Letters To NSF

The National Shingles Foundation has received hundreds of letters from individuals suffering from VZV infections, the majority of whom are experiencing severe post-herpetic neuralgia pain. The following are excerpts from a few of these letters:

"Today, I am a recluse!"
A woman wrote that, five years ago, she was an "active, happy woman, when shingles struck. Today, I'm a recluse!" She cannot stand clothes to touch her side and back where the nerves are destroyed. Her activities are restricted, "and the doctors say there is no cure." Nothing seems to relieve the constant discomfort. "So I am writing to urge you to continue working to help the coming generations avoid such misery."

"I wanted to float away and leave my burning left leg behind."
A 71-year-old man wrote that the pain of post-herpetic neuralgia was the most severe pain he had ever endured. "I wanted to float away and leave my burning left leg behind." The shooting pains, which he called "ice pick pains," continue, and he has experienced many other infections that he never had before developing shingles and PHN. "Do you have anything new nowadays that could give me a boost? I'm sick a lot."

"The fierce effect of PHN made recovery...a practically impossible goal."
A widower wrote that his 76-year old wife, who had been severely crippled by a "28-year siege" of rheumatoid arthritis, suffered "severe emotional trauma" when an apparently successfully-restored colostomy had to be repeated a few days later. Fifteen days later, she had a severe attack of shingles, followed by post-herpetic neuralgia. The spasms of PHN often left her immobilized during the last five years of her life, and the pain of PHN made it impossible for her to exercise to restore physical strength. Two weeks before she died, kidney function stopped, her lungs filled with fluid, producing pneumonia. "I am convinced, granted as a lay observer and her caregiver, that, except for the fierce effect of the PHN which made recovery of vitality a practically impossible goal, my wife would have lived longer to fight her always uncomplaining valiant battle against her burdens."

"Now my entire body is in pain."
A woman wrote that doctors had diagnosed her sister-in-law's case of ophthalmic shingles (shingles of the eye) as the worst case they had ever seen. The constant burning sensation is so unbearable that she cannot sleep or eat, and there appears to be no medication strong enough to relieve her discomfort. She also has cancer of the bone, which was in remission, until she developed shingles. "Now my entire body is in pain."

"The pain just takes hold..."
An elderly woman wrote that her pain is unbearable and comes on unexpectably. "I've learned to avoid sun, cold, wind, air conditioning, fatigue, hunger, etc. I'm unable to focus my eyes on reading, sewing, anything close up, although my vision is excellent. Good sight, but can't use it. The pain just takes hold and won't go away unless I lie down...with a heating pad at the back of my head. It is difficult to type, but I felt I had to share how I find some relief and comfort with other (PHN) sufferers."