Lichen Planus Blues
Posted , 6 users are following.
Hello everyone,
I was diagnosed with OLP two weeks ago, after suffering from horrible flare ups for the past 18 years. Every doctor was stumped, and I have missed out on so much in my life because of these painful sores.
I thought that I would feel relief and happiness after finally knowing what this monster was, but I don't feel that. Instead, I feel sadness that I will be battling this for the rest of my life.
No one around me seems to understand the severity of it. Family, friends, and coworkers all treat it as if it is minor, because they don't understand how painful it is, even when I have tried to explain it. Has anyone experienced difficulties with work due to having to miss a lot of time because of the painful sores?
I used to get these sores every 6 months when I was a child, and when I got into my 20's it started coming every time that my menstrual cycle came. Now, it still does that, but they never go away in between. I may be lucky to go 5-7 days tops without any ulcers, and then before you know it, one pops up, and then 5 and then 10, and it spirals out of control before I can even stop it. I eat very clean, no sugars, dairy, gluten, or grains, and am still experiencing flare ups. I also stopped using toothpastes with SLS in them. One thing that I have noticed is that alcohol upsets my condition, but I admit that as a 27 year old, single woman in the DC area, it saddens me to have to give up a refreshing margarita on a Saturday evening while out with my girl friends.
I hate how this condition has affected my life, from experiences, to relationships, to losing jobs, and not going away to a university for college...It's quite discouraging. And there isn't enough research being done to better treatment for this. I feel so alone...and now that I have the diagnosis, I even am considering never having children, because I can't imagine having a horrible flare up and having to take care of someone else, when I can barely take care of myself when I am not well...I am just rambling at this point, but I just want to know if someone else understands how I'm feeling.
I wish that this monster would leave me alone.
0 likes, 5 replies
linda32054 beehall
Posted
Hi BeeHall, Of course your miserable...Nothing worse than having those awful lesions in your mouth. You can't drink or eat without pain. You'll just have to stick with foods that are way less irritating to your mouth. I used to eat only yogurt, applesauce, oatmeal, mashed potatoes,eggs with no salt or pepper. if you have to brush your teeth use a child's toothpaste as it has none of the peppermint or spearmint in all the other tooth paste.
The best doctor to see is a dermatologist. I have found that they are the only ones who under LP. .you might need a biopsy as that is the only way to make sure it's LP. Then if it's confirmed there are many prescription drugs out there that can help your mouth to heal. I currently use Cyclosporine twice a day. It works great on me, but many people take other things.
Good luck,
Linda
mary_pooh beehall
Posted
Bless your heart I and fellow sufferers really do understand how terribly painful olp is and I have actually fallen out with my sister over it she thinks I just have an ulcer get over it !! I wish more doctors would suffer with this then maybe more research would be done . The alcohol really will irritate it so now I only drink water and even stopped caffeine (chicory coffee instead) it's amazing what you can get used to when you have to. I would rather eat/drink only things that will not make mouth worse. Anyway I've lost my taste buds so it's no big deal !I was tested positive for Epstein Barr virus and I'm convinced this is what's causing me to feel so lousy lots of info on Google about this link between ebv and LP it's part of herpes virus and I think LP is similar to herpes !? Keep talking to us all it really helps to share tips and have a moan and keep us positive my love xxx
john71813 beehall
Posted
Hi. I lost 7 Kg when I first got it (having also had aphthous ulcers as a teenager and beyond), couldn't eat chocolate without it being excruciatingly painful, etc. Hydrocortosine paste and similar were useless. Betnesol mouthwash made a real difference though. I haven't had any steroid side-effects outside my mouth, and soon got to just chewing the tablets rather than dissolving them first, and taking care to spit out thoroughly after about 10-20 minutes. If I intensified the treatment for relapses I tended to get thrush which I treated with over-the-counter daktarin oral gel. The OLP never properly went away though, and after about 15 years it also started attacking my gums so I got pretty desperate, had my mercury fillings removed, and read all I could in the scientific literature. It is an incredibly poorly researched area. A paper caught my eye saying that in theory green tea might work because it decreased T-cell activation in the immune system and also inhibited enzymes that might be involved in tissue breakdown in the ulcers. I found that holding a Holland and Barrett green tea tablet against the ulcer for ten minutes or so till it went soggy and gritty helped me heal ulcers in two or three days where previously they would last a month. I also started taking the tablets orally, using 3-5 times the maximum dose stated on the bottle. I got the dose from trials using green tea for other conditions, but the safety of using such doses in these trials was only based on a limited follow-up period. It had caused liver damage in large doses in rats, but I've had this checked a couple of times in the 10 years or so I have been taking it and my liver function tests are normal (despite a regular intake of red wine). My mouth is now pretty much normal, with occasional minor relapses after a viral sore throat which seems to trigger it. I do still take the betnesol (1 mg twice daily for 10 mins as mouth wash) but haven't had thrush for ages - the tubes of Daktarin in the cupboard have passed their expiry date. I am not sure I will ever be able to stop treatment, that seems to be the nature of the condition but apart from being incommunicado for 10 minutes either side of the day I now lead a life free of pain and discomfort from the condition and my dentist says my buccal mucosa looks pretty normal compared with how it used to. I hope you find this all interesting and useful.
john71813
Posted
julia52834 beehall
Posted
Hello Beehall, Yes this along with most all autoimmune disease is pretty nasty! I’m sorry you are struggling and I also find most people do not understand! In my opinion the best doctors to help are functional medicine doctors. They are not covered by insurance and can be pricey but they will work with you and try to help without using harsh pharmaceuticals that generally may cause damage in other areas. There should be plenty of functional med. docs in your area. I just had my last 2 mercury fillings removed from my mouth and am hoping to get some relief. I also follow a strict anti-inflammatory diet (AIP) and stay away from as many chemicals as possible. I am 59 and have had Lichen planus, Sjogrens, Raynauds & Rosacea for 20 yrs. Hope you find a doctor who will work with you to get to the root cause and be able to heal??