Community Shares: My Shingles Surprise

Recently, members of our community discussed shingles. Shingles symptoms are uncomfortable, and they can be more severe when combined with autoimmune diseases. It is always an unwelcome surprise when shingles erupt.¹

A few common themes emerged from the comments. You might find hearing about other people's experiences with shingles affirming.

Postherpetic neuralgia, or lingering nerve damage

A common complaint was nerve damage after shingles, also called postherpetic neuralgia (PHN). Many community members shared experiences with lingering nerve damage and pain.

“I had shingles a year ago. To date, I have nerve problems with my wrist, hand, and hip.”

“I had shingles almost 2 years ago. I am still on medication for nerve damage. Without it, I feel an intense internal itching.”

“My shingles lasted 14 months. I have permanent nerve damage.”

“Had it on one arm, damage now to my radial nerve.”

Ongoing pain

Along with nerve damage, other pain also may be ongoing. Many experience pain flares where the shingles rash occurred. The ribs and areas on the scalp, face, and back remain extremely sensitive.

“Had it on the left side of my nose, up my left nostril, across my cheekbone, upper and lower eyelid, and it was headed toward my ear. That was over 20 years ago, and I still have pain off and on.”

“I still have bad pain in my ribs, and half my back has no feeling, but when the pain comes, then it burns.”

“The worst pain ever, and it lasted long after the blisters healed. I still can’t take a hot shower.”

Clothing struggles

Lingering pain in the body and joints creates some unique challenges. Several members described being unable to have anything touch the shingles flare site. It is now impossible to wear certain clothing items. Bras, long sleeves, and hats cause too much pain.

“I had shingles on the right side of my breast and underarm about 4 years ago. I have developed what feels like severe sunburn pain to the point I cannot wear a bra.”

“I had shingles 5 years ago on my left arm. I have had problems ever since. The pain is so bad that I can’t wear anything with long sleeves.”

“Shingles in 2014 under my left breast and arm. Still have major discomfort in these spots. Can’t find a comfortable bra!”

“I had shingles on the top and left side of my head in 2009. Prior to that, I wore a hat most of the time, but I can’t wear one at all now.”

Stories of prevention

Many people shared that they are now vaccinated against shingles. In some cases, doctors advised that they get vaccinated for shingles before receiving certain types of treatments. Seeing loved ones endure shingles pushed others to get vaccinated. You may still get shingles with the vaccine, but symptoms are usually milder.^2-4

“After watching the pain and misery that my mother had with several outbreaks, my mother-in-law, my husband, our son, and I all got the 2-shot shingles vaccine.”

“I had to get the shingles and pneumonia vaccines a couple of months ago so that I could start [my biologic].”

“I had both shingles vaccines and still had shingles. Milder, but still hard.”

Thank you

We appreciate everyone who contributed to these conversations. Thank you for sparking a discussion on an important topic!