Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

shingles

Side Effects

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Last Tuesday afternoon, I got my second shingles vaccination. My first Shingrix shot, back in February, gave me a sore arm with a rash that lasted more than a week. But it was otherwise unremarkable. This time, however, was different.

By bedtime, my arm was achy, per usual after a vaccination. But I had trouble sleeping, waking several times with sore joints and unable to find a comfortable position. In the morning, I was so cold that my teeth were chattering. Very strange sensation. Could not stop until I managed to warm up under sweaters and blankets. For the rest of the day, I was draggy and achy, felt faint a few times, and basically had to lie down a lot. Over-the-counter pain meds helped somewhat. By Thursday I began to perk up, though by afternoon, I started to fade again. It wasn’t until Friday that I felt more like myself.

Annoying as this was (I haven’t felt that crummy in a long time), it was certainly better than getting shingles. I actually had shingles once, a few years ago, but was fortunate enough to ask my PCP about what I thought was a spider bite at a routine check-up. He recognized it as shingles and put me on a week’s course of antiviral medication, which worked very well. I never experienced the debilitating nerve pain from the virus, thank goodness, but I know others who have, and it is no picnic.

Because I’d had shingles, however, I had a long conversation with my Boston Medical rheumatologist about whether the data about the vaccine’s effectiveness actually applied to me, since the research was based only on people who had never had shingles. At that time, he agreed that it was unnecessary. But the vaccine and research have evolved since then, and now my team of docs all recommended getting vaccinated.

I write this not to discourage anyone from getting vaccinated for shingles—just to alert you that the second dose can pack a wallop. Even the pharmacist told me before I received my shot that I might experience “flu-like” symptoms. So give yourself downtime after the shot, in case you have a reaction. And be sure to discuss with your medical team whether a shingles vaccination is appropriate for your personal health needs and any side effects that should be weighed against benefits for your particular situation.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Gratisography

Odd Things

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I thought it was a spider bite. A week ago Saturday, I had taken a leisurely afternoon nap on our couch, and when I took a shower later that evening, I noticed an odd red patch on the right side of my waist, with a few random bumps in the middle. I hadn’t felt anything while asleep, but it was the only explanation I could think of. It was mildly itchy, so I dabbed on some benadryl ointment.

There were other odd things going on with my body, too. The Wednesday before the mystery rash appeared, I had woken up feeling dopey. Couldn’t explain it, other than, perhaps, just not enough sleep. I went to my Pilates reformer class that morning, and after a series of tiring leg exercises, was unable to step up onto the reformer platform for the next set. In fact, I lost my balance and fell, to my instructor’s dismay. I was okay, just a little bruised. I expected a sore back, and sure enough, got one—especially on the right side.

Then there was a dull ache in my right abdomen that began around that Wednesday and did not resolve. I always have a base level of aches and pains, and plenty of rumblings in my gut, but this wasn’t shifting location. By last Monday evening, I was starting to worry. Al convinced me to get some answers, so I called my internist the next morning and got an appointment for Wednesday, a week after all the weirdness had started. When I spoke to the nurse to describe my symptoms, all I could tell her was that it felt as if something was torn on the underside of the skin that covered my belly.

I’ve known my internist for almost four decades. He is compassionate and a good listener. The exam room was freezing, and he apologized and let me skip changing into a johnny for the exam. As he pressed here and there on my abdomen (nothing really hurt), he noticed another pink patch with little bumps. “It could be shingles,” he said. The rash was in position along a dermatome, which is a band of skin above nerves that radiate from your spine to your front—a defining trait of the virus, which locates on one side of the torso.

What??? Shingles? I never had the vaccine, because the original version was not particularly effective, and I was leery of the new one, despite reports of better outcomes. I certainly did have chicken pox as a kid. I have vague memories of lying in my mom’s bed, watching black-and-white cartoons or game shows, covered with scabs. Both my daughters had horrible cases when they were young, and I never reacted. Of course, I was only in my thirties then, and shingles is most likely to attack adults over 50 who carry the Varicella-zoster virus. No one knows the cause, according to my doctor. There have been plenty of theories, but nothing proven.

In any case, my doctor gave me a prescription for an antiviral medication to ease the rash and other symptoms. These are long white pills, and you have to take five a day. I was still skeptical, but decided to go ahead and give them a try. What did I really have to lose, other than annoying side effects?

Good thing, too, because by evening, I found a huge patch on the right side of my back. I felt totally off after taking three of the pills, but by the next day, I was doing a bit better. Especially because I had no more new patches. As of Monday evening, when I am writing, the rash has continued to recede, and I have very gratefully avoided the worst symptoms (so far) of extreme nerve pain. No weeping sores, no scabs. So I’m not contagious, either, thank goodness. There’s been one fleeting sensation of needles and pins at the site of the abdomenal patch, but nothing since. That weird sensation in my abdomen seems to have eased up. Perhaps it was a sign of the nerve being attacked by the virus. The medication is supposed to be most effective when the virus is caught early, and I think I have lucked out (fingers crossed).

Chances of contracting this again are slim, but I need to do more research about the vaccine, to decide if it is worth it when I’m healed. I’ve read and heard varying opinions. The vaccine does not eliminate your chance of getting shingles; it only reduces the odds.

In any case, I also discovered that the first sign of shingles is often mistaken for a spider bite. If there is a next time, and I certainly hope there isn’t, I will know better.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image Credit: Pietro Jeng