OLP and LP on my shins, both legs, top of both feet, eyes, throat, esphogus

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Im about to crawl out of my own skin...the sever pain from this flare up is beyond a 15 in Pain numbers, I started drooling on wed, by Thursday night my lips, tongue were swollen and buzzing all the tissue inside my mouth was inflamed with white  lace marks along with open sores on inside of my cheeks and along sides of  of tongue and really all over, can't hardly talk it hurts so incredible bad.  I went to bed thursday night after trying a pudding which my mouth hurt so bad I couldn't geit down, so all day friday and sat Ive had sips of water, I have been in bed for over 2 days, sleeping taking beadryl, lorzapan,. diludid and advil, also applying protopic  to the inside of my mouth 4 times a day. all I could do and only wated to do is sleep the pain away.  My sister came over later tonight and took me two to ER Hospitals, we sat for hours at the firs then went to anther and got right it, the gave me a shot of steriod and 4 20mg pills for the next f couple of days.  also prescribed some lanicane swish and spit, which only numbs it for a few minutes.

The doc that saw me kept saying you know we cant do anything, there is no cure, you will just have to learn to live with it.  Terrible bed side manner.

Any How I would appreciate any of the suggestions you all might have, I have seen post with idea of cocanut oil, msd or silica.  I hate using the protopic as it could speed up the process of cancer.   I need help peeps, even drinking water burns and is hard to get down, I choke up my pills all the time.

Helpless in Poplar Grove, IL  

Thank you , Teresa

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  • Posted

    I had exact same pain 6 wks ago even water Stang I beg you to go to a homeopath mine gave me merc200 which take for 2/3 days and I swear mouth completely healed I am not lying I refuse to take steroids coz they don't help me at all homeopath is so much kinder ! Also I have silica and staph coz I have angular cheilitis too x

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  • Posted

    Hi Teresa,

      We seem to have a lot in common; my name is Terri, formerly from Belvidere and worked at Swedes as a nurse for many years before relocating. And I had many symptoms similar to yours with OLP and LP of my entire trunk.

       My first suggestion is to try soft cold foods (like ice cream). The pain will be bad at first, but then the cold numbs your mouth and throat. Be sure not to buy any flavors with add-ins (like chips or nuts). Plain vanilla worked best for me. When my mouth healed a bit, soft room-temperature foods (like mashed potatoes) were pretty well tolerated.

       You might want to try a supplement drink, like Ensure, to help give you nutrition. Your body needs energy to fight the LP. It's super important to keep forcing yourself to drink water/fluids; dehydration can cause kidney failure among other things.

      After failure with steroids and multiple topicals, my dermatologist most recently suggested UV light therapy. Yup, actually told by a derm to use a tanning bed! It's been 2 weeks now and it's working!! For the first time in 1 1/2 years, my skin is looking better, much better. I started w/ 4 minutes 3x per week for the first week, now 5 min x3 per week. And with this awful cold weather, I love those few minutes of being warm!

       Also added a daily Turmeric capsule to my diet; can't say if this has helped or not as the addition coincided with the UV light therapy.

       I hope that some of these things will bring you some relief. You will be in my prayers.

            Terri

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    • Posted

      Hi stellarose369  Yes I agree with the sunlight theory. I have Olp and Lp on ankles, back, neck, arms & hands. In the 7 good weather months I make sure I get 15-30 min. a day of direct sunlight on my skin with just coconut oil. This keeps my Lp on skin quite calm. My mouth is another story can’t get anything to calm it down😫

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  • Posted

    I had lichen planus on both lower  legs, one foot, genitals and orally as well, but I have been concentrating on healing my gut and it is working.  For the first time in 7 years I am pain free and I don’t have any itching. I take a good multivitamin (an A-Z one including vitamins D, C and zinc), a good probiotic, 6x AHCC gold and 1 purslane tablet daily. I also have a 2 cup Epsom salt bath every night (30mins) to avoid constipation, and I have cut out greasy food, alcohol and most sugars. I also have Accupuncture once a week. It has only been 7 weeks but the improvement has been huge. 

    I had a lot of antibiotics as a child and in recent years (10 lots in 13 months!) and I believe that they kill your good bacteria which leads to a host of issues (like lichen planus).  My Accupuncturist told me that my olp on the lower gums reflects an issue in the large intestine.

    Avoid constipation (Epsom baths will help that). Reduce the inflammation and treat the gut.

    Good luck. 

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  • Posted

    I am in so much pain tonight with My OLP there is so much salyvia building up in my mouth I am havin to spit it out. Also have red patches inside my mouth it's so sore definitely the worst I have had x

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    • Posted

      The saliva was a new thing, yes I drool a few days before the onset, but i took a pain pill and relax pills went to sleep and had thick mucus with dark blood in it, hosp started me on a shot of steroid then 4 pills for next for days, i have 2 left....water is my enemy and I need that to stay hydrated, Ive only been able to tolerate milk through a straw.  seems to coat, had a couple spoons of cold pudding but burnt so bad.  water, why should water burn....this disease really sucks.

       

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