The Monster on My Back

Posted on April 28, 2008 09:25 by dlovejoy

Everyone has a challenge, right?

I'm somewhat embarrassed to admit (having been TV-abstinent for years prior) -- lately Greg and I have been hooked on "House M.D.," the Fox medical drama about a painfully sardonic diagnostician. For Dr. House, the most fascinating puzzle is the one he can't solve, or can't solve easily.

Psoriasis is that puzzle for me, though I'd gladly do without this particularly paradoxical fascination. I've made it through numerous other challenges and found light at the end of many a dark tunnel; but this one remains the bane of my existence. Psoriasis is a genetic condition that most commonly looks like a skin disorder (red, flaky lesions on the skin), but is actually a dysfunction of the immune system. Quick tech synopsis from The National Psoriasis Foundation:

Under normal conditions, TNF-alpha (tumor necrosis factor-alpha) helps fight infections and communicates messages between cells. In people with psoriasis and psoriatic arthritis, TNF-alpha is produced in excess amounts by activated T cells. The messages communicated by TNF-alpha can lead to the rapid growth of skin cells found in psoriasis, or to the joint pain, stiffness and other symptoms associated with psoriatic arthritis.

Anything that activates the immune system (an impending infection, stress, extreme weather, lack of sleep, lack of or highly intense exercise, caffeine, alchohol, doughnuts, life in general) means a breakout of nasty lesions on the skin. The T cell hyperactivity that causes it can, in turn, drain your energy and steal resources from the immune system's regular activity. This means, doing something that's supposedly GOOD FOR ME can actually cause my skin to break out further! For example, eating certain vegetables or strawberries, taking vitamin C, or taking herbs meant to bolster the immune system leave me crazy with itchy redness.

I am a Half Ironman triathlete with the most balanced, nutritious diet of anyone I know. I make sleep the utmost priority. Almost every day, someone stares at my legs and/or asks, "What happened?" I think it doesn't compute that I could look as fit as I might, but have angry red lesions all over my limbs. Most people used to assume I'd just been trail running (which is true, but I'm not bushwacking that much!). However, in the last year the problem has exploded exponentially, I suspect due to GI troubles brought on by international travel.

(On the itch associated with psoriasis: It's not a "regular" itch, or even an intense one like a mosquito bite or chicken pox. It's an insidious, under-the-skin itch THAT YOU CAN'T SCRATCH, that actually feels like your bloodstream is carrying little Itchy Monsters throughout your system, and they're erupting at the surface. A couple of times I've ceased treatment, only to become unable to sleep because the itch was so mind-bogglingly intense.)

Here's the catch: There are no good treatments. Kind of like with ALS, cancer, and innumerable other conditions we wish were fixable by now, there's no cure.

For some people, simply cleaning up the nutrition, starting an exercise program, getting a lower-stress job...can kill the symptoms. Obviously, I don't need to exercise more.

A partial list of treatments I've tried over the last eight years: Herbs (at least 20 different combinations of recommended treatments), acupuncture, meditation/yoga, about 200 different topical ointments/creams/lotions, topical steroids, at least 25 different dietary modifications/eliminations, sunlight/UV light, pharmaceutical-grade fish oils, herbal oils, fumaric acid, hypnosis, at least 10 different supplements that are supposed to "re-balance" the immune system (such as Microhydrin), topical retin-A, Dovonex, an ayurvedic treatment package purchased over the internet from India, probiotics, anti-depressant and anti-anxiety medications, anti-histamines, anti-inflammatories, anti-biotics, anti-EVERYTHING, doing nothing in particular (didn't work). The list goes on.

You're not supposed to use topical steroids for more than a couple years, because they thin the skin and cause additional sun damage. I've been using them on and off for eight, and the damage has been a nuisance in itself. On a recent warm-water surfing stint, the friction of the surfboard leash against my leg (which normally would cause minor leash burn) ripped most of the skin off my lower leg. I patched it up with bandages and Tegaderm, stuck a double layer of hiking socks with the foot cut off over the leg, and kept surfing.

The only things that have made a visible difference have been: one particular anti-anxiety med (which had intolerable side effects), and being on vacation from work. Hmm, is there a message here? Wouldn't we all love to reduce our stress only to the chosen stresses we put on ourselves??

I'm currently on a gluten-free diet, and am focusing on re-balancing digestion. Doesn't happiness come from the stomach? :>

The only thing I haven't tried is a biologic drug. It's sitting in my fridge, waiting for me to inject it to my thigh.

Be the first to rate this post

  • Currently 0/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5