Hi,
I've just been diagnosed with Oral Lichen Planus this week after suffering and on a "dental watch" and now awaiting a referral to confirm skin and vulvar lichen planus. I've been all over researching this disease for a few weeks now and it's finally sunk in...... I have this condition in my mouth, on my skin, and in my lady part FOREVER. It was affecting me before hand not having a diagnosis, and usually with a diagnosis comes a name and a cure, not anymore. I have a name and I'm afraid I will feel this crappy always now. There is conflicting advice: avoid foods that are triggers, steroids, mouth washes, suppositories, paleo diet, gluten free diet , avoid sugar, carbs, caffeine, rough textured foods, hot foods....and so on. The only time my mouth seems "ok" is when I wake in the morning , I think because IV not eaten or drank anything. I use social toothpaste because the mint is like liquid fire, a special mouth wash with steroid and lidocaine 3-6 times a day and unfortunately it's mint! 😳🌋 tonight I'm feeling particularly depressed about it all. And this is the first time really. I also have Hashimoto's thyroiditis and because it's also an autoimmune disease this is probably why I am susceptible to other disorders. I would like to feel better. I'm always tired and stress at work isn't helping. I am going to my GP for blood tests because it's suspected I'm anaemic and or deficient in vitamin B. It's been an emotional week , health wise, for me and I'm feeling pretty badly about it all and I'm a very positive realistic person,,,,,normally. But right this minute I'm feeling a bit defeated. Does anyone else here have lichen planus? Can anyone offer some advice? Or maybe a kind word or a shoulder. Thanks in advance. X
Cheddahcat, I'm sorry. I don't have that condition myself, but my mom had it for a while on her "lady parts". She also has hyperthyroidism, likely due to Graves' disease. She treated it with topical corticosteroids, possibly with other topical meds. She was eventually able to get complete control of it.
It's so difficult when your body feels as if it's starting to fail prematurely. I hit a low point 4 years ago, after being diagnosed with a painful chronic disease. It had taken over my life and I felt utterly hopeless about my future. Thankfully, a whole lot of trial and error with medications, diet, etc. have gotten it to where I can tolerate it most days, and I barely remember that prior feeling of despair.
That first period of dealing with a new diagnosis, and the uncertainty about how it might progress and whether medications will work, is the absolute worst. It does and will get better. Stay strong, give yourself permission to take care of yourself, and confide in a few key supportive people, if possible. This sounds disgustingly trite, but my own ordeal made me a stronger and kinder person. I now look at people and wonder what their own hidden struggle could be.
Hi jayzeejay, thanks for replying. I've never heard of this disease before my diagnosis. It's comforting that you knew someone and got to see first hand, yet sorry to hear your mother went through it. Now that I look back over the past year, it's blatantly obvious, but I took the itchy skin symptom as a side effect from hypothyroidism. I'll have to play around with my diet and keep track of trigger foods I suppose. I've read that stress is a common contributing flare-up factor and my job is very stressful. So I can't change that. Maybe I can try to look at different ways of changing my response to stress? I don't know. But I am glad to post this on hear, like having some objective, sympathetic relatable new friends. My husband doesn't really understand it, and now it has a name he is a bit more sympathetic. I've told HR at work due to needing a day off for biopsies and other doctor visits to help me get back to healthy.
I couldn't agree more about changing approach to stress... I struggled with that after learning that stress could be a trigger for flareups in my condition as well. Not that I have any great answers, but simply being aware of my responses to work stress and considering them objectively has helped quite a bit. E.g.: What is this anxiety about? Is it fear of failure? What is the worst case scenario for failure here? What can I do to prevent that worst case from happening? What can I do to mitigate this anxiety now? (e.g. ask for a second opinion on a problem; try to share a heavy workload with a coworker)
I read a quote recently that's helped me also. It was something like: "Depression may mean you're spending too much time mourning or regretting the past. Anxiety often means you're spending too much time fearing the future. Be in the moment. Do the job that you're doing that moment."
Good luck, and good for telling HR that you'll need a bit of flexibility to deal with this.
Autoimmune lichen planus
