Exfoliative Cheilitis and me


EXFOLIATIVE CHEILITIS

To start I’d like to say that I’ve never contributed to this thread before and that I do not intend to do so again. However, my posting should be detailed enough to answer any of the queries that may arise and also offer some telling pointers on living with and ultimately overcoming exfoliative cheilitis. Although I never engaged in this thread I did read its contents on a number of occasions when my condition was first diagnosed (over 4 years ago). Needless to say I found little comfort as the majority of the commentaries were of people’s negative experiences rather than the positive testimonies of those who had made a full recovery which I had hoped to find. At the time I was frantically searching for a cure and putting my life on hold while I did this (something which in retrospect I think was foolish).

I feel duty bound to contribute now that I have finally gotten better and I hope that my true testimony can offer hope to those of you who are despairing. By way of putting the negative comments on this site into context it is a trait of these type of sites that the majority of testimonies are hard luck stories as those who do get better quickly are unlikely to have troubled themselves searching on the internet or to have contributed to any thread such as this, in fact I’d counsel against using the web for any medical research as the majority of the information that you will encounter is going to freak you out and the majority of cases that you are going to hear are those of individuals who have succumbed to self pity and have let their condition, whatever it is, dictate their life. Take exfoliative cheilitis for example, something which is essentially trivial in the greater scheme of things (being aesthetic and sore rather than terminal and excruciatingly painful), yet people seem to have let it ruin their life, and they now want to share their negativity with others, I’d counsel against paying mind to these types as you only live once and spending your time focusing on a small problem is to waste a life. Remember there are always people who are far worse off than you. Do you think that someone with terminal cancer would worry about having lips that dried and scummed up if he could get better? I couldn’t see this for years and I did succumb to self pity and negativity but thankfully things changed for me as I got older and now looking back I can say that I wouldn’t change anything, living with exfoliative cheilitis has made me the person that I am today. It was only when I stopped obsessing about my problem that it actually started to improve. I’ve got no medical qualifications but having spent years being poked and prodded, visiting a myriad of specialists and trying all types of conventional and alternative medicine I feel that I am being truthful when I say that skin conditions are in the main psychosomatic so if you can learn to fully accept your condition then your life will be 100% better and you may even recover, although it won’t be important. Acceptance is the key, remember nobody is perfect. Well apart that is from me!!

Now as promised here is my testimony…

I have always been quite an obsessive personality and during my teens this tendency grew more pronounced. While outwardly I came across as being confident and cocky in reality I was constantly preoccupied by my appearance. I used to pick at spots and other imperfections and I would spend hours looking in the mirror. In retrospect I displayed all the classic symptoms of an obsessive compulsive. I also dabbled heavily in drugs and alcohol and although I’m no saint today I do live a much healthier life. The over dependence on drugs and alcohol was my crutch and it helped me to escape my hang ups for a while, however, as all recreational drug users will agree, problems are magnified by come downs. Don’t get me wrong it was also fun too, and in no way do I want this to be construed as an attack on drugs, for which I am definitely pro-legalisiton, feeling that people should be able to make their own informed decisions.

The spectre of exfoliative cheilitis first reared its head when I was 20. At the time I was smoking copiously, both cigarettes and joints. My lips unsurprisingly, due to my lifestyle, began to dry out. I began to use Vaseline heavily and I would also pick off the dry skin. I became obsessed with not having any dry skin on my lips as I thought that it was very unsightly.

Anyway a few short months later I had reached a stage where large crusts of dry skin were forming on my top lip even when using the vaseline and picking the skin off. I was in a complete decline. It was at this juncture that I went to see a dermatologist for the first, and not the last, time of my life. Needless to say, as was the case with the majority of the doctors who I saw, he didn’t have a clue how to treat me so he prescribed some type of steroid cream (if you ask me conventional medicine is too reliant on treating symptoms rather than the root cause). The ointment that I used was definitely not intended for use on the lips, however as he was wearing the “white coat” I took his word for truth. After a number of weeks application my lips, both top and, the previously unaffected, bottom had deteriorated greatly and I was in almost constant discomfort with a dull distracting pain in my lower lip. From here on I spent years trying a whole host of creams, visiting a hospital’s worth of doctors and feeling very depressed. Everyday life was a complete struggle. Every little thing caused me stress, going for walks, exercising, talking, eating with people around, drinking, working. These things freaked me out as I was constantly aware of my lips and worried that they were scumming up. I was stuck in a complete rut from which I saw no possible escape. I managed to struggle through college and after graduation I spent the best part of a year moping in my house, bringing misery to people around me and myself with my negative thought patterns. To the people that knew and loved me this must have been a terribly frustrating period as there was nothing seriously wrong with me yet I was giving up on life.

This changed when I was semi-forced into getting a job, although the work was terrible and I was in an almost constant state of panic every day for the entire duration of my tenure with the company it also made me realise that I could work and in essence lead an outwardly normal life although I didn’t feel normal. During this time I also had my first serious relationship since the beginning of the lip debacle. I had previously chosen to ignore all the amorous opportunities that presented themselves as I was scared of being rejected. So although I was still really struggling, and believe me I was, in fact I was so stressed during this period that I developed a painful gum condition called “trench mouth”, so named as it was first recognised as a condition during the First World War, I was living life and after a while things began to get easier as I got over the initial crippling fear. I changed job and ended up working in a European capital for a while, where the hot temps helped to get rid of the problem with my gums which I had for over a year and also the sun was beneficial for my lips, although I was careful not to get them burnt. I found the oil type suntan lotions, like p20 to be the best as they are easy to apply and don’t turn the dry skin/ reforming skin white.

I then returned home to take up a job with better prospects and 1 year down the line here I am. After 6 years + of using various creams I have now gone a number of mths without using any cream at all, something which I had never thought possible. Infact I’d be crippled with fear leaving the house without my lip balm container full of cream. My lips feel great, sometimes they dry up but probably only slightly more than those of any other normal person, however back in the worst days they would dry up in the space of a few hours. I have broken this cycle and my lips are, to coin a dermatological phrase, now self-regulating. I don’t worry anymore if there is flaking skin as I know that this will be gone within a short while and that nobody is perfect. My lips are no longer a factor in my life, there was a time when I couldn’t think of anything else, literally not a second went by when I was not thinking of my lips, when opening them or closing my mouth, talking, eating, and I was always working out when I could next apply cream without being seen (I think getting over this particular hang-up was instrumental to being able to accept the condition), looking back I was completely insane. However now, after 6 years I lead a healthy, full life, I socialise, play sport, go out with women (at least when I’m lucky enough to find one who’ll put up with me!) and I have an ostensibly successful career, although hand on heart I don’t think that I’ve found my calling in life. If someone was to say that I’d be in this position during my darkest days I would have laughed, back then I couldn’t see a future, and that is really the crux of why I’m writing this, to offer any people who are feeling despair a ray of hope.

I’m not going to bother listing all the treatments I tried as this testimony is long enough already, so here’s what worked for me.

• Sun, (in moderation using oil based lotion with high SPF like P20)
• Exercise, there was a time when I tried antidepressants. Don’t! I lasted about 3 days, my Dr told me that after I got over feeling ill that I’d notice the benefits. In my opinion if you’re taking something that makes you feel bad it is your body’s way of telling you that you should stop. I did and in retrospect I’m very glad that I made that decision as I wouldn’t like to be reliant on a mood enhancer and I know people who have had difficulty getting off them. Sobriety is something I have grown to treasure. The best way to beat moderate to severe Depression is exercise, it’s a natural way of boosting serotonin and all the other happy chemicals released in the brain. Start to exercise regularly and don’t worry if your lips scum up, you are already covered in sweat, you’re shower will sort this out, plus afterwards your lips should be crust free if you break enough of a sweat!
• Diet. You are what you eat! Books like “100 Super Foods” or “Foods to Beat Depression” will point you in the right direction. Eat loads of fresh fruit, vegetables, fish and stay away from processed crap. Take GLA and Essential Fatty Acid supplements if you fish isn’t pleasing to your palate. I find juicing vegetables useful when I don’t have time to cook, which is often. Carrotine from carrots is great for the skin, all this type of info is explained in books like those named above.
• Don’t Smoke. I’ve struggled with this one for years, especially when out for a few drinks. I smoked a rake load of cigarettes 2 weekends ago and my lips dried up very badly, there is a definite correlation between the start of my condition and smoking so I’ve decided to never touch those nasty cancer sticks again.
• Trim Instead of Pull, pulling and picking skin off my lips is how it all started so try to avoid this, instead use a nail scissors/ other small sharp scissors to cut off the edges of crusts of skin as they begin to fall off. It’s great fun!!
• Aquadrate Lotion, this is the last cream which I used on my lips. Available in most pharmacies in England. It comes in large tubes so I used to purchase empty lip balm sized containers and store the cream in this. Apply as sparingly as possible, I used it for about 2 ½ years and then started to phase it out without thinking as I obsessed less about my condition, grew in confidence and my lips began to self regulate again.
• N-lite Laser. I had a number of treatments with this laser under the care of my last and ultimately best dermatologist, Dr Anthony Chu, Hammersmith Private Hospital, Hammersmith, London.
• Acceptance. Finally accepting that I wasn’t perfect and that I, like the majority of the people in the world had a condition that I just had to deal with. I gave up obsessing about getting better and putting my life on hold until I did.

So these are the factors which I attribute to getting me into the position that I am today. If I had to choose I’d say the key was acceptance. The Aquadrate cream was also very useful as it made my lips feel almost normal, and didn’t give them a glossy look (ie like vaseline, lip balm etc). Also, getting back into exercise and eating healthily contributed greatly by getting me out of the slump that I was in.

So that’s it, I hope that this is of use. By way of a conclusion I’d like to say that exfoliative cheilitis isn’t that bad, try to make the best out of your life as it’s the only one that you are going to get, unless of course you believe in reincarnation!

Muchísimo suerte