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Can we take a poll on mouth sores please?
9 Replies
iliveinpain - September 11

I was wondering how many of us here have problems with our mouths as far as inflammation, red sores, etc., in our mouths and on our tongues. I had a diagnosis of Oral Lichen Planus 3 years ago, after having a biopsy done at my oral surgeons office. After all this time, it's acting up again, and I have another appointment tomorrow morning with my oral surgeon again. I am NOT looking forward to it. I've noticed a lot of people here have complained of similar issues and in my opinion this is more than likely a "perk" of FMS. I mentioned this to my doctor, and he doesn't agree with me. However, we know that a lot of doctors are still pretty much in the dark and clueless as far as fibromyalgia goes anyway. All of us here know WAY more than the medical community, in my opinion. After all, we live every day with this! So, oral lichen planus, mouth and tongue sores anyone????


January - September 12

I don't know about serious tongue sores… but when I got very ill and my immune system was low, one of my symptoms was sore red cracks at the side of my mouth. All I had to do was yawn, and the skin at the sides of my mouth would split open, then get infected. This is called angular cheilitis, and it can range from mild to severe, and can progress to bacterial or fungal infections. *I* finally diagnosed the root cause of my problem as gluten sensitivity/celiac disease - my illness triggered the more severe form of this disease (celiac) in me - just like fibro gets triggered! Going gluten free healed it completely, but if I accidentally get some gluten, this problem crops up again. In my reading, I found out that this is one of the diagnostic indicators of celiac disease (shouldn't a doctor or dentist know this????) Also included in celiac disease problems are things like aphthous ulcers in the mouth. I've had bouts with those at various times in my life. From what I've read, they are often triggered by food allergies. If you're interested, you can search "celiac" in the blue search box at the right, or google it for more information. The Celiac Sprue Association has good information.

I don't know if this is your problem - you could be allergic to gluten or to something else.. Or it could be the lichen planus. Another thing that is related to mouth sores (of certain types) is a vitamin deficiency of some kind. Sometimes you need extra vitamin B complex and C, especially if you have disease like celiac or some other kind of malabsorption issue. The B and C vitamins are water soluble, and easily wash out of your body. Probably wouldn't hurt to take a little supplementation of those, as they are good for oral health in general, but of course, check with your doctor before taking extra.

Sorry you are hurting and I hope you get some answers soon!


fibromite.u.k. - September 13

I have suffered for years with sore lips and ulcers in my mouth. For the sore lips I always have to use lipsil at night, but lately it has got worse and I get cracks at the side of my mouth as well. I now have to buy some special high intensity ointment to put on my lips. With the ulcers I get them on my tongue and on the inside of my mouth and now on the roof of my mouth. They can be very painful. This year they have got much worse and I have been having to go to the hospital about them. They are trying lots of things to help me. The latest is for me to wear a mouth guard at night in case I am biting my tongue, but personally, I don't think this will help as I get them on the roof of my mouth and I can't be biting that! My rheumy and the doctor I have seen for the ulcers are both thinking now that I may have an illness called Behcets and are doing more tests and things to try to find out for sure. I know of at least three other people with fibro who get ulcers in their mouths as well.


Fantod - September 14

My best friend has Lichen Planus along with Fibromyalgia (FMS) and Sjogren's. Her problem with Lichen Planus is particularly severe. She has open sores on all of her limbs and in her mouth. She has frequent flares but any exposure to gluten makes it much worse.

If I were you, I would be tested for gluten sensitivity. A stool test is more accurate than a biopsy or blood test. Either of the latter may not reveal a problem. Doctors seem to be completely uninformed about Lichen Planus. You may also want to consider seeing a nutritionist that is knowledgable about supplements to treat it. Take care and good luck.


mypain - September 15

None here...


ljkentucky - February 22

Check your toothpaste. I had this problem off and on my whole life. Finally a doctor told me that a lot of people have a reaction to a common ingredient in toothpaste called sodium lauryl sulfate. I started reading the ingredients and noticed that it is high on the list on Crest products (which I grew up on). Changed to toothpastes that have the least amount of that and haven't had a problem since. Arm & Hammer product seems to be the best I've found.


Jocelyn - February 23

I have had mouth sores for a long time. One time they were even down my throat. After all my suffering a doctor gave me a paste to put on them and the sores go away real fast. I've had them on my tongue next to my molars, near my front teeth and down my throat. I will get you the name of the dental paste. I do agree that some toothpaste bring it out. So, be careful with your toothpaste. But I get them anyway. I will write back when I am at home with the name, it is a prescription. One doctor wanted to do a biopsy,but my new doctor has never asked. I'd rather just dab on the paste and call it a day!


kvc33 - February 23

I used to get them occasionally but since I've avoided the foods that I tested allergic to I rarely get them now. When I have a sore throat I cough up white bits which look and smell like pus. I used to use a special mouthwash called Sterisol which is good for mouth sores. Tom's natural toothpaste is a good choice for anyone who wants to avoid toxic ingredients.


Jocelyn - February 23

Okay the name of the prescription for mouth sores is. IC TRIAMCINOLONE 0.1% Paste.

Drug Maker is: TARO

And it is considered a dental paste.

Good Luck! It works real well on me!


Jocelyn - February 24

Hi kvc33

I just want you to know that the white bits that you cough up that smell bad are tonsil stones. Both my kids get them. You can google them and I can bet that when you read about them, they are exactly what you have. They form in the tonsil ducts and they can grow and then they can be popped out or sometimes come out on their own. My kids have gotten past the gag reflexes and they popped them out. By getting them out it stops bad breath and the throat from being sore. The sites to suggest a couple of way to help stop producing them, besides having your tonsils out.

Let me know what you think.



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