1. < Autoimmune Diseases

Tongue-biting with oral lichen planus

Posted by lcr @lcr, Feb 8, 2022

Does anyone else experience spontaneous, uncontrollable tongue-biting with their oral lichen planus? It happens at random times, usually when I am not doing anything (not talking, eating, etc), often when I am drifting off to sleep or otherwise totally relaxed. It even wakes me from a dead sleep. The pain is excruciating and radiates for several minutes, unlike when I might have bitten my tongue before I had this dreaded disorder. Anyone else dealing with this? If so, how?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

rashida | @rashida | Feb 12, 2022
In reply to @becsbuddy "@lcr Your episodes of tongue biting sound very strange. Have you experienced them for a long..." + (show)
@becsbuddy

@lcr Your episodes of tongue biting sound very strange. Have you experienced them for a long time or actually hurt yourself? What does your doctor say about the tongue biting? I agree with the other members who recommends mouth guards, but only after you have had a good checkup with your doctor.
You also say that you have OLP, oral lichen planus. Is it well controlled? Does your doctor see any connection between the OLP and tongue biting?

Jump to this post

@becsbuddy - yes, I do have OLP too. It had cleared up completely when I was on the full dose of Methotrexate but I had to be weaned off it after about three years because my dermatologist was concerned it might affect my fatty liver disease. As soon as I got off Methotrexate my OLP and psoriasis returned with a vengeance. I have been on biologics the past two or three years but they haven’t been quite as effective as the Methotrexate was. I have just started on a new one - Skyrizi - but I have had only one dose so far. I’ll have to wait about three months to see results - if any.

Between Fibromyalgia, Psoriasis and GERD due to a hiatal hernia (yes, I’m under treatment for all), I’m a mess. 🤷🏼‍♀️ The tongue and cheek biting is just a random thing that happens, but like everyone else who has experienced it before knows, once you bite, you keep doing it involuntarily - subsequent bites often happen when I’m eating. The OLP has made the tongue bite even more painful than it usually is.

REPLY
rashida | @rashida | Feb 12, 2022
In reply to @becsbuddy "@lcr Your episodes of tongue biting sound very strange. Have you experienced them for a long..." + (show)
@becsbuddy

@lcr Your episodes of tongue biting sound very strange. Have you experienced them for a long time or actually hurt yourself? What does your doctor say about the tongue biting? I agree with the other members who recommends mouth guards, but only after you have had a good checkup with your doctor.
You also say that you have OLP, oral lichen planus. Is it well controlled? Does your doctor see any connection between the OLP and tongue biting?

Jump to this post

@becsbuddy - sorry … I just noticed your reply was to @lcr and I jumped in to answer! My apologies, @lcr!

REPLY
lcr | @lcr | Feb 13, 2022
In reply to @becsbuddy "@lcr Your episodes of tongue biting sound very strange. Have you experienced them for a long..." + (show)
@becsbuddy

@lcr Your episodes of tongue biting sound very strange. Have you experienced them for a long time or actually hurt yourself? What does your doctor say about the tongue biting? I agree with the other members who recommends mouth guards, but only after you have had a good checkup with your doctor.
You also say that you have OLP, oral lichen planus. Is it well controlled? Does your doctor see any connection between the OLP and tongue biting?

Jump to this post

My OLP is not controlled. I am starting methotrexate tomorrow, after topical and steroids taken orally didn't help. My general practitioner had me on a muscle relaxant for a couple weeks, but it didn't help much at all. It may just be that my tongue is swollen, but no one seems to know.

REPLY
gargamel666 | @gargamel666 | Jul 1, 2022
In reply to @artist01 "@rashida, @lcr I had the very same experience as you, @rashida, regarding chewing gum! I was..." + (show)
@artist01

@rashida, @lcr I had the very same experience as you, @rashida, regarding chewing gum! I was almost addicted to it at one short period when I used it to alleviate stress. Chewing gum really seemed to help. I finally had to STOP, due to constantly having those awful, and painful, incidents of accidently biting my tongue or inner cheek. It was a very difficult habit to break at the time too, because of ongoing anxiety I was experiencing. I'd been fitted with an expensive oral appliance by my dentist, but I've forsaken it because it's very ill- fitting. No refund of the $500 by the dentist either! I've had other oral appliances over the years that worked quite well though, so @lcr, please don't hesitate to give it a try. I wore it during quiet alone times and at night for relief of TMJ and bruxism. No drooling either! Lol. And if you're alone, who really cares?
Good luck! Laurie

Jump to this post

What are the other things you have used to stop the biting? Mine is 24/7 and I'm losing my mind with the pain. I can't even function or go to work.

REPLY
1 reply
artist01 | @artist01 | Jul 1, 2022
In reply to @gargamel666 "What are the other things you have used to stop the biting? Mine is 24/7 and..." + (show)
@gargamel666

What are the other things you have used to stop the biting? Mine is 24/7 and I'm losing my mind with the pain. I can't even function or go to work.

Jump to this post

@gargamel666 For the past few days, I'm in severe pain - mouth, jaw, ear, neck, face, temporal area of scalp, swollen lymph nodes under jaw - all on the right side. Attended hospital Emergency on June 29th and, with NO tests done, doctor said it's a virus, and just have to ride it out. They did do a Covid swab though, the results of which came back today "No indication of Covid-19" and "Negative for Influenza A and B." "Negative for SVR".
I'll have a further test tomorrow. Maybe too early for that first test.
I feel sooo miserable with the pain, weakness, sore joints, etc.
Last week, I saw a Dermatologist who prescribed Lidodan 2% (Canada), Lidocaine Oral Topical Solution, which, used once, and mixed 50/50 with mild indigestion solution, Diovol Plus (Canada) completely numbs mouth for 3 hours. A bit scarey but may help you.
That was prescribed before this painful onset of symptoms, and prescribed for my OLP.

REPLY
Mary @1950 | @1950 | Jul 2, 2022

I had all these same symptoms. They lasted for a long time. The mouth wash recipe I used was lidocaine, liquid Benadryl and liquid cherry Maalox. I also had trouble swallowing with a lot of choking.

REPLY
shannonbear | @shannonbear | Nov 1, 2022

I also have it. at first I thought is was Bruxism (grinding teeth), but sometimes I do NOT bite my tongue, it just HURTS, sometimes at the back where it attaches and sometimes my whole tongue. It is sudden and acute; it always happens when I am asleep.

REPLY
sspil5 | @sspil5 | Nov 1, 2022

I thought this condition was just me . My tongue has been burning for years now but recently I’ve developed a biting of my tongue. Excruciating. Can be when talking , eating or falls asleep. I’ll try some of these recipes to relieve the pain . Has anyone had a cortisone shot in the tongue? What type of dr? My dentist doesn’t know anything about this . I also have lichen sclerosis of the genitalia. Miserable!!

REPLY
View MoreView Less
Please sign in or register to post a reply.