‘A red dot was first sign of illness that caused pain for 13 years’

When Jan Fisher developed a headache during a day out with friends, she had no idea it was the first sign of an infection that would still cause her daily agony 13 years later. The 79-year-old had shingles, a condition caused by a reactivation of the chickenpox virus. It caused lasting neurological damage which means pain can strike at any moment.

Sometimes — particularly in the evening — it’s an annoying, constant ache. At other times it becomes a sharp, stabbing pain that runs in a line from Jan’s scalp to her eye. She explains: “It’s just like someone having a pizza wheel and bringing it across your head. It comes on just like an involuntary jump all of a sudden. It’s gone in a couple of seconds, but the pain is horrific.”

Around one in five people with shingles develop some lasting pain, known as post-herpetic neuralgia. It usually gets better gradually; Jan’s case is highly unusual.

One hospital neurologist told her there were only around 20 people in the world suffering from such severe nerve damage after the illness.

Jan says: “At first, when I got it, I just thought, ‘This is going to be painful for a few days, I’ve got a rash’. I never thought past that. I never thought that I would end up the way I did. But I am the exception.”

Around 50,000 people are diagnosed with shingles every year in England and Wales, resulting in around 50 deaths.

Symptoms typically include a tingling, burning or painful feeling on an area of skin, a headache and generally feeling unwell, and a rash that follows a few days later, often on the chest or abdomen.

It can take up to four weeks for the shingles rash to heal completely and debilitating effects can last for months.

Jan, who lives in Norwich with her husband William, was diagnosed after returning home from her trip to Oxford and going to a drop-in medical centre.

She remembers spotting the first visible sign: “I pulled the mirror down in the car and I could just see a very, very small red dot on my forehead. I don’t know what made me think this because I’d never had symptoms before, I’d never had shingles, but I thought, ‘Oh gosh, this is shingles’.”

Over the following days, a rash spread across the front left quartile of her head. Jan says: “It was just dreadful, I was in bed for at least two weeks with it. I had an extreme case. I couldn’t open my eye for about a week.

“I lost over half a stone in weight within the first week, going down to six-and-a-half stone. After about a month, I was able to get up and function a little bit, go to the shop etc. But it took a long, long while to get over it.”

Jan has tried several combinations of drugs including gabapentin, tramadol and amitriptyline but found that while the medication dulled the pain, “it dulled me as well”. She no longer takes regular doses and only uses co-codamol when the pain is particularly bad.

Anyone who has had chickenpox is at risk of shingles, known medically as herpes zoster. The risk of reactivation and more severe symptoms increases with age as natural immunity wanes.

Shingles sometimes strikes when the immune system is particularly vulnerable, such as after a bout of flu, during chemotherapy treatment or in a period of high stress.

You cannot catch shingles from another person, but someone with shingles can spread chickenpox to those who have not had it before.

The NHS began rolling out a two-dose shingles vaccine in late 2023 which is said to be over 90% effective at preventing shingles and post-herpetic neuralgia in adults 50 years and older with healthy immune systems.

A 2024 study of 200,000 people by Oxford University researchers also found the vaccine, called Shingrix, appeared to reduce the risk of dementia by 17%.

But recent data published by the UK Health Security Agency (UKHSA) showed fewer than half of newly eligible adults were taking up the free jab offer.

Dr Julie Yates, the UKHSA’s deputy director for immunisation programmes, said: “We understand people are busy, and it can be easy to put things off, but this is a vaccine that can make a real difference to your quality of life. If you are eligible and contacted by your GP, please don’t put it off — make that appointment.”

A study by the University of Bristol last year found that many people who were diagnosed with shingles had a limited understanding of the illness and were unprepared for the symptoms they experienced.

Lead author Dr Sophie Rees, whose team interviewed 29 patients aged 50 to 89, says many sufferers “felt unprepared for how painful it was, and how much it would affect them”.

“There were gaps in their knowledge, such as how shingles can happen at any age (although it is most common >50 years), and that the vaccine doesn’t provide one hundred percent protection from it.

“People also felt that having shingles made them come to think of themselves as ageing, in ways they hadn’t done so before.”

Previous research has also found that shingles is sometimes perceived as an illness caused by stress or poor mental health, leading to feelings of blame. Dr Rees adds: “[Some participants] felt they had let life get on top of them and it was a sign they needed to take better care of themselves.

“And because there is stigma associated with mental illness, especially amongst men, sometimes people felt embarrassed or isolated, and they didn’t want to share their experience with others.

Healthcare professionals should avoid reinforcing the idea that shingles is caused by ‘feeling down’ and should make sure people with shingles understand it is not their fault.”

Jan was 66 at the time of her diagnosis and says she felt “immortal” — recently retired and thriving. Although she has learned to cope with the pain, it takes a daily toll.

She says: “This is going to sound dramatic, but it has ruined my life in a way. It’s mainly at night when it comes on, when I get a heavy, heavy episode. I’ve also now got dermatitis on the scalp, just where the nerve endings have been affected.

“It does spoil life. Someone invites you out for supper and you think, ‘Oh gosh, I hope I can stay aware for the whole of the time’. Sometimes it gets so bad, the eye closes and you just can’t bear it, you can’t participate in the conversation or whatever.

“I love going to the theatre, going to the cinema, eating out. Sometimes, I think, ‘I hope I’ll be alright tonight’. I’m often wondering whether, as the night wears on, I will be able to socialise in quite the same way that I used to.”

On the topic of the vaccine, Jan adds: “Get it. For goodness sake, don’t run the risk of ending up like me, because I never thought I would get it this bad — never, ever in a million years.

“Even to have it just for a month, is not very pleasant at all. Just get vaccinated. It’s there, take advantage of it.”

Jan has worked with the Shingles Support Society to help raise awareness of the condition. The society’s director, Marian Nicholson, said: “Jan did have a bad case, but everyone will find shingles very unpleasant.

“The older you are, the more likely it is that shingles will cause this long-term pain, so that one in five people over the age of 60 has long term pain and one in three of the over 80-year-olds. The Shingles Support Society has advice on self-help and medical treatment for the pain — but our best advice is that everyone who can should get the vaccine.”