Nearly one year ago, in October 2013, a virus of Armageddon like proportions knocked me off my feet: the shingles virus. I’m not a crybaby when it comes to pain, but shingles made me cry—a major ugly-cry with guttural, indistinguishable sounds. I had heard of shingles, but had no idea that I was at higher risk for it. People with lupus have a 70% increased risk of developing shingles compared to healthy people. In a population-based study, patients with rheumatoid arthritis were more than twice as likely to experience shingles. In the hopes that my suffering can help you, I share with you my Shingles Diary.
- October 17, 2013—Appointment with my new TMJ specialist—had a headache that worsened after the visit. Did all of the jaw manipulation exacerbate my headache? Note: The headache was a clue of what was to come.
- October 18—Woke up with severe pain in my right hip. It’s so bad I can’t lie on my right side. Tried heat and ice. Nothing works. Searing, nagging pain that I can’t ignore. Is it piriformis syndrome to go along with my spinal stenosis and sciatica? I didn’t do anything extreme this week, did I? Icing and stretching the area for now. Note: Sudden, searing, unexplainable muscle pain on one side can be a warning sign of shingles.
- October 19—Couldn’t sleep last night. Luckily it’s Saturday so I can continue to ice my hip. The ice isn’t working. What is going on? Guess I’ll watch movies all day.
- October 20—Brunch with new friends. I can barely walk. It’s hard to sit. I pretend I’m fine. I don’t want to cancel on our friends. There is a new pain along my upper thigh. Ingrown hair? What the hell is this pain?!
- October 20 (Afternoon)—Oh. My. GOD. There is a huge rash along my upper thigh. What is happening to me?
- October 21—Still no sleep last night. My rash has blown up overnight. I feel like a science experiment or the Swamp Thing. Can I pop the rash? Nope. Can I extract a hair? Nope. Is it discoid lupus lesions? Not exactly. This is an unbearable combination of pain and itchiness. Can’t walk. Can’t sit. NO RELIEF!
- October 22—I can’t take it anymore. The rash sort of looks like discoid lupus. Emailed rheumy for advice—“should I start prednisone?” “No,” he says, “call your Ob-Gyn.” Realize my rheumy thinks I have herpes. Totally embarrassed. It can’t be herpes! Called the Ob-Gyn and she says to come see her in an hour. Note: Prednisone can make an infection worse, so be careful about self-medicating with steroids!
- October 22 (Afternoon)—Drive to Ob-Gyn. I’m sweating from the exertion of driving. I can barely get out of the car. My god, that was nearly impossible. Hobbled into her office. They look at me with sympathy. Luckily, no one else is in the waiting room to laugh at my walk. My Ob-Gyn displays a disconcerting mix of fascination and confusion about my rash. She briefly mentions shingles and dismisses it. (I mumble some words well known to arthritis sufferers. “Shingles? Don’t old people get that?”) She suggests herpes, but thinks it looks like lupus. I look up at the cottage cheese ceiling for help: Dear God, why can’t I get an answer? She gives me Valtrex, an anti-viral and cultures the lesions. Excuse me, I mean she scrapes and digs at the lesions. I clench my jaw and see stars. Then I remember I have to get back in the car and drive home. I consider spending the night at the Ob-Gyn’s office. Note: Shingles typically presents as a rash on one side of your body, corresponding to where the zoster virus lies dormant in your body. Shingles occurs along a dermatome, an area where spinal cord nerves connect with the skin.
- October 23—Rash stops spreading. I’m still in horrible, agonizing pain. Still can’t sit. Still can’t walk. Can’t scratch the itch. Looked online for clues that it might be shingles. My rash looks like the photos. I have shingles!? No, correction, I have shingles in my lady parts!
- October 24—I am an insane person. I haven’t slept. I’m in agony. I’m constantly sitting on ice packs. And I’m still working full time! I think my head needs to be examined. My boyfriend hears the sounds of a lion giving birth in the wild—he realizes it’s me, not a Bear Grylls show. He paces the living room, not sure what to do with me. “Emergency room?” he wonders…I shake my head. I hate the ER. And I’m too delirious to realize that I need serious pain medications.
- October 26—Scabbing has started in some areas. This is a good sign. Ob-Gyn calls. “It’s not herpes.” I already knew that, lady.
- October 29—Back to Ob-Gyn. She didn’t test for shingles! WTF. Have to get lesions cultured again. She calls in another Ob-Gyn to look. They stare. I feel a fire between my legs and they just stare. Aren’t you supposed to put fires out?! Ob-Gyn still thinks it’s lupus. I insist it could be shingles. She increases my dose of Valtrex, “just in case.” Note: The rash responded to my low dose of Valtrex; however, it would have responded faster had I been on the higher dose of Valtrex typically prescribed for shingles.
- October 30—Sores are still scabbing over, which is good. But they are insanely itchy. A few fall off—a very good sign. I took three oatmeal baths today.
- October 31—No Halloween for me. Watched scary movies at home. Realized this shingles rash is the scariest thing I’ve ever seen. It’s right up there with my gangrenous hand of 2007. Pat myself on the back for a very authentic Halloween transformation.
- November 8—I think this might never end. I might have shingles for the rest of my life. I need sympathy and consider sharing the fiery depths of my pain on Facebook, but decide that really is TMI*. Good decision. At least my common sense is returning.
- November 8 (Afternoon)—Ob-Gyn calls. “The zoster test was negative. You don’t have shingles.” Call my super-Dad (an infectious diseases specialist)—he says that’s not uncommon. The test can be negative if you miss the window for an active culture. He reassures me that it will keep getting better and to hang in there. I think about getting a new Ob-Gyn.
So now, dear friends, you know what it was like to have a very unfortunate case of shingles. So what were the signs? In summary:
- Pre-existing inflammatory disease
- Had chicken pox as a child
- Symptoms on one side of the body: swollen, painful lymph nodes on right side, severe muscle pain on right side, intense pain and itchy rash on right side
- Rash responded to Valtrex, but because of Valtrex, the zoster test was negative
May you never know this exquisite pain, but since you are at risk, now is the time to arm yourself with more knowledge than I had and talk to your doctor about your risk.
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*I am well aware that this will now be shared on Facebook—I swallow my pride and do so for the greater good of your health!