“Herpes zoster is a pain, in more ways than one.” – Dr. Anderson, Neurologist.
ON BIKE RIDES I often solve computer problems, straighten out plot twists for short stories, organize my arguments for editorials, and now and then stumble on a useful idea. Recently I had, to me, a marvelous revelation about a heretofore unremarked benefit of our amateur journalism hobby. What is the subject of greatest interest (other than grandchildren) to a person of the average age of the members of the National Amateur Press Association? His medical and health adventures, of course. This is exactly what everyone wants to talk about, but the rub is that no one seems to want to listen to your adventures. Instead, they want to talk about their own. But look what amateur publishing can do for you. You can publish the gory details to your heart’s content, and if the recipients of your publication do not read what you have written, you will never know the difference. It won’t be anything like having them edge away from you at a party or interrupting you to tell their own relatively uninteresting stories. Once this wonderful idea struck me, I could hardly wait to try it out by telling you of my adventures with shingles.
One day in the latter part of January, 1993, my granddaughter Alice was sitting in my lap operating my computer when I felt an uncomfortable itching on my leg. Examination showed a mildly red spot just above my knee. A day or so later I found three more such red spots, about the size of a quarter, distributed on my left leg from below my knee to mid-thigh and one at the base of my spine. I had still had no real discomfort although my left knee had been somewhat troublesome for several days, but the next day my knee started hurting with an aching pain like a toothache. Then the pain transferred from my knee to my left buttock with an increased intensity to the point of being nearly unbearable.
A trip to Dr. Rothenberg, the same doctor who saved my life five years ago with early discovery of colon cancer, resulted in a quick diagnosis of herpes zoster, shingles, on either lumbar nerve L1 or L2. These nerves come out near the base of the spine, go around the buttock, and down the inside of the leg to some place below the knee. The doctor said it was not worth-while to try to determine which lumbar nerve was affected since the treatment was the same in either case. He said that there was now a treatment for shingles – massive doses of Zovirax (an acyclovir) – which he said would clear up the now blistered red spots. My knee joint which felt as if it were coming to pieces was physically all right the doctor said. The nerve was simply giving a false report. The pain, he said, would probably go away in a week or so, but I might feel some effects from the shingles for several months.
I had heard of shingles all my life, but I knew nothing about it except that it usually produced a rash extending half way around the waist and was reputed to be very painful. Son David had it when still a child and has said that he still sometimes feels twinges from it. A friend who had it on his waist a couple of years ago spent a year or more with recurring pain and still feels it occasionally. Another friend was recently hospitalized from shingles on his face. Neuralgia (nerve pain) often persists for months or years according to several sources.
Normally the itching from the blistered rash is very severe, and there is danger of bacterial infection of the rash from scratching it. In my case the rash was never a source of much discomfort. It itched only slightly and healed over within a week.
In 1909 a Hungarian pediatrician, Janos Bokai, found that herpes zoster and chicken pox are caused by the same virus, and that people who had not had chicken pox could catch it from contact with the blisters on a shingles victim. It is now established that the first time one comes in contact with the virus, he takes chicken pox, and that the disease you can catch from contact with shingles blisters is chicken pox – not shingles. After chicken pox the virus (varicella zoster) settles around nerve ganglia in the spine where it bides its time until the victim’s immunity is lowered, usually simply due to age, and then appears as shingles on any nerve originating in the spine.
Until recently there was no treatment for the disease except time. According to The Washington Post, a vaccine against chicken pox, developed in Japan but not yet approved in the U.S., is being studied to see if it might be useful in preventing or ameliorating shingles.
Shingles attacks about 500,000 Americans each year, most of them over 35. The older one is the more likely he is to become a victim of shingles. No one knows why the virus is suddenly reactivated, but stress or anything that causes a deficiency in the immune system may be the trigger. The most common forms of the disease, although producing severe pain and a lot of discomfort, are not of any real danger to the victim. However there is danger to the child if the disease strikes a pregnant woman, and there is danger of permanent damage to the brain if shingles is on the scalp and to the ears and eyes if on the face and nose. Like chicken pox, shingles normally strikes a victim only once.
As said earlier, the nerve that goes halfway around the body from the spine at the waist is the usual place for shingles. (Zoster means girdle or belt in ancient Greek.) However shingles of the lumbar nerve is not rare.
After I had been living on codeine for two weeks the pain subsided. I began riding my bike again. A rainy period caused the total layoff to be more nearly a month so it required a couple of weeks to get into shape to ride my usual 30-mile distance. But all seemed well in mid-March except for a slight wobble of the left knee when I was standing on the pedals for a hard pull.
One day, at that time, my knee started hurting and a day or two later my butt began aching, and suddenly I had all the pain and maybe more than I had suffered earlier. A trip to the doctor revealed no sign of recurrence of the rash or of shingles, but his examination revealed substantial loss of strength in my left leg. My large thigh muscles were now sore, and all the muscles in my left leg seemed to have lost their tone and strength.
A tap with the rubber hammer below my left knee showed absolutely no resulting reflex. I could walk fairly well but had to be careful not to get my knee bent too far or my left knee would suddenly buckle and hit the floor when it had my weight on it. Stair climbing felt hazardous enough to make me sure to have the rail at hand. Any activity that required being on my feet for an hour or more became exceedingly tiring.
The doctor did several blood tests including one for the HIV virus. Later I read that the first manifestations of AIDS is often shingles. I hadn’t thought of it, but it is reasonable enough. Anyway that’s one virus I do not have. He referred me to a neurologist who performed every expensive test he could think of on me: magnetic resonance imaging, gamma-ray bone scan, etc. on the reasonable premise I might well have nerve trouble due to a slipped disk or other mechanical things in the spine or might have a tumor or whatnot.
Two or three weeks of such testing convinced him that my trouble was only the result of shingles. He said my condition was not typical of shingles but was by no means unheard of. In fact he said he had seen much worse results of shingles. His prediction was that within six months or so I could hope for nerve healing and most of my leg strength back. At that point, he knocked on wood. (Later it occurred to me that I had not asked when the six months started. I had been enthralled for about four already.)
I later read that herpes zoster can cause loss of muscle strength, and that this loss often occurs during a very short time, overnight or a day or two. Normally there is no recurrence of muscle loss. One source said 85% of the people who lose muscle strength due to shingles fully recover. (That sounds like pretty good odds until you think that it’s only about 5.5 to 1, and people make bets like that every day on horses.
Once when I had a bad-looking mole removed at a cancer clinic, the doctor said he would have it checked for malignancy but said, “Nine out of ten times, it’s nothing.” Evidently he was trying to be reassuring, but nine out of ten is only 9 to 1 odds, and that, too, is within horse-betting range. What I wanted him to say was that the odds were a million to one or, even better, billion or trillion.)
I am still quite baffled at how it can be that it takes weeks and months of exercising or bike riding to build up one’s leg muscles, and then virtually all that muscle tone and strength can disappear in a few hours, but doctors and therapists seem not to find this unusual. Indeed, I was told that such a thing can happen overnight as a result of surgery. The therapist said that many times one loses muscle bulk as well as muscle tone.
My left thigh has not decreased in size. The muscles in my left thigh that are affected are probably the vastus lateralis, vastus medalis, rectus femoris, and sartorius – all the big, long muscles. They stay sore all the time.
After all the testing and examining in April and May, my pain was diminishing, and most of my discomfort was only at night when my now minor aches and a butt that gradually gets sore as the day wears on prevented me from sleeping. My daughter, Helen, happened to be getting physical therapy for her shoulder, strained by 15 years of carrying a heavy mail bag, and she asked the therapist if she could help me. The therapist said she was not sure, but she thought physical therapy might be helpful. I called my doctor and asked him about it, and he said, “That’s a good idea.” He then sent me an order for physical therapy.
On my first visit in mid-May, the therapist was surprised at the marked difference in the strengths of my right and left legs. She put me through a series of exercises with a three-pound weight on my left ankle and gave me an exercise schedule for home use. At the end of the first week, she agreed I was worse off than when I started. I had gained no leg strength and was again having considerable pain at night. So we started over, this time with the same exercises but with reduced repetition for each and without the ankle weights. Also she suggested that I resume bike riding on a much reduced scale. At the end of the week (1 June), my leg muscles had made noticeable improvement. Two weeks later further progress is not as marked, and all the large muscles in my leg are still constantly sore. At best, it looks as if regaining my strength will be a long, slow, laborious process. Do not, however, make any bets against it.
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This went to press in June, 1993. All information in it, aside from direct experience or from doctors who have examined me, came from the following:
The Columbia University College of Physicians and Surgeons Complete Home Medical Guide, Crown Publishers, Inc., 1989.
Professional Guide to Diseases, Third Edition, Springhouse Corporation, Springhouse, PA, 1988.
Cecil Textbook of Medicine, 19th Edition, Edited by Wyngaarden, Smith, and Bennet; W. B. Saunders Company, Philadelphia, PA, 1988.
The Encyclopedia Americana, 1991.
The Washington Post, June 1, 1993.
The Merck Manual, 15th Edition, Merck Sharpe & Dohme Research Laboratories, Rahway, NJ, 1987.
Handset in Goudy’s Deepdene; display type is Contour #6. Edited and published by Jake Warner who printed the text on a Vandercook SP-15 and the cover on a 10×15 C&P.
The Boxwood Press
Greenbelt, MD 20770