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.

4 comments:

  1. Around the first of October I began to develop sharp pains around the occipital bone. I also had neck pain. My primary care recommended physical therapy. It was having little effect and I went to a chiropractor. On my second visit he said he knew what caused the nerve pain. I had shingles. Two or three tiny bumps had appeared, around the 20th. I promptly went to urgent care and the doctor confirmed that it looked like shingles and prescribed the retroviral. My doctor and I had tried everything from percocet and valium to gabapentin.

    Your description matches my experience. I am up almost constantly at night and may shower two or three times. I sleep during the day in maybe two or three one to two hour sessions. At best I can only occasionally doze at night.

    The chiropractor thinks I'm at the tail end. I had the shingles shot in mid September, and still got shingles. There is little rash, but the the rash is not located near the source of the pain. The rash is just below my neck on one side of my spine, but the pain is located around my left ear. When the pain hits it is like someone has hit me on the side of my head with a hammer.

    I am not sure night is the problem. Night is the problem because I am not moving about. During the day, physical activity seems to keep the pain at bay.

    I appreciate what you have written and posted. It is much clearer than most, even from reputable medical web sites.

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  2. Your experience reminds me so much of my own. I also had a rash that was not at the site of the pain. If you opt for the lidocaine patches (which I found to be extremely helpful), they should be placed over the site of the pain -- not over the location of the rash.

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  3. This is just like one of your other posters. Thought I had diverticulitis. Doctor put me on cipro and flagyl and I thought I was having hives from it. Then the rash started coming out. I'm in moderate pain, no sleep, about to have the stuff cultured in the morning. I think I'm too late for anti-virals now, BUT I think H1 and H2 blockers and Singulair, plus prednisone may be holding things down. It is getting worse, but so far bearable. My bowels, though, were already strange. Half constipated and major pain in lower left quadrant. I think I'm a believer in H1 and H2 blockers which also help with Covid, by the way. Very nice and informative blog! How did you find out about the bowel and bladder thing?

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    Replies
    1. Good question! Although it's somewhat rare (<10% of shingles cases), there's a decent amount of medical literature on the phenomenon. However, the studies all use the technical term "herpes zoster" instead of shingles so you would need to adjust your searches accordingly. For a jumping off point, try searching 'neurogenic bowel herpes zoster' as an example. I just want to note that the "rare" stat might be misleading since it will only have a chance to affect someone whose shingles has manifested in the applicable nerve cluster. There are no studies for that, but I imagine the % becomes considerably higher (if not downright common) when some portion of the spinal system is targeted, particularly the lower lumbar region. Hope this helps! Let us know how your tests go and how your shingles progresses!

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