My Progress

This is my first time posting here although I have been digging around in this forum for about a year and a half. First I'll describe my condition (I know you guys appreciate that). When they were at their worst, my lips would peel every day. Sometimes the skin underneath would be a little pink, sometimes very raw. The affected skin on the bottom lip went from the wet line all the way to the outer edge. On my top lip the peeling portion went from the wet line to about 1/4 of an inch away from the border, so there was about that much soft, normal skin there. After showering and eating/drinking the affected areas turn white and soft and the edges peel up. When dry they would harden and some large areas would indent into my lip.

I have tried many things to help my condition that have not worked. I've tried drugs such as steroids (topical and systemic), antifungals (topical and systemic). Lysine, fish oils, vitamins, etc., etc. I've tried peeling them every morning and using emollients of every kind to keep them soft and from peeling. I've tried not peeling them and using emollients. I have been to many doctors, surgeons, oral pathologists, dermatologists, etc.

Now that that's out of the way, I can tell you that my lips are getting better. You guys are going to hate this, but what I've been doing is as little as possible. They are definately moving in a positive direction. The areas of soft skin are getting larger as the areas of hard, peeling, cracking skin are getting smaller. They are healing from the outside border toward the wetline. There is now soft skin on my bottom lip (about a 1/2 of an inch) that was not there before. Every time they peel the affected areas seem to be shrinking. These healed areas don't turn white and puffy when I leave the shower or eat/drink. The healing areas are a little flaky but the flakes are very very thin and they do not pile up on each other. The skin is very soft and doesn't crack open and the little flakes just float off. The peeling of the affected areas has slowed considerably. The hard skin even looks healthier and there are NO more indentions. Not one.

I have been very careful not to post anything until I have had long lasting results and these have lasted. The healed skin has been healed for a month and getting better.

Also I am only writing this as what has worked for ME. Though I feel strongly it will work for some of you as well. Some of you may need to see a medical professional if you haven't done so, though you may want to try this first for a while. Most of us have exhausted these avenues thoroughly.

Here is an outline of what I am doing:

First, I've actually stopped taking my vitamins. This may seem strange, but it seems to be making a difference. I've been taking them for a long time now and I've had my levels checked many times so I'm sure that I'm not deficient. Second, I'm using a good probiotic (NSI Probiotic 15-35 w/ Nutraflora). Thirdly, I started taking NSI Hyaluronic Acid w/ Ester C 140mg. This stuff has seemed to make a big difference, try it. I get all my supplements from Vitacost.com. I've started drinking a whole lot more water. This makes a big difference as well and helps the HA work better. I also have started taking Neurontin 100mg 3 times daily for anxiety. A very mild, non-habit forming anxiety medication. I don't use any balms or lotions of any kind now, but at the very beginning of this process I used a very very small amount of a lip balm from "Everythingshea.com". It's unscented, beeswax based and has no artificial ingredients of any kind. It was the best I ever used. I would phase this out as soon as possible if you use it at all.

It has been very important to me to NOT peel my lips when they are wet. This saturated skin looks like it wants to come off but if I let it dry I see that it is actually adhered. The only parts that you can take off are the drying edges that are COMPLETELY detatched. Very important. These are removed with a tiny pair of rounded tipped scissors, but do not trim to close to the adhered skin. Leave a little room. Do not not trim while they are wet either. Let them dry and see what you have. Do not pull or rub your lips. I also keep them as dry as possible except for showering. When showering I don't let the water beat down on my lips at all. This will peel them. What I do is put my hand over my mouth when rinsing my face and let the water run down my face and behind my hand. Licking your lips is very unhelpful in this process as well. I don't lick my lips at all because it peels them. Even though your tongue may seem harmless it is actually irritating to the healing skin, as is your saliva. I use a straw to drink liquids and only eat foods that I can pass into my mouth without disturbing my lips. If you have to wipe your mouth, pat them with a soft napkin. I also found it helpful to avoid eating anything dying (spaghetti sauce, fruit drinks, etc.) so that the dry skin does not become discolored, although this will happen from time to time. As for tooth brushing, I've bought a small tooth brush and dip it in a small amount of listerene and brush carefully. I found toothpaste to be too messy.

I hate to sound discouraging but your lips are going to look worse before they look better. I believe that all the abuse we've been putting them through has made them very defensive. I thought I was leaving them alone enough, but when I was honest with myself I realized I still messed with them alot, even if it was subtle. The less I irritate my lips with pulling/peeling/rubbing of any kind the better they look and feel. Don't worry if you peel a little too much in one spot occassionally or that the spot you thought was healed has peeled again. You will get another chance. This is a SLOW process, but it's moving in the right direction. Just give it a try. It took a few weeks before I saw much change. My lips don't look great all the time, (although now, sometimes they do) but I just go on anyway. I have a full-time job as a vet tech, and I have to talk face to face with people every 5 minutes. Sometimes I am uncomfortable, but I have to keep reminding myself that my lips are a very small part of my being. I'm sure we all have great hearts, and we need to let that be what we feel is most important about ourselves, not our lips. We are not a set of lips with a person behind them. As I'm sure you've heard, this is not the your defining quality.

I am also a meditator. Mindfulness of my feelings and thoughts is very important to my mental health, especially about this condition. The thoughts are what are hurting us, not our E.C. Every fear and discomfort is just a thought that has probably not been looked into properly to see if it's really even true.

That's all I have. Sorry if it was too long for some of you. Please, if I've left anything out or if you have any questions for me that could help in any way, just post a reply to this message. I will check back frequently and also post updates on my own progress.

I love you guys, good luck.

Martin