Tuesday, November 30, 2010

Introduction: My years with severe Pompholyx

Hello to you fellow Pompholyx sufferer,

This is a short blog about my experiences with Pompholyx. I do not boast having a single cure but this outlines my path to relative recovery. Hopefully this will shed some light for you.

My name is Edwin and I first contracted Pompholyx on my feet in 2002 when I was 18. I never found a solid reason behind it but the main suspect was when I cut my toe inside a sports shoe. I wasn't wearing any socks so it may be that the plastic materials and sweat seeped into my wound. It first happened as tiny postules on my toe. I thought it was Athlete's Foot. After a few years it became a minor nuisance, thinking it would fade after a while.

Then came 2005 when things started getting worse. The postules grew on both my hands and feet. It was so bad at times I could barely walk or do anything for that matter. It would come in phases, sometimes lasting a week or more before the postules would dry up and the skin would peel. How happy I was when that first happened, but then it kept repeating.

Sometimes I would pick and burst the postules out of sheer frustration and anguish. The fluid would seep out but it would just build up again. I don't need to remind you this is something you should not do. After years of bursting them I contracted fungus on my nails. But that was aptly treated in the end.

Now, I'm sure you know the symptoms all too well at this stage. So let's move on to how I began to treat it.

Blood results were normal and tests on my skin revealed no fungal infection. First off, western medicine and topical treatments were useless. I've tried topical steroids and all sorts of skin cream. Even some strange Chinese-made cream called 'Snake Ointment'. I also tried PUVA treatment, no luck there and far too expensive. Most dermatologists said there is no cure for Pompholyx, only ways to make me feel more 'comfortable'. Not satisfied with this, I moved to Hong Kong, my parents' place of birth to seek treatment from Chinese medicine.

If you're a Westerner I understand your skepticism towards Chinese medicine. I was too, even though I am Chinese by birth. And yes, some doctors I saw were a complete waste of time. I've tried the most bitterest concoction ever to acupuncture and even learned 'chi kung', a form of meditation to relieve stress and apparently helping to boost my immune system. Most doctors said it was just a form of Athlete's Foot, much to my bemusement.

I even flew to Vietnam on a whim to seek out a mysterious doctor. He was recommended by a family friend who said he once knew someone with a severe skin condition and that he was cured by this doc. What the hell. I went there, found him but discovered he gave me oral steroids. Sure the postules went away but not without serious side effects. I had to stop taking them. Then there was a time when I had to travel deep into Mainland China on a rickety bus to a Buddhist-trained doctor. Now he had an interesting diagnosis: He heard about my story with the sports shoe and reckoned I suffered from chemical poisoning. Apart from the usual bitter medicinal soup, I had to soak my hands and heat from the steam of the soup, with tobacco. Apparently this was a way to kill the germs. After a few months, not much improvement. So screw him.

The last Chinese doctor I saw was a bit closer to home. He is known for curing 'strange sicknesses'. He said my liver was the source of the problem. The liver had been damaged and was not able to get rid of the toxins and so they would rise up to the surface of my skin, i.e. My hands and feet. According to Chinese medicine the hands and feet are the 'end meridians' of the body, so that's where the toxins would go. So about a year of taking his ever so bitter medicine, it did see drastic improvement. I also had to stop eating shellfish as it irritates the skin. While I wasn't 100% cured, I inadvertantly stopped taking his medicine due to work. The flare ups still happened albeit less serious. I noticed the postules have almost been eliminated from my feet but my hands still had some left.

I decided to stop taking Chinese medicine, at least for a while, because it could cause long term damage. Apparently they are heavy in metals and would cause some side effects. So then I decided to switch to lighter meds or vitamins. That's when I discovered Milk Thistle. Using the liver diagnosis I started taking Milk Thistle to boost my liver. I also found this awesome cream called Emu Oil. Of all the creams and moisturisers this was the best. But remember no cream I've ever tried was able to treat my condition, only to make me feel more comfortable.

After about a year, my condition has improved again. So now it's 2010 and the postules are gone from my feet and the flare ups on my hands occur at much longer times apart (about a month) and less serious. Maybe up to ten small postules at the most on one of my hands? The left hand is minimal. Still it doesn't stop me from doing my work. I'm a photographer and film maker so it does require me to be 'hands on' a lot! I also run marathons now since my feet have healed up - something I promised myself if I ever got better.

This experience has made me more conscious about my health and realised I had been taking it for granted. I now take uber good care of my skin. I've cut down on drinking (I'm Irish after all) and quit smoking since. So, after reading all this, now you know it is possible to recover from Pompholyx. Or well at least 90% recovery..

Please read my other posts for an in-depth analysis of my symptoms and the various ointments and medicines I've tried over the years.

How to make yourself more comfortable

Isn't this sickness so delibitating? It affects our hands and feet, our fucking limbs! So yes, I understand how difficult it is to get around and 'do stuff'.

I had to wear cotton gloves for a few years and remember being so self-concsious about it. Nicknames included Michael Jackson. The important thing is to let your skin breathe as much as possible. When you're at home, walk bear foot. Wear sandals or whatever shoes that has at least a bit of circulation. Sweat is a dangerous issue and can lead to flare ups/outbreaks.

Use the ointments I recommended in my other post.

I know it's difficult but try to stay calm during flare ups. You could give 'chi kung' a shot or Tai Chi. These require much less movement than say, Yoga. And you know how hard it is to be 'agile' with your conditions. If you smoke, do your best to give it up. Alcohol also swells and irritates the skin so avoid that too, especially during flare ups.

If were like me, always picking at the blisters, then they have a tendancy to leak. It leaves that sticky stain on your socks etc. Spray some deoderiser on the affect areas. The best I used was a tea tree oil spray from Australia. Wrap your foot in gauzze then wear 100% cotton socks. And again, try to wear sandals etc.

Count yourself lucky if you live in a rather low humid environment. I live in Hong Kong where the humidity is intolerable!

If you have trouble falling asleep as I often did, take some Camomille tea and melatonin.

List of ointments and medicines

I've taken way too many Chinese herbal medicines to list them. Besides I do not have the prescriptions any more. And they wouldn't be in English. If you do want to try Chinese herbal medicine the most I could do is refer you to the last one I saw. He is in Hong Kong.

Ointments, creams, lotions etc:
I will avoid using water-based lotions because I've been told to keep my hands and feet as dry as possible. I have tried E45, vinegar, sea salt, aloe vera, topical steroids, oatmeal and snake oil.

I wholly recommend Kalaya's Skin Repair with Emu Oil from New Zealand. It is the most soothing moisturiser I've ever used. Emu oil is also boasted to have really good nutrients for treating sensitive skin. I couldn't live without when my skin became dry.
When my hands become unbearably hot and irritated, I would either pour a good few drops of

French 'Ricques Peppermint Cure' oil or pour some into iced water and drench my hands and feet in it. Peppermint is cheap and effective way to cool the skin and also has some anti-bacterial properties. The bottles are small so they're handy to bring around.

Another handy item to bring around is this Tea Tree Oil spray from Australia. I'm sure there are many on the market. It mainly acted as a water-based deoderiser but with the all important Tea Tree Oil.

Vitamins & minerals:
Over the years I've tried Primrose Evening Oil, Fish Oil, Chinese herbs, all sorts of detoxifying tea.

The best results I've seen is Milk Thistle. I've taken them for about a year and it boosts my liver to help get rid of the toxins. My condition has slowly improved once again.

My symptoms of Pompholyx

Postules/blisters and clear vesicles are the main symptom. They would start growing en masse at varying intervals. Quickest can be a single week or over 2 months.

Blisters/Postules would tend to grow on the sides of my hands and feet. Less on the soles of my feet but more prone on the palms of my hands. It has never grown any where else on my body.

I wouldn't describe them as being terribly itchy as others have noted. They do grow large enough that I would feel some pain. Any sort of contact would result in mild pain.

During severe flare ups I also notice my hands would turn slightly redder and very warm. Almost as if you're on fire.

When the time comes most of the blisters will start to dry up and the skin would peel. After the new skin has grown the symptoms would repeat.

I also noticed flare ups would occur if I sweated a lot. Once I was wearing thick gloves during sports. It was hot and sweaty and the next day a flare up occurred.