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In his own words: living with shingles
As told to Mary Calvagna, MS
At 81, James is savoring the retired life. He lives in California where he spends his time being a grandfather, surfing the net, and enjoying the beautiful weather. He has been living with shingles, and its complication post-herpetic neuralgia, for more than 20 years. Although it can be quite painful, he doesn't let it slow him down.
What was your first sign that something was wrong? What symptoms did you experience?
It started in the skin above my right eyebrow. At first, it felt very itchy. Then it progressed into a burning or tingling sensation. After about a day or two, it developed into a rash. It itched like wild fury! The rash began in my right eyebrow (which is a very unusual place for shingles) and extended up my forehead and over the top of my head. It was really very painful. And, it didn't look too good either!
What was the diagnosis experience like?
Well, the rash was not going away. And I think my wife got tired of my complaining, so she drove me to the doctor's office herself. The doctor took one look and said, "Shingles!" and sent me to an ophthalmologist to make sure the eye wasn't affected. Luckily, it wasn't. The doctor prescribed some medication and sent me on my way.
What was your initial and then longer-term reaction to the diagnosis?
At first, I was very frustrated and angry. You cannot cure shingles-it is caused by a virus that lives in your body. I thought, "I can't believe I am going to have to deal with this for the rest of my life." But over time I have gotten used to it - one learns to cope.
At times though, it has been tough, because I developed post-herpetic neuralgia, which is a complication of shingles. This means that even when I am not having an outbreak in an area, I can still feel the pain and itching. Sometimes it can be quiet severe, and it lasts for varying lengths of time, from a few minutes to several hours. But in the grand scheme, there are people who are suffering from things a lot worse than this.
How is shingles treated?
As I said, you can't cure shingles. Treatment just tries to help you through an outbreak. The doctor prescribed acyclovir, which is a virus fighter that is taken by mouth. Unfortunately, it works best when you take it before any symptoms appear. I'm not always that in tune, especially because areas will hurt and itch with no ensuing outbreak. To help with the itch, I try anything that can help relieve the itching-something like calamine lotion.
Did you have to make any lifestyle or dietary changes in response to shingles?
No, not really. I haven't changed my diet at all. But I have tried to find more hobbies and things to do with my time to get my mind off of it. If the pain recurs during waking hours, I just try to do something to occupy my mind. If I can distract myself enough, the pain will usually go away without medication. If the pain wakes me up at night, I usually take something for it and try to go back to sleep.
Did you seek any type of emotional support?
Well, to deal with the pain at first, I probably drank more than I should have. And I got very little pity from family and friends for my suffering. It's hard for people to understand that a rash can cause so much pain—especially when it is not there!
Does shingles have any impact on your family?
Not any more. At first, I was a bear from the pain. But now that I have gotten used to it and know what to expect, I think I am very easy to live with.
What advice would you give to anyone living with shingles?
You just have to learn to cope. Shingles is not going away. So the best thing to do is learn how to deal with an outbreak. Stress can really bring on an outbreak, so try to avoid it. Retire, if you can. That helped me.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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