A Day in the Life of Shingles

Here I am, four years after shingles and the start of this blog, going through a second outbreak of this insidious disease. The doctor isn't 100% certain it's shingles, saying that without the rash the diagnosis is largely a process of elimination. However, I am 100% certain. I remember all the tell-tale signs, in particular the fact that shingles pain is so much worse at night.

I'm still in week one of round two, and here's what a typical day looks like.

  • 6:30 p.m. Bedtime. I know if I go to sleep now, I should be able to get about 4 hours of sleep before the pain nudges me awake.
  • 10:30 p.m. Pain. Awake. I take a hot shower, staying in as long as the hot water holds out. The needles of water offset the needles of pain and the relaxation will buy me a couple of hours of functioning time. I do my hair, knowing that I won't care or be able to do much with it in the morning--the pain will be too bad.
  • 12:30 a.m. I fix something nutritious to eat. Avocado toast with poached egg and arugula. I also take several lysine and a complex B-vitamin. My hope is that the lysine will help suppress the shingles virus and the B-vitamins will help protect against nerve damage.
  • 1:30 a.m. The waiting game. During my first bout with shingles, I discovered that Lidoderm* (lidocaine patches) work pretty well to lessen the pain of shingles. Unfortunately, lidocaine takes a long time to process out of your system so it's a 12-hour on / 12-hour off patching schedule. I can't apply another Lidoderm (lidocaine patch) until 3:30 a.m. To get enough relief to sleep again, I also need to hold off on any pain meds until then. Basically, the next two hours are white-knuckling it. I pace, make some tea. Take another hot shower and try not to get my hair wet. I manage to sleep for almost an hour and a half. 
  • 3:30 a.m. Pain. Awake. Fortunately, I can finally apply the Lidoderm. I start with one, hoping that will do the trick, and add other until I get some relief. It's a three-patcher. 
  • 4:00 a.m. Pain pill. 
  • 4:30 a.m. Coffee. Full strength. Caffeine seems to help the pain pill work a little better. I'm not sensitive to caffeine; I can drink it at night and still sleep fine.
  • 5:00 a.m. The patches, pain pill, and caffeine are kicking in. It's like someone turned down the volume on the pain. It's still there, but not as demanding as it was. I try watching a documentary hoping to doze off.
  • 7:00 a.m. I didn't get any real sleep but did manage to doze off a couple of times. Time to get ready for work.
  • 9:00 a.m. Work. 
  • 3:30 p.m. Lidoderm (lidocaine patches) have to come off. This is a tense moment because I can't apply them again for 12 hours. I'm nicknaming it the long mile.
  • 5:30 p.m. Home from work. Feed dog. Get ready for bed so I can wash, rinse, repeat.

*A note on Lidoderm (lidocaine patches)
If your insurance will cover it, ask your doctor to specify the real Lidoderm patches (the original from Endo Labs). Generic lidocaine patches are crap. To be effective, lidocaine patches have to make full contact with your skin surface. The generic brand--looking at you Mylan--use what they call a "polyisobutylene adhesive matrix". It is thin and flimsy making it hard to place. Once placed, it doesn't stick well, peels up and gets wrinkles so it's not making full skin contact. And for folks like me, the material they use also causes welts and allergic reactions.