Fibromyalgia Action UK
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I have very bad mouth pain with my FMS all the time the nerves are buzzing burning bad taste does any one else have this? i have had Fibro for 20 years and for two years i have managed to not be on any meds but for the last month things have gone mad in my body a really bad flare up and i don't know why my blood pressure is high and sleep is not good maybe if i am lucky i get 4 hours i went to the doctors who put me on blood pressure tabs and sleeping pills really feel bad again will this thing ever go away?

9 Replies

It could be Oral Lichen Planus. The symptoms of oral lichen planus may include a burning or stinging discomfort in the mouth when eating or drinking. Mild cases may be symptom-free. Spicy foods, citrus fruits and alcohol can be particularly troublesome. If your gums are affected, they may become tender and tooth-brushing can be uncomfortable. Ulcers (often called erosions) may occur and these are especially painful.

If you have this then eating anything acidic will make it worse. Tomatoes are a trigger.There will be lesions and ulcers in your,mouth and if left untreated, and not looked after, can develop into Erosive Oral Lichen Planus and then, rarely, mouth cancer.

Some people have a mild form of it and can ignore it but I certainly couldn't. My mouth felt like it was on fire and I couldn't eat without much difficulty and could only drink through a straw.

No one GP would take me seriously and told me and was prescribed Bonjella teething gel which was a joke. I had to fight to see a specialist.

I had a biopsy done at the oral clinic at Guys Hospital and was finally diagnosed. It's always a relief when one gets a diagnosis.

INSIST for a referral to a specialist if it is causing you distress (like it did me).


Thanks for your reply i will look into Oral Lichen Planusi have a lot is the same but not all i never get Ulcers and chilli is the only thing that gives me same help its like a pain killer, i can eat and when i do its goes away but as soon as i stop it floods back i chew a lot of gum as that helps too and mints, its a very odd thing i have seen lots of doctors who say its part of my FMS and i had a CAT SCAN which said i do not have any frontal sinuses but nothing else, i have had this for 7 years but it has just got worst.What treatment did you have for your Lichen Planus ?


Looked at Lichen Planus and its not like that i have never had sores or ulcers just bad pressure ,stringing ,soreness hotness, bad taste throbbing, its drives me mad.


It's always best to be referred to an oral clinic. If I were you, I would push for a referral and you may get a diagnosis of whatever it is. You have nothing to lose. I went to Guy's and they were brilliant. x


Hi, I have been getting pain in my mouth, its as if my teeth are loose and vibrating kind of, it feels like i need to push on my teeth hard to stop this sensation!!! is yours anything like this?? xxx


That's what mine must be then! About a month ago I went to my GP because my mouth was on fire and my tongue felt big,I had split corners of my mouth and my mouth was very dry.She put me on thrush medication but I couldn't stand it because of the pain.It did die down after a couple of weeks ago but has got worse again.


Yes, Amanda, that certainly does sound like it. My symptoms were the same and my tongue had a white coating on it which was NOT thrush but Oral Lichen Planus!! I would pursue a referral to an oral clinic for a diagnosis and treatment. x


yes silky ,i get mouth pain my tongue is painful my mouth is burning,spicy foods do aggrivate it ,my tongue feels swollen and my teeth keep catching it,a ,fed up alot of things i suffer i just put up with it,get fed up with jacksiex


Jacksie, it sounds like you too have it but you MUST get a formal diagnosis and they may want to do a cheek biopsy to confirm. It drove me insane and couldn't believe how not one doctor took me seriously. If I hadn't been making appointments every three days and harassing the surgery for many weeks (after suffering for years), they would never have sent me to Guy's oral clinic.

I was given 500mcg Betnesol tablets to dissolve in water and use as a mouthwash three times a day until my mouth improved. I was also given a steroid mouth spray (I believe it's used by asthma sufferers) to spray directly on my mouth ulcers. I will need this for the rest of my life!

Btw, my tongue also felt swollen and I kept biting it until it bled. I was in tears and an emotional wreck. I have much to thank the specialists at Guy's Oral Clinic for and have no faith in GPs whatsoever!

Do push for a referral to a specialist oral clinic asap.

Luv Silky x


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