1. < Autoimmune Diseases

Oral lichen Planus: What home remedies or medications help you?

Posted by lovebug61 @lovebug61, Apr 4, 2019

Anyone in the group suffer from Oral Lichen Planus. I am at my wits end with all these erosive sores in my mouth. I've had two biopsies , one in the inside cheek and one under the side of my tongue. The spot under the tongue is extremely sore to touch and has been for over a year. It scares me because the soreness never goes away, sometimes it isn't as sore but nothing helps. Any home remedies for this dreadful condition?

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 15, 2023
In reply to @maddiemae "You are so right that a lot of docs don't know about dysautonomia or central pain..." + (show)
@maddiemae

You are so right that a lot of docs don't know about dysautonomia or central pain syndrome. After 7 specialists and several visits with my pcp I found great neurologists who determined both of these issues. Even with meds ( no cure for cps) and anti-inflammatory diet I still have chronic problems.
Wishes for relief.

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@maddiemae I’m going to ask @rwinney if she can help you with information about central pain syndrome.
Are you currently getting treatment for the dysautonomia and CPS?

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2 replies
leannestork | @leannestork | Oct 16, 2023
In reply to @becsbuddy "@leannestork Hello, Leanne. How long has your mother had this feeling on her tongue? And has..." + (show)
@becsbuddy

@leannestork Hello, Leanne. How long has your mother had this feeling on her tongue? And has she seen her doctor about this? Several more questions: Is she on antibiotics? Has she accidentally bitten her tongue? Are there any white spots on the tongue?
Truly, your mother’s doctor is the best one to evaluate the sore. Will you call for an appointment tomorrow?

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Hi there.... sorry no sore's just burning sensation. she has had it off and on for years. No antibiotics... not bitten her tongue .. or spots. Dr. already knows about it but nothing seems to be working so just thought someone on here might have some ideas

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1 reply
mctd43years | @mctd43years | Oct 17, 2023
In reply to @leannestork "Hi there.... sorry no sore's just burning sensation. she has had it off and on for..." + (show)
@leannestork

Hi there.... sorry no sore's just burning sensation. she has had it off and on for years. No antibiotics... not bitten her tongue .. or spots. Dr. already knows about it but nothing seems to be working so just thought someone on here might have some ideas

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Hi, sorry about your mom. Have you ever thought of a bite plate. She may be clenching her jaw and pushing her tongue into her teeth. That is what I was doing and an orthodontist recommended a bite plate. It works great for me. I wear it whenever I sleep, even a nap. Good luck and keep smiling.

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1 reply
leannestork | @leannestork | Oct 17, 2023
In reply to @mctd43years "Hi, sorry about your mom. Have you ever thought of a bite plate. She may be..." + (show)
@mctd43years

Hi, sorry about your mom. Have you ever thought of a bite plate. She may be clenching her jaw and pushing her tongue into her teeth. That is what I was doing and an orthodontist recommended a bite plate. It works great for me. I wear it whenever I sleep, even a nap. Good luck and keep smiling.

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Thankyou .... is this for a burning tongue

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1 reply
leannestork | @leannestork | Oct 17, 2023
In reply to @becsbuddy "@maddiemae I’m going to ask @rwinney if she can help you with information about central pain..." + (show)
@becsbuddy

@maddiemae I’m going to ask @rwinney if she can help you with information about central pain syndrome.
Are you currently getting treatment for the dysautonomia and CPS?

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I have no idea what any of that is sorry

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mctd43years | @mctd43years | Oct 17, 2023
In reply to @leannestork "Thankyou .... is this for a burning tongue" + (show)
@leannestork

Thankyou .... is this for a burning tongue

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Yes it is. My tongue was burning because of the pressure I was putting on it while I slept. Kind of like when you hand falls asleep when you lean on it too long. Hope this helps.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 17, 2023
In reply to @becsbuddy "@maddiemae I’m going to ask @rwinney if she can help you with information about central pain..." + (show)
@becsbuddy

@maddiemae I’m going to ask @rwinney if she can help you with information about central pain syndrome.
Are you currently getting treatment for the dysautonomia and CPS?

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Hi there @maddiemae, I'm Rachel, it's nice to meet you. Thank you Becky @becsbuddy for inviting me to the conversation. Maddiemae, how long have you been diagnosed with central pain syndrome aka central sensitization syndrome?

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1 reply
maddiemae | @maddiemae | Oct 18, 2023
In reply to @rwinney "Hi there @maddiemae, I'm Rachel, it's nice to meet you. Thank you Becky @becsbuddy for inviting..." + (show)
@rwinney

Hi there @maddiemae, I'm Rachel, it's nice to meet you. Thank you Becky @becsbuddy for inviting me to the conversation. Maddiemae, how long have you been diagnosed with central pain syndrome aka central sensitization syndrome?

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Hi Rachel. It's very nice to meet you, too.

I've had CPS for 4 years.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 21, 2023
In reply to @maddiemae "Hi Rachel. It's very nice to meet you, too. I've had CPS for 4 years." + (show)
@maddiemae

Hi Rachel. It's very nice to meet you, too.

I've had CPS for 4 years.

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Hi Maddiemae - In attempt to not vear from the initial topic of this conversation, please allow me to direct you to the following discussion on central sensitization. I hope you find it helpful and can connect with other members also living with CSS.

Central Sensitization - Please share your stories:
~ https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

And with the holidays fast approaching, this one may be worth a look:

Holiday Sensory Overload - how do you manage?
~ https://connect.mayoclinic.org/discussion/holiday-sensory-overload-how-do-you-manage?

Lastly, perhaps you may find some tips and tools to help with pain management here:

Moderation and Modification - how can it help your chronic pain?
~ https://connect.mayoclinic.org/discussion/moderation-and-modification-how-can-you-benefit/

I'm sorry you've been struggling with chronic pain for 4 years. It takes a lot of courage and perseverance. Please feel free to reach out to me if you have any questions about pain-management strategies or just need a pick me up. You are certainly not alone. Wishing you hope and joyful moments of distraction.

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yellowfin | @yellowfin | Oct 26, 2023
In reply to @artist01 "@rashida I'm new to this group, and very grateful to have discovered a place where we..." + (show)
@artist01

@rashida I'm new to this group, and very grateful to have discovered a place where we can have discussions about lichen planus. I was recently diagnosed, after experiencing very painful mouth lesions since mid-December. I've been prescribed Oracort dental paste (Triamcinolone Acetonide) by two doctors, and used salt rinses extensively, all to no avail. My dentist suggested L-Lysine supplement, which didn't work. Finally saw an ENT specialist in late February, who diagnosed oral lichen planus and prescribed Clobetasol Ointment (anti-inflammatory topical steroid), which is helping a bit. I also apply pure CBD Oil to the lesions twice a day, which alleviates the pain for a while. I've researched extensively and am now taking Curcumin Ultra 237 mg once a day, as well as trying sesame oil and coconut oil rinses daily. I only use a baking soda toothpaste (no SLS) and a natural type mouthwash (no SLS, alcohol, fragrance, etc.). If I sound somewhat desperate, it's because I AM! I feel that the CBD Oil and Curcumin capsules are the most helpful so far, but eruptions are so painful and ongoing. I have GCA and wonder if anyone else has that? I found a medical article online outlining a case of both these autoimmune diseases. I can post that later, if you wish. Would love to hear from others with this awful condition.

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what type of CBD Oil do you use? Specific Brand that helps with oral lichen planus

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