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Oral complaints in progressive systemic sclerosis


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#1 janey

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Posted 14 April 2008 - 09:05 AM

Oral complaints in progressive systemic sclerosis: two cases report.

Aesthetic and facial dysfunction are followed by important oral and facial manifestation of disturbances such as xerostomia, the lack of saliva in the mouth, and its associated complications. (PubMed) Med Oral Patol Oral Cir Bucal. 2008 Feb 1;13(2):E114-8. (Also see: Dental Involvement and Diffuse Scleroderma)

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


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#2 betty32506

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Posted 15 April 2008 - 08:04 AM

:unsure: I have problems with my mouth. The dentist was no help at all. I have a minor problem with sclera.

Researching I have found Burning mouth syndrome and that describes part of my problems except that it does not burn like with heat but like hot peppers would do. Eating triggers it and the pain is not in keeping with reality. For example a piece of pizza that had pepperoni on it but was removed will burn very bad.

Also, I have a row of small blister like lesions on the under side if my lips. They feel like fever blisters.

I sometimes "bite" my jaw and there is what the dentist said was callouses on the jaw. Sometimes when I have my mouth open it will only close partially. I free it up with a finger on the inside jaw. This happens mostly when I am in bed.

Does this make sense to anyone.
Betty

#3 mando621

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Posted 16 April 2008 - 06:32 AM

One of my main complaints is burning mouth syndrome. I went to my family doctor and she referred me to a neurologist at first. That did no good.

I'm seeing GI in May. GERD can cause burning mouth syndrome. Since I don't feel like I have heartburn all the time, I didn't think it was this. Now, I'm getting checked out.

The burning is constant for me. It feels a little like I scalded my mouth with a hot drink, or like you said, ate a handful of hot peppers. I've been told that there isn't anything I can do for the problem.

At first it really bothered me, enough that I wondered if I was going to be able to survive the constant pain and irritation. Now, I've more or less come to accept the problem, and I can even ignore it some of the time.

#4 betty32506

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Posted 16 April 2008 - 07:36 AM

It never occurred to me until recently that it could be related to my other problems. I can't find a toothpaste that I can tolerate long enough to do a decent job. I tried baking soda but that leaves me feeling like I didn't brush. Does anybody have a suggestion? I have a collection of toothpaste already. Are there children's toothpaste that are bland?
Biting my jaw is becoming more and more a problem. That was why I checked with the dentist as I was due for a checkup. The dentist said he would check it out and call me. Didn't happen.

Betty

#5 Kaycee

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Posted 16 April 2008 - 10:11 AM

I've never experienced the burning mouth so I can't say I know how you feel. They do make children's toothpaste so it doesn't harm them if swallowed. I have some for my granddaughter and it is a bubblegum flavor. Right now I use an electric toothbruch that has a smaller head that fits in my mouth better. Since the head is small, I don't use as much toothpaste and that may be why it doesn't burn me. The burning being a gastro problem seems feasible to me since the gastrointestional tract begins at the mouth. As for a compassionate dentist, I do have one. He is great. When I was first diagnosed, he had heard about scleroderma but he took his own time to research it so that he can customize my treatment. Now I have been a patient of his for 30 years, but he has a thriving and growing practice. So to take time to research how to treat one patient meant a lot to me. Hopefully you all will find someone just as willing to work with you.
Much love,

Kim


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#6 peanut

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Posted 16 April 2008 - 11:29 AM

Hey all,
Betty you might try researching Lysine for your oral sores - I take it daily and it took mine away. Also, be careful with those fancy whitening, tarter control tooth pastes as they can create more sensitivity in both your teeth and mouth. I use a simple natural toothpaste that has as little chemicals as possible and the kid's strawberry flavor is very mild. They also makes a mild apricot dry mouth toothpaste, which I use. PM if you would like the name. Actually, you don't really have to use toothpaste at all if you don't want to...

peanut

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my HMO makes me wear a helmet...

#7 betty32506

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Posted 16 April 2008 - 05:22 PM

Thanks for all the responses. When I went to the dentist which was a couple weeks ago I did not connect the problems to autoimmune system but I did tell him that I had autoimmune problems.

From the recesses of my mind I remember lysine and I will look into that. I use a small electric toothbrush also and use very little toothpaste, I have tried the simpler toothpastes that appear to have little extra stuff that is sometimes added. I tried Sensodyne but that is the same. They used the kids cleaning agent when they cleaned my teeth and it was OK. I will check out the kids stuff. I use a water pick also and sometimes I brush with just water. But my teeth just don't feel like I clean them even now that it has been such a short time I was at the dentist.

Another odd thing is that many times the food taste like it has an ingredient that I don't like. That gives it an odd flavor. That I had not considered to be part of the problem but rather that "my taster isn't working".

I was wondering what doctor area this would be in. I thought it may be dental, but wondered if it was neurological or rheumatoid. I just found the burning mouth syndrome a few days ago and wonder why the dentist would not know about it. I guess it doesn't matter if there is nothing that can be done about it anyway. I sure don't like the idea of always having this. At least it does not burn all the time but is triggered by what goes in my mouth.

Betty

#8 betty32506

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Posted 16 April 2008 - 05:25 PM

Peanut,
Yes I would like the name and source of the toothpaste you use. Thanks
Betty

#9 Karenlee

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Posted 17 April 2008 - 01:39 AM

Hi everyone,

I don't have the sensitive/burning mouth but just throwing an idea out there for you. When I have canker sores I would rub a numbing solution on them and around the gums. I forget the name but you can find it in the drug store and it's in the first aid aisle. Maybe rubing that on your gums before brushing would help.

Karen

#10 betty32506

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Posted 17 April 2008 - 04:55 AM

Karen,
Thanks for the suggestion. I have tried a toothache medicine. Since the problem involves the entire mouth didn' help much,
Betty

#11 mando621

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Posted 17 April 2008 - 06:23 AM

My dentist recommends toothpaste without Sodium Lauryl Sulphate, the foaming agent. This does help if I watch what I use. My daughter has problems with canker sores and she likes a brand for sensitive mouth/canker sores. It doesn't have any SLS and it does a good job. Not everyone carries it, but I bet they would get it if you asked.

I use an electric toothbrush without toothpaste. My dentist says it works better without toothpaste, so that is my best advise.

Toothpaste isn't really as necessary as the manufacturers would like us to think. Removing the food debris and getting plaque off is the most important part of brushing and flossing.

Biotene toothpaste is formuated for dry mouth and it doesn't make my condition worse, I just don't care for the taste too much.

So far, even with all my problems, I have had good dental checkups. One cavity recently in over 10 years. I'm starting to find that the whole check-up process is a problem. I can't keep my mouth open for that long without it being really uncomfortable. I've also noticed lately that my lips are really pulling back on my teeth and the teeth are shifting around. Sometimes I wake up with my front teeth actually touching. A couple hours later and things are back where they should be. I'm finding this a little disturbing. I'm going to talk about getting some type of retainer to see if that helps.

I hope you find a solution.

Mando.

#12 debonair susie

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Posted 17 April 2008 - 06:38 AM

Hi Kim... I'm Susie and it's nice to meet you!

I'm planning on getting 2 of the toothbrushes you spoke of here.... One for our toy poodle and one or me! The size would be perfect for both of us! I know her teeth weren't brushed by her previous peeps because she isn't fussy about it being done. Since poodles are sometimes predisposed to dental problems, I figured she and I could be in this... together :rolleyes:

I deal withburning mouth too... some days/evenings, it's pretty miserable too :(

Hope you have a good day, everyone! :)
Hugs, Susie
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#13 jefa

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Posted 17 April 2008 - 07:11 AM

Hi, folks. Just a quick note - we have edited out several brand names in the posts from this thread in keeping with our guidelines. Only brand names of products listed on our site pages are allowed.

The links Janey gave you, in particular the one on dental involvement, have a lot of useful information.

I have stopped using any kind of dentifrice, though occasionally I use a mixture of baking soda and salt (thrifty practice from my childhood). I use this if my mouth is feeling particularly acid in the morning. Usually, though, I just use warm water and the brush (a small head, soft bristles). About once a week I use a mouthwash of diluted hydrogen peroxide, something I learned from my old dentist.
Warm wishes,
Jefa

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#14 betty32506

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Posted 19 April 2008 - 12:52 PM

I'm sorry about all the brand names. I didn't mean to.

My episodes of burning mouth escalated but I had not actually tried to look into it. I would not have connected it to autoimmune stuff. I went to the dentist and he was of no help. (I think he should have known). I found burning mouth syndrome and Janey's post came just at the right time for me. I think I followed every trail those references pointed to.

I had in times long past used baking soda and salt. The salt burns me. Tried peroxide, oooohhhh :huh: I tried several toothpastes using the ones with the least ingredients.

Plain water leaves me feeling like I haven't done anything. It maybe that I will just have to get used to it like that. Today I bought one more tube of past from the kiddie isle...bubble gum. I used it once without a problem. Whether my teeth feel any cleaner is still undecided.

This is just a summary of where I have been with this. I appreciate all the input from this site. Thankfully I have almost not indications of sclero and it is based on labs. My top lip seems to be drawing in so that I feel it when opening my mouth.

Thanks again
Betty

#15 Sweet

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Posted 19 April 2008 - 04:33 PM

Oh excellent info. Janey, love your new kitty pic. :)
Warm and gentle hugs,

Pamela
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#16 Bill

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Posted 19 April 2008 - 09:33 PM

If you haven't tried milk of magnesia for tooth "paste", I think your missoing a good alternative. Shake the bottle before you use it because it settles.

#17 relicmom1

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Posted 20 April 2008 - 03:25 AM

Hello all!! I have lost all of my teeth and full dentures from having the dry mouth. My dentist was wonderful during the time we tried to save my teeth. He was well informed and schooled on the scleroderma complications in my dental care. My teeth just dissolved and crumbled. We tried for about 5 years to save them, with no luck. I now have full dentures. I will be 50 next month and have had these dentures for almost 3 years. I wanted implants but they said I couldn't have them because of the scleroderma. I have also had jaw bone loss. I have had a couple of surgeries due to that as well. I use the Biotene mouthwash and moisturizing gel. I use the gel mainly at night because I have sleep apnea and use a cpap machine and my mouth gets desert dry at night. The gel really helps alot. I carry a small bottle of the mouthwash with me and I also have a Biotene liquid I carry as well. When I was trying to save my teeth my dentist recommended a mouthwash that helps keep the bacteria in check. If you would like the name, just PM me and I'll be glad to give you the name. I still have lots of problems with my mouth due to the dryness. I get lots of sores on my gums underneath my dentures and on the roof of my mouth, but I manage them with the numbing toothache gel you can buy and the Biotene products.
Peace :)
Barbara aka relicmom1

#18 mando621

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Posted 20 April 2008 - 12:09 PM

For those with oral problems, do you notice your teeth moving more? I notice that my teeth seem to be moving especially at night. I wake up with my top teeth hitting the bottom, in the front of my mouth. My lips seem to be so tight, they pull my teeth in. I sometimes pull gently at the bottom of my top teeth to get them straight again.

I see the dentist in a couple weeks, I'm going to bring it up with him. I wonder if I'm getting the thinner lips. I look back at pictures of me, and my mouth seems so thin compared to earlier. My nose is getting thinner too. The changes aren't hugely drastic, so I'm sure people around me barely notice.

As to burning mouth. I found it nearly intolerable for about a year and a half. Then I gradually became "less aware" of the condition, putting it in the back of my mind instead of dwelling on it. It is hard not to dwell on the fact that it feels like you could shoot flames like a dragon if you breathed on someone, but it is possible.

I found that I was so despondent about my mouth problems that it was making everything else worse. I lost my interest in many things. I'm sure I was depressed, who wouldn't be. Anyway... at least now, I find that I can put it in "non-active" thought area, and get on with things. I'm still frustrated that there isn't anything to do about it. I carry water around at school, I don't do the "everyone read this out loud" at church, I sing the good songs and hum those that are so so, I stop while talking to close my mouth and remoisten things (someone told me about this, I didn't really notice I was doing it).

My mouth is so dry, I almost never swallow unless I'm drinking or eating. I try to hold any saliva I have in my mouth to keep it moister. They did a scan of my salivary glands and Partoid gland once, and it was probably one of my good days. They never did a test where you spit into a container for a period of time, not swallowing. I'd fail that miserably. I can barely spit something out of my mouth if I get something gritty in it.

Biotene mouth wash does have a tendency to go rancid if you ever keep it a long time, which I found out the hard way at school one time. YUCK!

Best wishes.

Mando