‘I’ve got constant pain 24/7’- Woman, 74, warns of ‘horrible’ chronic shingles symptoms
Shingles: Symptoms and effects of virus
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The NHS explains that the main symptom of shingles is a tingling or painful feeling in an area of skin. A few days after, an itchy rash will appear. Usually the shingles rash appears on the chest or tummy, but it can appear anywhere including the face, eyes and genitals. One person who has had first-hand experience of shingles and the lasting effects the condition can have, is 74-year-old Jan Fisher, who got shingles on her face, affecting one of her eyes and hair. Speaking exclusively to Express.co.uk, Jan detailed the chronic pain she suffers nearly everyday, and the “mind over matter” mindset she has developed in order to cope.
Recalling when she first noticed symptoms of shingles Jan explained: “Well, it’s really strange because we live in Norwich, and we were staying with our friends who live in Oxford, and we’ve been away for a weekend with them.
“It was the last day and we were heading back to their house and looking through some shops. I don’t know when it was, but I just had a pain in my head and it kept getting worse. Then when I looked I noticed one little tiny spot on it. I said to my husband William, ‘This is shingles’. How I knew, I don’t know.
“We drove straight home, but I was in horrible pain in my head. I just couldn’t bear it. And as it was a Sunday we went straight to a drop-in centre but from there on it just got worse. It was in my left eye and that front quarter of my head.”
When a shingles rash appears, blotches often become itchy blisters that ooze fluid. Skin can also become red and dry causing blisters to scab.
When shingles affect the eyes they may experience the following:
- Blistering on the upper eyelid, usually on only one side of the face
- Redness and swelling around the eyelids
- Itchiness and irritation of the eye
- Sensitivity to light
- Blurred vision.
“For a month I couldn’t open my eye,” Jan went on to explain. “It was just completely covered and the whole of my head was in pain.
“I was having Tramadol [a strong pain killer] and all the other stuff, but the pain wasn’t easing at all.”
After a month of dealing with excruciating pain, Jan explained that she, and her eye, started to feel a bit better. But eight years on from her diagnosis in 2014, she still deals with shingles-related pain.
“It’s called post-herpetic neuralgia. So in my left eye and that quarter of the head where I had shingles, I’ve still got constant pain 24/7,” Jan said.
“I’ve been on every single course of medication that they normally recommend. I was on Capsaicin [a common treatment which is made up of a high concentration of an extract from chilli peppers] for about five years but still had the pain and well you think you are taking all of this medication and it’s not doing any good, I have still got the pain. So I stopped taking it.”
The Mayo Clinic explains that post-herpetic neuralgia is the most common complication of shingles. It occurs when the nerve fibres are damaged during the outbreak of the infection, meaning messages from your skin to your brain cannot be sent as they normally do.
Instead, these messages become confused and exaggerated, causing chronic, often excruciating pain that can last months – or even years.
Admitting that she was an “extreme case” with only approximately one in six million individuals suffering with the long-term side effects from shingles, Jan has had to modify her whole mindset in order to cope.
She added: “It’s mind over matter really. I’m just so used to the times when it gets so bad and the rash comes back on the head. It is just like a kind of tingling feeling the whole time but more intense.
“Every so often you are sitting there and it’s like an electric shock goes through your head and you jump, then it calms itself down to a dull ache. It is like someone running a serrated edged pizza wheel across your head every couple of minutes.”
Jan went on to say that due to the rash in her hair, it makes everyday activities such as washing her hair, or putting anything on it “extremely painful”.
Remarkably, Jan has been able to deal with the chronic pain, but she finds some times are easier than others: “I like my clothes, I like my hair just so. I have to suffer in silence in order to style my hair. Sometimes it gets so bad I do feel sorry for myself. Getting yourself into a routine of mind over matter is important, but sometimes I do give into it and I feel sorry for myself.
“I have tried everything and it doesn’t work. But I am an exception, unfortunately. The thing that keeps me going is I think to myself ‘Well, if this is the worst thing I am going to be afflicted with in my life then I’ll take it’. I have friends who have got heart problems or cancer etc, so you just do what you can to sort of grin and bear it.”
Jan’s case of post-herpetic neuralgia is particularly bad. However, no treatment for the condition works for every individual. UK-based charity the Shingles Support Society, which supports people who are experiencing terrible pain as a result of shingles, explains some of the ways people may find relief.
Marian Nicholson, director of the charity told Express.co.uk: “As well as doctors giving you antiviral therapy for the actual outbreak, they can give you pills to control this out of control nerve. There are two or three different tablets that can be prescribed that will slowly build up a pain block. Amitriptyline and Gabapentin and other anti-epileptic drugs are two of the most commonly used.
“It is going to take a month before you notice much difference. But each day as you take those pills you are adding another little tiny sliver to the wall, creating a block to the pain. Self-help tips also include using tens machines and tight bandages around the area.”
As well as antidepressants such as amitriptyline and anticonvulsants like gabapentin and pregabalin, the NHS also recommends creams and plasters for post-herpetic neuralgia. It is also important to speak to your GP before taking any sort of medication due to the possible side effects that can occur with each one.
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