What you need to know about this common neurological disorder
Hanna McRostie noticed a rash on her back in September 2017. She was especially worried because she was having severe headaches that lasted day and night. When she also developed swollen lymph glands in her groin, she went to see her doctor.
“When he saw my rash, he knew right away that I had shingles,” says McRostie, a Yorkville resident.
McRostie was 41 years old when she was diagnosed with shingles, which makes her case unusual. According to the Centers for Disease Control and Prevention (CDC), the risk of getting shingles increases with age and is most common in people 60 and older.
Extreme nerve pain
Scott Love, MD, a family medicine physician with DuPage Medical Group, says that shingles can be difficult to diagnose because it can begin with headaches, swelling of the lymph nodes or other symptoms before the telltale rash appears. Then comes severe nerve pain that can be extremely agonizing and feel like a constant ache, electric shocks or a sensation of burning or itching.
Shingles is caused by the varicella zoster virus (VZV) — the same one that causes chicken pox. “It lives dormant in the body [of people who have had chicken pox], often for 30 to 40 years, because our immune cells produce antibodies that keep it at bay,” says Love, who treated McRostie. “But immune cells decrease in strength as we age.” Illness or stress can also weaken immune cells, he adds, allowing the virus to be reactivated.
The best treatment for shingles is an anti-viral drug, such as acyclovir or valacyclovir, Love says. To be most effective in reducing the severity of the pain and the length of the healing process, it is ideally taken within 72 hours after the rash appears. Gabapentin (Neurontin), pregabalin (Lyrica) and stronger drugs, if necessary, can be used to reduce the pain, which can range from mild to intense.
The shingles rash, which may cause itching, turns to blisters that form a crust that eventually falls off. The rash usually appears on the torso on one side of the body.
McRostie’s rash was a cluster of small red dots on the left side of her back at the waistline. “Some people feel pins and needles, but my rash wasn’t very painful,” McRostie says. “But it itched like crazy for about two weeks.”
A neurological disorder
Because the rash is the key visual symptom of shingles, many people think that it is a skin disease when, in fact, it is a neurological disorder.
“The virus that causes shingles hides out in the dorsal root ganglion of the nervous system next to the spinal cord, or in the cranial nerve nuclei of the brain that hold parts of the nerve cells that are in charge of sensation,” says Anna Sorokin, MD, a neurologist with the Elmhurst Neurosciences Institute at Edward-Elmhurst Health.
“That is the key to understanding one of the biggest complications of shingles, neuralgia, which is the pain that comes from the inflammation of the nerves. The virus begins to replicate in the ganglion and then travels down the nerves to the surface of the skin. Short- and long-term pain caused by shingles comes from the inflammation of the affected nerves due to the widespread growth of the virus in those areas.”
Even after treatment, the pain of shingles can persist for up to four months because the nerves take a long time to heal. “We can’t speed up the healing,” Sorokin says. “We can only treat the symptoms.”
In rare cases, the rash appears on the face and can affect the eye, potentially causing numerous complications including loss of vision. A rash near or in the ear can result in vertigo or loss of hearing. Some people who have shingles develop postherpetic neuralgia — pain that can last for months or years after the rash has disappeared.
Effective new vaccine
More than 99 percent of Americans over age 40 have had chicken pox, according to the CDC, and are therefore at risk for shingles, so prevention is important. Up until recently, Zostavax was the only vaccine for shingles. But in October 2017, the Food and Drug Administration approved Shingrix, which includes an ingredient that boosts the immune system and is more effective at providing longer-lasting protection.
The CDC says that Shingrix is now the preferred vaccine instead of Zostavax.
It recommends that healthy adults 50 and older get two doses of Shingrix two to six months apart. You should get the Shingrix vaccine even if you previously received Zostavax, the CDC says.
Even those who have already had shingles should talk to their doctor about getting vaccinated, because, unlike chicken pox, shingles can reoccur. McRostie’s case underscores that fact. She had chicken poxas an infant and developed shingles when she was 9 years old and again at age 41.
No one wants to endure the pain of shingles. Adults over 50 should check with their healthcare provider or pharmacist about the Shingrix vaccine so they can take the appropriate steps to avoid developing this painful neurological disorder.
Www.talkhelper.com June 15, 2018 at 7:03 am
Thanks for the great guide
Elizabeth Matthews September 5, 2018 at 8:33 pm
The symptoms Hanna experienced are exactly what I am experiencing. As I am writing this comment The rash in the center of my back is itching so bad I can barely stand it.. Ok I’m back; I had to scratch it. I don’t know how in the world this happened to me @ 48! My case is mild, I have 2 different locations on my body, my back and my underarm/ breast area. Not a lot of pain, mainly severe itching.
Joy Higdon October 23, 2018 at 12:01 am
I have been diagnosed with shingles and am taking medication for them. I have had little pain, no blisters, but h horrible rash. They are on my lower leg and the swelling is horrible. It is so swollen that it looks like it will burst. None of the symptoms I have read says anything about swelling but they list blisters with shingles. Could it be misdiagnosed? Thanks
Amber November 8, 2018 at 7:55 pm
This is the best article I have read so far on shingles. At 39, I am “enjoying” my first case of shingles. Like many, I had the misconception that this only affected the elderly.
Thank you for explaining this condition so well!!
Renae Conner-Ward November 20, 2018 at 3:28 pm
I jave shingles on the underside of my left arm and left side of my breast. Luckily I “guesstimated” and knew I had shingles before I saw my doctor so I started administering calamine lotion immediately as to stave off the rash spreading. I am currently on medication bit the pain INSIDE my left arm and armpit is unbearable! My Dr said the pain is caused by the nerves and the swelling of the lymph nodes. Any siggestions?
Nichole December 21, 2018 at 1:37 pm
I am dealing with Shingles for the 2nd time. I had them the first time when I was a young child. Now at 35, I have them again. This time they are on my face. While my bumps/blisters are/were small (I only had 3), I woke with the bumps and the pain. Went to dr the next day and he wasn’t even sure that I had shingles because it was so early to really tell. Started on meds right away, just Incase. Today is day 6, the bumps look great, and there is not much pain with them, blisters are all gone as well. But today, my eye lid and under eye are very swollen. No one talks about the swelling. Called dr. It is normal to have swelling in the area.
Melissa January 6, 2019 at 6:08 pm
I’m dealing with shingles for past 5 years with five out breaks. This year 2018 in October then 2019 January . This January was the worst pain ever in my left leg and left arm and body ache. So severe with the headache severe. So my out break is the size of my thumb on my left buttocks. It started when I was 38 years of age. I’m 43 now.
Paula April 19, 2019 at 11:07 am
Have you had the vaccine? This is my 2nd bout with shingles, also in the same area. My lymph nodes are very swollen and tender and pain severe. I have not had the vaccine but am considering.
Michele M Svoboda March 26, 2019 at 12:02 am
I have been dealing with an enlarged lymph node In my armpit for a while now. I was finally diagnosed with internal shingles under my arm when the burning was unbearable. I have been on Valtrex now for almost a week and the lymph node is not going down. Has anyone had the swollen lymph node for a long period of time?
midge mathews August 27, 2019 at 2:02 am
I guess I am experiencing the rare version. Left side of face and left ear and into the hairline. some blisters on the side of face and around the back of ear and now into the hairline. it itches some.. my biggest complaint is the headache. and the electric spasms from the pain. like an electrical shock. that and the swollen lymph glands in neck under ear. did take a course of anti viral meds.. they are gone now. hope it goes away soon. and fatigued.. but thats better now. just some itching and the pain.
Sarah May 26, 2020 at 2:29 pm
Yes! The swelling! This is one of the few accounts I’ve come across, and read in the comments, regarding swelling at the site of rash and the lymph nodes.
My rash is mild and is more annoying than anything. But there is a swelling with each blister and the whole right side of my face is swollen and lymph nodes are beyond tender from my temples to my collar bone.
Tom G March 18, 2021 at 9:45 pm
This was a very well-written thorough article. I am 53 and have had shingles since my 30’s. I know it’s rare for it to start so young. It occurs on a small area between my nose and eye. Had four outbreaks before doctors realized what I had. It causes neuralgia on the side of my head and jaw. It is most like also the root cause of a case of Bells Palsy I had on the same side several years ago. I take neurontin sometimes for pain. And took Valtrex during outbreaks. I was so happy to get the shingrix vaccine in 2018 and thought I would be rid of outbreaks for good. Here’s where things recently took a turn and brought me to this article. I took my first dose of Pfizer COVID-19 vaccine on Tuesday March 16 2021. Tuesday night I had night sweats. Wednesday I had arm pain which is to be expected. Wednesday night I noticed an outbreak of shingles had started. Today I started on neurontin and Valtrex again. I just noticed swollen tender lymph node under my jaw. I am having a full blown shingles attack despite being vaccinated for it in 2018. Apparently I am now one of the less than 10% of people who shingrix does not help. This makes me very sad. I am wondering if the COVID-19 vaccine triggered the shingles outbreak.