Need help with Burning Mouth Syndrome.

[SookieBordeaux]

I was wondering why my dry mouth was causing me so much discomfort and angst as my confirmation of having Sjogren's continues.  The tip of my tongue burns all the time and my gums are always so sore and raw as well as the roof of my mouth.  Yes my mouth is dry but the burning is driving me up a wall!  It's quite painful.  I am so new to all these symptoms since it has been about 8 months since all this started and they are rapidly increasing on all fronts.   I do have the Neuropathy confirmed. 

I then discovered the Burning Mouth Syndrome and then had that Aha! moment.  Not just dry mouth but burning sensation and nerves involved.  No wonder!  I was doing everything wrong.!  Doctor said to chew gum so I was chewing spearmint gum.  Wrong thing to do.  Also no citrus or tomatoes or cinnamon which I was putting on my oatmeal every day.  Sheesh!  I am beginning to wonder if there is anything I can eat anymore.    Due to other issues I have no dairy products, sugar, gluten is supposed to be bad, I keep losing weight and am now down to 115 pounds.  I'm actually at the point where food does not taste right anymore either.  Sugar is like hurting my teeth and never did before and tastes insanely sweet.  Spices are off the chart too and if on food that is all I taste.  Is that from the Neuropathy?   I had the nerve study done and was diagnosed with it but no one has told me anything about it yet. 

If anyone has any input on diet for Burning Mouth or ideas please let me know or what else I can eat.  I'm grasping at straws these days.. I have been using coconut oil to put on my tongue and it seems to help a little as well as oragel and Biotene Spray. 

If it wasn't for this board and reading I think I would have honestly lost my mind by now!  Thanks for any and all help!  You guys are great! 

SookieB

[Ark mom]

Ouch!  I'm so sorry you are in pain.  That sounds awful!  I have had burning mouth off and on over the years, but nothing to your extent.  I know how much it hurts though.  I chew gum almost all day to help with saliva, but I chew Extra, bubble gum flavor.  It stimulates salivary flow, but it is not minty, which would irritate my mouth. 

Some people with burning mouth syndrome take medications like gabapentin or Cymbalta to help with pain.  I hope you find something that works.  Hugs.

[SjoGirl]

Been there and had a recent relaspe after thinking I could treat my mouth more like a normal person would (used too harsh a toothpaste). Regarding your mouth:

1. Talk with your dentist about Flouridex toothpaste which is a perscription paste for people with dry mouth. It cleans, but is gentle. My dentist charges about $16 a tube. You don't use very much so it lasts a long time.

2. You may already be, but if not be sure to sip water throughout the day. When this first started I gulped a lot and dried myself out even more.

3. PH of your mouth changes with the dryness. That is one reason why you have difficulty eating certain foods.

4. You may already be due to burning, avoid spicy foods. For a while I couldn't even eat a bit of pepper. Now I can, but I don't eat spices because they dry my mouth out more.

The dryness also be why you can't tolerate certain foods like citrus, etc. I too lost a lot of weight at first, with hormonal changes and limited diet. I still struggle with diet and have to take a proton pump inhiitor due to gastritis.

I mourned the changes in my diet for a long time, sometimes I still do and I'm still experimenting with food (which I've been doing for two years). This is hard, but I hope for you that there is hope.

[Tivia]

My mouth feels like hot and sore mainly the sides and end of my tongue but sometimes my gums. I get like patches missing on my tongue too that come and go. I know my saliva output is dwindling and thats probably part of the issue, but what is burning mouth. I really didnt expect my glands to die off without some kind of swelling or something, and not so soon. I was hoping I had 10 years before I got the real dryness.

[SookieBordeaux]

Ark Mom, thanks so much for your reply!  I have some Gabapentin but don't really like the side effects it causes me.  I might lower dosage again and see if it helps some.  Anything is worth a try at this point.  I'll ask my Rheumy about Cymbalta.

I was just looking at all the things I have for dry mouth and I have to re think everything I have done so far.  The Biotene spray has mint in it and so does the tooth paste as well as the mouth wash I have.  I feel like I am in a "Perils of Pauline" movie and on the tracks right now waiting to be rescued.. lol  It's funny and it's not!!!!!!  I figure I can use the coconut oil and I use the Vitamin E gel caps and bite them to put on my tongue for some relief.  I do rinse with baking soda water per my dentist.  Perhaps using baking soda for brushing my teeth now too? 

Is there an old fashioned Medicine Doctor in the house? lol

SookieB 

[SookieBordeaux]

My mouth feels like hot and sore mainly the sides and end of my tongue but sometimes my gums. I get like patches missing on my tongue too that come and go. I know my saliva output is dwindling and thats probably part of the issue, but what is burning mouth. I really didnt expect my glands to die off without some kind of swelling or something, and not so soon. I was hoping I had 10 years before I got the real dryness.

Tivia, Here is the definition from the Mayo Clinic. 

Burning mouth syndrome is the medical term for ongoing (chronic) or recurrent burning in the mouth without an obvious cause. The discomfort may affect your tongue, gums, lips, inside of your cheeks, roof of your mouth or widespread areas of your whole mouth. Burning mouth syndrome appears suddenly and can be severe, as if you scalded your mouth.

Unfortunately, the cause of burning mouth syndrome often can't be determined. Although that makes treatment more difficult, don't despair. By working closely with your health care team, you can often get burning mouth syndrome under better control.

Other names for burning mouth syndrome include scalded mouth syndrome, burning tongue syndrome, burning lips syndrome, stomatodynia and glossodynia.

I hope that this helps you.  I have dry mouth and the burning sensation.  I just put it all together today and finally figured it out by research on the internet.  By eliminating certain things from my diet I hope it will help tremendously.  It says not to eat mint, cinnamon, citrus or spices or tomatoes. 

It sounds like you just might have it too to an extent from my reading about it as it can come in patches.  Try what I am doing by the elimination process. 

SookieB

[Tivia]

It sounds like you just might have it too to an extent from my reading about it as it can come in patches.  Try what I am doing by the elimination process. 

I will try , is your mouth really dry also? Maybe like Sjo said the drier it is the more it can feel like burning, darn evoxac isnt doing much anymore. 

[SookieBordeaux]

Been there and had a recent relaspe after thinking I could treat my mouth more like a normal person would (used too harsh a toothpaste). Regarding your mouth:

1. Talk with your dentist about Flouridex toothpaste which is a perscription paste for people with dry mouth. It cleans, but is gentle. My dentist charges about $16 a tube. You don't use very much so it lasts a long time.

2. You may already be, but if not be sure to sip water throughout the day. When this first started I gulped a lot and dried myself out even more.

3. PH of your mouth changes with the dryness. That is one reason why you have difficulty eating certain foods.

4. You may already be due to burning, avoid spicy foods. For a while I couldn't even eat a bit of pepper. Now I can, but I don't eat spices because they dry my mouth out more.

The dryness also be why you can't tolerate certain foods like citrus, etc. I too lost a lot of weight at first, with hormonal changes and limited diet. I still struggle with diet and have to take a proton pump inhiitor due to gastritis.

I mourned the changes in my diet for a long time, sometimes I still do and I'm still experimenting with food (which I've been doing for two years). This is hard, but I hope for you that there is hope.

SjoGirl, I will check with my dentist about that toothpaste.  It does sound expensive but worth it if it helps.  Is it mint flavored?   

What is a proton pump?  That does not sound like much fun at all.   

Citrus and spices are definitely out for me right now.  I think I'll start shopping in the baby food section.  What could be more milder than that right?  It's cheap too.  A ;)t least for now it's a solution.  As for the water I used to drink a lot but I have slowed down a lot on that and just sip now.

It's weird how a year ago I wanted to lose weight and now I'm worried about losing too much.  Life does throw many curve balls. 

Thanks for all your advice!

SookieB

[SookieBordeaux]

It sounds like you just might have it too to an extent from my reading about it as it can come in patches.  Try what I am doing by the elimination process. 

I will try , is your mouth really dry also? Maybe like Sjo said the drier it is the more it can feel like burning, darn evoxac isnt doing much anymore.

Yes, my mouth is dry but the burning is very pronounced and exactly how it is described by Mayo.  Plus I have the Neuropathy issue and nerve problems so I think that is a factor involved in this.  I am hoping that the elimination process helps some.  I'll let you know ok?

SookieB

[SookieBordeaux]

Tivia,  Here is some more information that might be helpful for you on this and others as well. 

Signs and Symptoms   (Burning Mouth Syndrome)

Moderate to severe burning in the mouth is the main symptom of BMS and can persist for months or years. For many people, the burning sensation begins in late morning, builds to a peak by evening, and often subsides at night. Some feel constant pain; for others, pain comes and goes. Anxiety and depression are common in people with burning mouth syndrome and may result from their chronic pain.

Other symptoms of BMS include:
tingling or numbness on the tip of the tongue or in the mouth
bitter or metallic changes in taste
dry or sore mouth.

Causes

There are a number of possible causes of burning mouth syndrome, including:
damage to nerves that control pain and taste
hormonal changes
dry mouth, which can be caused by many medicines and disorders such as Sj?gren?s syndrome or diabetes
nutritional deficiencies
oral candidiasis, a fungal infection in the mouth
acid reflux
poorly-fitting dentures or allergies to denture materials
anxiety and depression.
In some people, burning mouth syndrome may have more than one cause. But for many, the exact cause of their symptoms cannot be found.

Diagnosis

A review of your medical history, a thorough oral examination, and a general medical examination may help identify the source of your burning mouth. Tests may include:
blood work to look for infection, nutritional deficiencies, and disorders associated with BMS such as diabetes or thyroid problems
oral swab to check for oral candidiasis
allergy testing for denture materials, certain foods, or other substances that may be causing your symptoms.

Treatment

Treatment should be tailored to your individual needs. Depending on the cause of your BMS symptoms, possible treatments may include:
adjusting or replacing irritating dentures
treating existing disorders such as diabetes, Sj?gren?s syndrome, or a thyroid problem to improve burning mouth symptoms
recommending supplements for nutritional deficiencies
switching medicine, where possible, if a drug you are taking is causing your burning mouth
prescribing medications to
relieve dry mouth
treat oral candidiasis
help control pain from nerve damage
relieve anxiety and depression.
When no underlying cause can be found, treatment is aimed at the symptoms to try to reduce the pain associated with burning mouth syndrome.

Helpful Tips

You can also try these self-care tips to help ease the pain of burning mouth syndrome.
Sip water frequently.
Suck on ice chips.
Avoid irritating substances like hot, spicy foods; mouthwashes that contain alcohol; and products high in acid, like citrus fruits and juices.
Chew sugarless gum.
Brush your teeth/dentures with baking soda and water.
Avoid alcohol and tobacco products.

Talk with your dentist and doctor about other possible steps you can take to minimize the problems associated with burning mouth syndrome.
This information is not copyrighted. Print and make as many photocopies as you need.

SookieB

[susanep]

I always had it very bad too. It is better with the gabapentin I take, and the pilocarpine, but I still have flare up worse at times.

susanep

[sjenny]

B12 can help alleviate burning mouth.  Try to find sublingual tablets you can suck on - they are absorbed better.

Also, I remember a fellow Sjoggie who used to find some relief sucking on popsicles.

[SookieBordeaux]

I always had it very bad too. It is better with the gabapentin I take, and the pilocarpine, but I still have flare up worse at times.

susanep

Hi Susan, I'm so sorry that you suffer with this too.  It is awful to deal with.  I have not heard of pilocarpine.  I'll have to look that one up.

Appreciate your advice! 

SookieB

[SookieBordeaux]

B12 can help alleviate burning mouth.  Try to find sublingual tablets you can suck on - they are absorbed better.

Also, I remember a fellow Sjoggie who used to find some relief sucking on popsicles.

SJenny, I do take B12 but not the ones you suck on.  I will try to find those.  I have gone through so many Popsicles that my tongue is permanently discolored from them.. lol  red, blue, orange.. haha  They do help.  I also make slushies a lot and smoothies but now have to be careful with fruit because of the acid. 

This whole thing started out getting Fibromyalgia and as the years go on it's like a snowball rolling downhill and it gathers speed picking up every autoimmune disease on it's way downhill.  Maybe if I spray some WD40 on me they won't stick to me!    

SookieB  Learning to cope with this newfangled thing

[A66eyroad]

I use Evoxac to help with the dry mouth, and it seems to help my burning mouth syndrome stuff, too!