Shingles: The Tip of the Iceberg

A weird sensation in my left pinky finger was the tip of my shingles iceberg. When the odd feeling first occurred in November four years ago, I kept looking at my pinky—was I getting a blister? Did I have a paper cut? While I didn’t see anything amiss, I was becoming aware that I was dropping things from the same hand. A lot.

Over the next two weeks, “clumsy” rapidly progressed to no control of my left hand. I’d pick up something then be stunned to see that object on the floor—no sensation of losing my grip, let alone dropping whatever I just held in my hand.

At this point, I was in a bit of a panic, suspecting a muscle degenerative disease such Lou Gehrig’s or MS. When my hand started to swell, so much that my fingers turned blackish-blue, I saw my GP.

She didn’t know what it was. And despite my protesting that it wasn’t trauma (i.e. I think I’d remember slamming it in a car door or something similar), she sent me to a hand surgeon. Their x-rays eliminated fractures (of course.)

I spent the next eight months undiagnosed and accumulating escalating symptoms, including a 24/7 pounding headache, running constant fever of 100, exhaustion (I’d spend 12 hours a night in bed but wake up just as exhausted), constant nausea and incredibly bad brain fog.

During this time, I saw a variety of doctors, all of whom missed the diagnosis. Just one example? A virus specialist (a $1,200 out of pocket fee), who tested my blood for diseases such as syphilis while making me feel as if I was wasting his time. Unfortunately, his attitude was all too common. I knew something was really, really wrong; having doctors asses me as “fine” to then make thinly veiled suggestions I was a hypochondriac was not helpful.

To be fair, my presentation was a bit odd. And the shingles hallmark “dew drop on a rose petal” (lesions of a tiny crystal on an inflamed patch of skin) was slow to arrive. And by the time it did, I was so scarred by the western medical system that I couldn’t face one more doctor, huge bill and “you’re fine” diagnosis. So I sat on my couch and cried during the outbreak phase…

The turning point was switching to holistic health, and consulting a naturopath, the fabulous Dr. Kimberly Navarone. Not only did she take my symptoms seriously, she was honest.

While Dr. Kim said she didn’t know what it was, she suspected something viral, and wanted to treat it as such. We started with two tinctures (brewed medicinal herbs). I soaked my hand in one and drank the other three times a day. Within a week, my pounding headache was gone and my fever broke.

Finally headed in the right direction, I continued to work with Dr. Kim and a variety of antivirals for two years. I was warned they’d trash my stomach and that they did (I threw up at least once a day for nearly two years). I know that sounds crazy (why would I stay on them?!) but as all the other symptoms were subsiding, I knew I had to stay the course.

Especially after learning that if you don’t take antivirals within the first week of shingles symptoms, your body needs up to three years to heal. And I wasn’t diagnosed until nearly a year after my first symptoms. At the dermatologist for my annual skin screen, I decided take the standard end-of-any-appointment “do you have any questions” opportunity to describe my symptoms from the past year. She didn’t need any time to think. She immediately said, “oh, that’s classic shingles.”

Today, four years later, the lesion scars are faint on my left hand. The nerves from the tips of my thumb, pointer, index fingers and down to wrist regenerated about two and half years in. (The WORST pain ever—accidentally grazing my hand against anything during that time resulted in shrieking—I definitely freaked out a lot of people. I had to sleep with a sock on my hand to compress it and prevent myself from shrieking myself awake.)

But, I still don’t have full use of my left hand. My pinky and ringer fingers curl in. That part of my hand often is “dead” for months at a time (can’t feel anything.) But, as I also have phases (in fact, as I type this) of pain and tingling, I’m hopeful these nerves will regenerate too.

In conclusion, I’d like to prevent anyone and everyone from experiencing what I did, and bust some myths while I’m at it:

Prevent shingles by getting the shot the next time you’re at the grocery store. Shingles can be a very serious disease. You need to weigh the pros and cons of the vaccine only after being well informed. Especially because the last time I checked, the shot was only 50% effective, and activated the disease in many recipients. Therefore, don’t pick up a shingles shot with your bananas—first assess the risk factors.

It’s an “old person’s disease.” While seeking diagnosis, doctors would immediately rule out shingles because I was a healthy, athletic female. Yet, while doing my own research, I learned that women ages 40-59 are the second most common population. (Many believe it’s due to peri-/menopause because when hormone levels dip, women lose some of their helpful regularity and protection elements.) And, once I diagnosed, I heard from SO many people who knew a cousin, friend, etc. who had it while in high school, college, etc.

It’s the sexual disease herpes. While “’herpes” is part of it’s scientific name, herpes zoster, shingles is a seemingly random reactivation of the chicken pox virus in your body. Not a lot is known how/why still today.

It’s not contagious. If you have shingles, and are experiencing the lesion phase, you can transmit the chicken pox virus, not shingles, to someone who hasn’t had chicken pox. Therefore, it’s recommended that you avoid contact with people who have not had chicken pox during your outbreak stage.

The outbreak only occurs on your torso. While the back, especially radiating out on one side from the spine, is probably the most common locale, shingles lesions commonly strike along the hairline, one side of your face, and can occur in more atypical spots, such as a hand or foot.

It’s not serious. Shingles vaccine advertisements have unfortunately created an attitude of “just take this medication for a week and you’re good to go.” Shingles can be very serious, even fatal. Since diagnosis, I’ve met people who’ve been blinded in an eye, gone deaf in an ear, etc. from shingles. Don’t wait to see a doctor—if you start antivirals as soon as you notice symptoms, you vastly improve your chances to reducing it to a mild case.

“I don’t have to worry about it.” While I’m not good with numbers, the odds are simple: If you’ve had chicken pox, you’re at risk for shingles. Although we now have a chicken pox vaccine (the majority of Americans born in 1995 [Generation Z] and later years have been vaccinated), many aging generations (Baby Boomers, Gen X, Gen Y) had chicken pox as kids, thus making them vulnerable to shingles. Therefore, we won’t see a shingles incident rate decline for a few more decades.

Next week: Swim autobiographies that I’d love to read (but aren’t written yet).

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Shingles: The Tip of the Iceberg

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