Author Topic: Why does my mouth hurt? Can someone explain?  (Read 12383 times)

deeindiana

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Why does my mouth hurt? Can someone explain?
« on: September 17, 2010, 12:46:33 PM »
Can someone explain to me why my mouth hurts/burns all the time? What is the medical reason? I really just don't understand what is causing the pain. At this moment, there are no obvious sores or blisters. It looks fairly normal except for tiny taste buds around the edge of my tongue that are ragged and red.  And now that I've been taking the Salagen I've got a little saliva. The inside of my mouth doesn't "look" that bad but it hurts/burns like heck ALL the time.

I could take a pen and trace a line on my lips where it changes from outside facial skin (no pain) to inner membrane (pain). Everything inside that line hurts/burns. It hurts to kiss my husband. The inside of my lips (especially the upper) throb. The roof of my mouth feels like it's blistered but a look in the mirror shows only a slight reddness. The edge and tip of my tongue burn like fire.

As the day goes on, my neck starts to hurt: along the sides to my bra strap, under my earlobe, wrapping around the front. By evening, I'm using a heating pad. Combined with the hurting/burning mouth, I'm pretty worthless for the rest of the evening.

What is causing it? I've been dealing with this since my SS started in March. I started Plaquenil a week ago (at a half dose and working up to 200mg a day). Do you think that will that eventually help me? I'm so tired of the constant pain/burning.
Deb
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...

newhorizons

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Re: Why does my mouth hurt? Can someone explain?
« Reply #1 on: September 17, 2010, 01:21:33 PM »
Deb, Had a terrible last 6 months of 09 with mouth issues. Got pilocarpine (Salagen) RX at Duke when there in May plus lower eyes plugged.

Consensus over there was the surgery I had on both eyes to replace lens had caused trauma and system was reacting...

Long story made short... Duke corneal specialist I have had for 10-12 yrs. plugged lower ducts and rheumy gave me the P to help make saliva and hopefully help some with eye dryness. WORKED!!! :)

My tongue continues to burn.  Someone mentioned on site that the burning sensation might make one want to push against front upper teeth.  SCORE ONE FOR THE SJOGGIE TEAM. That is what I have a tendency to do thinking it will stop pain; whereas, it only makes tongue feel raw. Visual inspection does reveal redness...

When my upper lip tingles, I attribute this to PN and it usually causes the tongue to have mobility issues with moving food to back of my mouth to swallow.

 Have stopped the mouth ulcers with tea-tree oil toothpaste and sometimes when had really bad ulcer I'd put Q-tip with liquid tea tree oil purchased at Walmart directly on ulcer.
BTW, tea-tree oil fights fungal infections.

Does any of this shed any light on your mouth issue?  ;)    new horizons aka/Joy
« Last Edit: September 17, 2010, 07:20:11 PM by newhorizons »

navydad

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Re: Why does my mouth hurt? Can someone explain?
« Reply #2 on: September 17, 2010, 01:57:52 PM »
my mouth never stops burning,,, this morning it was the lips that were numb,, I think its from the neuropathy,,, mornings are worst,, i caant explain it,, and dont think the doctors can either, sucks not being able to eat and enjoy it,, who wants to sit in a restuarant and suck the food off the roof of your mouth,, or gag on it,, forget cake,, thats the worst for me,, might as well try eating a dry sponge

kwolfsheimer

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Re: Why does my mouth hurt? Can someone explain?
« Reply #3 on: September 17, 2010, 04:17:41 PM »
I have always had an extremely sore throat.  I don't think I ever realized how dry my mouth really was, but now it's bone dry.  I can't even wet my food.  It has gotten to where I choke on my food and inhale crumbs which makes for a horrible choking feeling.  My throat looks like I have red spider veins all over the back.

If you don't have mouth ulcers-- hang on.  I don't have ulcers in the sense of holes but I do have several painful "growths'  where supposedly my ducts have become plugged and swollen.  Plus I had my tonsils out in April but the doc left behind some tonsilar tissue and this blows up like a bullfrog when I get viral infections (which is all the time).  My tongue tingles.

I have noticed that my face burns when I use certain moisturizer creams.

I don't know what to tell you.  I have tried gargling at night with Biotene. I also have found that Orbit Mist gum works well on the spot for some instant hydration.  I am beginning to understand that no amount of plain water really replaces spit. Using a humidifier at night helps some and keep water by the bed.

The neck is probably your paratoid gland (saliva gland).  For years mine has swelled like a walnut-- it seems like that might have been an early indicator of Sjogren's.  In fact, in reviewing my records from years ago, my doc-in-the-box had done a CT scan on the gland and the radiologist had noticed "sicca syndrome"-- of course, I didn't know what sicca was or I could have saved myself years of no diagnosis.  Heat definitely feels better but I'm not sure if it helps or hurts the swelling.

Prairie Gal

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Re: Why does my mouth hurt? Can someone explain?
« Reply #4 on: September 17, 2010, 04:57:42 PM »
Deb, do you have adequate saliva?  It protects our mouths.  Many here take Exovac or Salagen to produce more saliva, so maybe one of them can answer whether these help their mouths feel better.

 I don't need to take either drug because after 4+ months on Plaquenil, I had a lot more saliva.  I was fortunate to be Dx'd quite early before my salivary glands were affected too much.

72 y/o F; SjS; Raynaud's; Lichen Sclerosus; Prilosec; Flexeril; Clobetasol; Lisinopril. ToCo-Q 10; MegaEFA; Black Currant seed oil; 5-HTP; SAM-e; Slo-Mg; Vit D3; Calcium; Aleve; 81 mg aspirin; multi-vitamin/mineral; Vit. B1,3, 6 & 12.

Pegasus47

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Re: Why does my mouth hurt? Can someone explain?
« Reply #5 on: September 17, 2010, 07:11:57 PM »
Hi newhorizons:

Thanks for the tip.

I do have mouth ulcers and will try Tea Tree Oil.  Learning something new everyday.

Pegasus

JayBee

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Re: Why does my mouth hurt? Can someone explain?
« Reply #6 on: September 17, 2010, 11:11:47 PM »
Wow, thanks to all who commented. I am new to the group (have SJS wioith some Lupus elemments) and honestly I could have written any of these posts.  I am going nuts with mouth throat, and tongue pain.  I am not interested in eating much and depend on coffee to start the day (for the heat mostly) and relieve the mouth pain and applesauce during the day because it also feels good going down.  I will also be shopping for some tea tree oil tomorrow.   I will also ask my doc about Mycelex Troches, a table that melts on your tongue and fights fungal infections of the mouth giving instant relief. Just heard about these so I don't know any more than that.  Thanks SO much for sharing and showing me I am not by myself in this craziness.
JayBee

deeindiana

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Re: Why does my mouth hurt? Can someone explain?
« Reply #7 on: September 18, 2010, 01:46:20 PM »
All these are great suggestions. Thank you. But I wish I could figure out the medical reason my mouth hurts/burns. Inflamed nerves? My symptoms are almost exactly like Burning Mouth Syndrome https://www.mayoclinic.com/health/burning-mouth-syndrome/DS00462, but there doesn't seem to be a definitive reason for it.

Have any of you gotten relief when the Plaquenil kicked in?
Deb
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...

Prairie Gal

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Re: Why does my mouth hurt? Can someone explain?
« Reply #8 on: September 18, 2010, 06:24:30 PM »
Deb, we get various symptoms that drs. can't explain, unfortunately.  I asked my rheumy why I often wake up at night cramped, achy, and stiff as a board.  He said he didn't know.  He recommended I take Flexeril (Rx) a couple of hours before bed and noted he takes it for his back; said it works great.   Most nights, it helps.  Some nights it doesn't.

SjS hits each of us slightly differently and drs. can only treat the symptoms.  Maybe some day they'll figure out why we get them.  Wouldn't that be great?!
72 y/o F; SjS; Raynaud's; Lichen Sclerosus; Prilosec; Flexeril; Clobetasol; Lisinopril. ToCo-Q 10; MegaEFA; Black Currant seed oil; 5-HTP; SAM-e; Slo-Mg; Vit D3; Calcium; Aleve; 81 mg aspirin; multi-vitamin/mineral; Vit. B1,3, 6 & 12.

Navigator

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Re: Why does my mouth hurt? Can someone explain?
« Reply #9 on: September 18, 2010, 08:09:24 PM »
Does your mouth get worse over night? I find I have to use Biotine gel every night...coat my tongue or I have a burning tongue in the day.. The tongue tends to repair itself fairly quickly if it is tended to.  You may also have an acid condition in your mouth as a result of lack of saliva. My rheumy reccommended a water and  baking soda rinse every so often to change the ph.  Just mix it out and swish it around and spit out.

If it is ulcers (and I tend to get those in my mucosa fairly often) the rheumy can prescribe a steriod containing dental paste that you put on (at night is best ...it is pretty yukky) and it short circuits the formation of mouth ulcers ...at least it does for me.
Hashimotos, Primary SJS, Celiac
Synthroid, Plaquenil, Crestor, Evoxac, Meloxicam (if needed), Prednizone (if needed),Vit D, Fish Oil, Restasis

Prairie Gal

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Re: Why does my mouth hurt? Can someone explain?
« Reply #10 on: September 18, 2010, 09:07:04 PM »
Deb, my tongue used to stick to the roof of my mouth at night because my mouth was so dry.  After 4+ months on Plaquenil, I produced a lot more saliva and it quit happening.

I note you've started using Plaquenil.  It takes a while to kick in, but I hope it works to help your dry mouth as it did mine.  I take 200 mg in the morning and 200 mg at night.  My rheumy has cut me back to 200 or 300 mg a few times, but a total of 400 mg/day works for me.

I still wake some nights with a mildly dry mouth.  When that happens, I have a sip of water and use a bit of Oral Balance gel.  I also noticed on the Mayo link that a couple of suggested treatments for burning mouth are Alpha-Lipoic acid and B vitamins.  I take both of them now.
72 y/o F; SjS; Raynaud's; Lichen Sclerosus; Prilosec; Flexeril; Clobetasol; Lisinopril. ToCo-Q 10; MegaEFA; Black Currant seed oil; 5-HTP; SAM-e; Slo-Mg; Vit D3; Calcium; Aleve; 81 mg aspirin; multi-vitamin/mineral; Vit. B1,3, 6 & 12.

eyeamdry

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Re: Why does my mouth hurt? Can someone explain?
« Reply #11 on: September 18, 2010, 09:13:13 PM »
One of my non-eye first symptoms was numb lips.  That was some time before my diagnosis.  I also had numb knees-big difference I know.  But, I do know those were my non-eye signals with me.  

In the posts above people are complaining about their mouth and/or lips.  Mine, first, is numb lips.  This is where a person would apply lipstick to.  Then I started to get some numbness around my mouth around the chin and cheeks.  It comes and goes.  Then the dryness set in for the mouth. Wham-bang.  All at once.  Of course, there is lots of medications I take which may contribute to it, but Sjogrens is the main reason.

I take Lyrica and it does help with the numb lips.  It doesn't last all that long and I take it 3x day, but as of now I consider it one of my expensive "needs."  Also need Evoxac because mouth is desert dry.  Sometimes I can't even talk because I can't move my mouth it's all stuck together.  This is also a very expensive med, but for me a necessary one.  I also don't like it because it makes me sweat especially at night.  

There's my explanation of my "numb lips", etc.  Oh something new I've noticed must be neuropathy inside the mouth.  It feels like I have hair in my mouth all the time.  I don't of course, but I'm always trying to get it ut. Oh my. lol. Lucy

irish

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Re: Why does my mouth hurt? Can someone explain?
« Reply #12 on: September 18, 2010, 11:15:31 PM »
Deb, I know what you are talking about. I went through this for years and for some reason it stopped and I am just treading quietly cause I expect it will return again.

I am also of the opinion (gleaned from research) that it is from neuropathy and dryness. I know that it can be so miserable and then when the lips get sores and swollen that adds fuel to the fire.

The thing I am really interested in is your pain under your bra straps. I had that for years and years and it hurt so bad. Probably cause we have to wear a bra to work. I would place my hubby's white handkerchiefs under my bra strap to help avoid pressure. It helped a little.

Anyway, I ended up having such severe pain in my back and down my arms and into my fingers that I could have screamed. It was like having a fire lit in these areas. It also seemed like the fire came out between my fingers and that was really something. I figured it was from my back and I just worked and worked on getting repositioned in bed to prevent any more of sleep interruption.

Well, I had carpal tunnel and had the surgery in the right wrist and guess what.That pain in my right upper back, neck, shoulder, down arm and wrist into my fingers went away. I was amazed as I did not know that carpal tunnel acted this way. I have the carpal tunnel in my lieft wrist but am controlling it by wearing a brace to bed. I have found that sleeping without a brace is one way to kick up the carpal tunnel real fast.

I am pretty sure that my Mom had sjogrens undiagnosed and she suffered with the bra strap thing for years. Man, would she be surprised to find out what can cause it. The tendons are affected big time in any part of the body with sjogrens. Hope this info helps. Irish.  ;D

eyeamdry

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Re: Why does my mouth hurt? Can someone explain?
« Reply #13 on: September 18, 2010, 11:45:06 PM »
Irish I am also a big proponent of wrist braces at night for carpal tunnel.  I have one carpal surgery and it helped at the time but after SJS not much.  I am not getting the other wrist done.  For years before surgery, and since now, I've worn my ugly black velcro wrist braces to bed.  It really does help with the carpal tunnel and/or tingling in fingers and hands.

Nice thing is if you wear them at night no one is asking what's wrong. 

season

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Re: Why does my mouth hurt? Can someone explain?
« Reply #14 on: September 18, 2010, 11:54:21 PM »
So sorry. I understand, I too have a sore mouth quite often. I swish my mouth throughout the day with warm salt water.