Hello all,
For about the past 6 months or so I have been suffering from what appears to be exfoliative cheilitis. This is not an official diagnosis from a doctor, however, I believe I have EC (maybe I don't, who knows). I will try to be as descriptive as possible and feel free to ask me any questions you may have.
Here is a description of my condition:
Every 2-4 days the skin would start peeling.
Skin turns white when coming into contact and becoming very soft and "loose".
I rub off the white/loose skin and the result is a very shiny and smooth lip.
I feel the skin regenerating very quickly after I rub off the dead skin, and several minutes later it looks and feels "tight" when stretching the skin (smiling).
Typical lip texture is restored (vertical lines), however, during the next couple days, the skin starts tearing and splitting and eventually peels again.
This process repeats every 2-4 days.
During this process I also form a white line of skin where my lips touch eachother; during the day after a lot of talking and especially in the morning when waking up. Another thing that bothered me is that my lips were STICKY. The lips would stick together whenever they came in contact with eachother and that made talking a little awkward.
**Note, I am not currently healed at the time of this writing**
Story:
During the summer of 2016, I visited Las Vegas. I got intimate with somebody there and when I returned home I noticed some issues with my lips (very small, red bumps/iritation). I was concerned that I may have gotten oral herpes. I went to a doctor who told me it was NOT herpes/cold sores, only contact dermatitis (maybe I was allergic to a chapstick I used or something). The doctor gave me a steroid cream for my lips and also an oral steroid to help with the allergic reaction. About two weeks after using the steroid cream/oral steroids, this EC issue started. I don't remember exactly how it started initially. I started visiting more doctors about this new problem. One doctor still believes its allergy related. Dermatologists think its allergy related. Finally, the most recent doctor believes the steroid cream I originally used was TOO strong and damaged the skin on my lips (it really was a very strong steroid.. multiple doctors said I shouldn't have put it anywhere near my face... of course). I didn't have much faith in that last doctor though... It had been several months after EC started when she told me it was due to damage and it just needed to heal. I thought that if it just needed to heal, it would have healed by now! So, at the time, I didn't have any answers.
For the past 6 months, this issue has been the center of my life. It's negatively impacted my social life and some anxiety and
Depression has resulted. Nobody had an answer for me and everybody on the internet had their own theory that complicated things. I felt hopeless and felt I'll never get any better. Every day I've researched into nutrient deficiencies, infections, yeast, heavy metal exposure, sun burn, allergies, auto-immune diseases, EVERYTHING you can think of I've researched heavily. I've tried going gluten free, I've meticulously tracked my vitamin/mineral intake, I started eating paleo, increasing my Omega-3s and decreasing my Omega-6 fatty acid intakes, ensured my dietary mineral ratio's were "correct" (ling zinc/copper, calcium/phosphate/magnesium, etc). I've tried many different lip balms and natural moisturizers (also the constant moisture method with aquaphor). I increased my exercise and tried sleeping more. NOTHING made a difference at all. I may be healthier due to these changes, but the lips have not changed.
In attempt to keep the hope alive, I've decided to revisit the theory that the lips are simply damaged and must heal. With the assumption that this is a wound attempting to heal, here is my theory/assumptions:
Lips are sticking together: This is not due to dryness or infection/candida or
Sugar or saliva. This is due to newly regenerating skin that is trying to form on the surface, however, it is being disturbed when the lips contact eachother. When the lips are touching eachother, the regenerating skin is forming between both lips. Instead of the skin forming itself on each respective lip, it forms between the lips at the contact point, which fuses both lips together. When you open your mouth, you break this fusing and it will stick a little bit.
The "white line" - This line is where your lips come in contact with eacother. The external portion of the lips (that don't contact eachother) heal just fine and look quite normal, however, there is a noticable "line" where the skin isn't healed. That's the contact point where you keep opening and closing your mouth and that part can't heal because you keep disturbing the newly regenerating skin. Notice that the peeling and cracking always starts at this line. That's the weak point. It turns white just because it's dying and peeling off with saliva/water contact.
Weird.. but important point in my theory: The cracking and peeling and "tightness" - I believe the skin feels so tight and eventually cracks because during this rapid healing phase, the skin starts healing and adapts to your typical, neutral mouth "expression". If the skin is healing and you have a neutral expression (for example, not smiling), the skin will start healing in accordance with this expression. Important question: What if after you immediately rub off the dead skin, you open your mouth wide and smile widly. Will it then heal in accordance with this wide mouth expression? If it does, then whenever you smile or open your mouth wide, the skin wont stretch and feel tight.. because it healed in that position.
Working under these assumptions, this is something I just started trying:
I'll call this the SMILE method, and this is what I have started trying:
Woke up Saturday morning 3/18/2017
Skin was very loose and white (I put a good amount of shea butter on them the night before, because I wast just trying anything).
As per the normal procedure, I took a shower and rubbed off the dead skin.. revealing red/raw/smooth lips.
**IMPORTANT** I DID NOT PUT ANYTHING ON MY LIPS. I layed down in my bed, looking directly up at my ceiling and opened my mouth wide and smiled wild. I also tried moving my lips away from my teeth. Essentially, I just tried stretching my lips maximally and pushed them out a little bit away from my teeth. The reason I was looking up at my ceiling is to keep my saliva away from lips the best I could.
I just layed there for a while, not letting my lips touch together. I didn't hold the wide mouth expression always, as it gets uncomfortable. I moved my lips into different positions just to give my jaw muscles a break, but I really tried to keep my lips from touching eachother (especially the corners). Sometimes I would also breath in through my mouth to dry up any saliva. After a while, I looked in the mirror and noticed the lip texture returning like it usually does, but the "line" was much deeper inside of my mouth. This line formed around the area that my lips touch my teeth, as opposed to the more externally facing line that would form from lip contact. So perhaps the skin is damaged on the inner side of the lip as well .. and could be disturbed from touching the teeth. I could also smile and stretch my lips with minimal tightness.
At this point, I was up sitting at my computer and still tried to keep my mouth open as much as I could, sometimes smiling to keep it stretched but mostly had a netural mouth expression. Sometimes if I got saliva on my lips I would dab it up with a cotton hankercheif. Keeping saliva away from it seems to be helpful during healing. After a while, I figured it was safe to put a little bit of moisturizer on the healed portion, just to help with the elasticity and prevent excess dryness which will happen when you breath through your mouth and have it open all day. I'm not sure its really important what kind of moisturizer you use, but I recommend something that isn't too sticky (Beeswax lip products and aquaphor are sticky). Perhaps coconut oil or some other oil (just use a very very thin layer). I'm also experimenting with food-grade vegetable glycerin as a moisturizer (I came across a medical publication as well as another post on this forum about vegetable glycerin and borax).
You can google for "exfoliative cheilitis borax" for the medical publiciation and "exoliative cheilitis borax dee" for Dee's post on CureZone.
At 8:00PM, my lips look really good. I haven't seen this skin texture in a long time and it feels very promising. However, I still have that "line" that I need to heal.. but it seems more challenging since its coming into contact with my teeth and saliva usually pools up in that area. You can eat food while healing, but be very careful. I tried to keep all saliva and food from touching the lips.. usually eating with my head up towards the ceiling and chewing the food in the back of my mouth. Just treat them very delicately no matter what you are doing. I think this may be the answer... just need to address the healing on the inner portion of the lips, which may be helped with the vegetable glycerin/borax. Not sure yet. After roughly 12 hours of this method, I've seen more progress in healing than any other time in the past 6 months.
If I make any more progress or have any other ideas about healing further, I will be sure to make updates. Please ask any questions about what I'm doing and I'll answer the best I can!