.  Once you start meds, it may take a while to get into your system, but then you might start getting some relief.   I'm really sorry you're having so much trouble.  It sounds just awful.

[Chico]

Thank you all very much for your helpful  responses. Am on as many of the Biotene products as I could find.
Bought all the Biotene gum Rite Aid had in stock. It was working well instead of nicorette.  Guess what?  The gum aggravates the canker sores as much as the sugar free hard candies my Dr. suggested.
Am miserable with pain today, afraid am running hubby off this weekend I'm so cranky.
I wonder what meds I could be on for Sjogren's that would help the cankers cease?  Would appreciate specifics as I'm back to Dr. tomorrow for a followup.
Mealwhile chicken, rice , cottage cheese and spinach sound very good for changes from plain noodles. Off to the store for them.
Thanks again.

[Billydude]

I'm sorry Chico.  I guess that was a bad suggestion to you then.
Steve

[Chico]

Steve,
The gum will be great as soon as I get these sores gone. Really enjoy chewing gum normally esp. since not smoking for 8 long years. Until then even plain water can bother me.  Oh Woe...

[Sjenny]

Chico,

My husband has a cure for canker sores but it is BRUTAL.  The cure is nearly as painful as the disease.  You take alum (the white pickling spice powder) and grind it into the canker sore, even taking off a layer of skin.  Then you stand over the sink drooling uncontrollably (yes, even with Sjogren's, you will have saliva you never thought possible).  Then you jump around in terrible pain for a while with throbbing nerve endings and then the sore just heals.  My husband claims it kills the virus.  Sometimes I opt just to suffer with the canker sore.

Sue

[pudmott]

Chico,

There's a few things that i have done that  will share. i don't know of any specific meds that you can use to get rid of them but i often use babies teething gel to numb them and give me some relief. In Australia we call it bonjella but sure what you guys call it. Also i often use a mouth rinse with an anaesthtic in it. you can also get lozenges with the same. it numbs the mouh and might give you some relief.

I often also rins with salt water. a bit n the ouchy side but effective. Mouth ulcers are a sign that your body is run down. I have a few on my tongue right now cause i have  sinus infection. they varen't pleasant. Have you checked your mouth for candida also? this could be adding to your woes. have you doc check your mouth.

Goodluck i hope they go soon

Pud

[TJMAC]

Welcome to my world Chico.I have tried the baking soda trick listed below.They didn't go away but it took the pain away.I hope it helps you.Teresa.I don't really know how to insert a link but I will try
http://www.howtodothings.com/health-and-fitness/a993-canker-sore-treatment---healing-and-prevention-.html