When I was two years of age, my family took me on a vacation to the Isle of Wight in the UK (around 1954). Two days later, I was diagnosed with chickenpox, and we had to return home. No doubt everyone involved was disappointed at the loss of a great family break, but we had no idea what this illness would lead to. Boy, did they ever get their revenge!

Fast forward to 2015 and shingles

I now live in Spain and while under stress over health problems relating to my elderly parents in the UK, I fell prey to shingles. Shingle is a painful condition that features a rash that can appear on any part of the body.

In my case, it spread over my left shoulder blade. Shingle is caused by the herpes virus that causes chickenpox in the first place and resides quietly in your system until it decides to hit.

Anti-virals are the order of the day, along with an ointment, and it takes some time for this painful condition to clear. Shingles result from the initial case of chickenpox, and while not everyone will suffer from the painful condition, many unfortunately do.

However, this isn’t always the end of the story, as there was another treat in store.

64 years after my initial chickenpox case, Postherpetic Neuralgia (PHN) reared its ugly head.

Postherpetic Neuralgia and chronic nerve pain

Bear in mind that, generally speaking, my health has been good throughout my life – even the annual flu rarely affects me for more than a couple of days. The fact that PHN has appeared and totally changed my life is still hard for me to grasp and understand after almost two years.

PHN involves incredible pain in the nerves damaged by shingles but often spreads elsewhere in the body. Initially, my pain was confined to the area in which the shingles rash was located. This was a stabbing pain, combined with itching and stinging sensations. I managed the pain naturally with a couple of puffs of marijuana twice a day and a hot water bottle for localized relief.

However, my left buttock gradually became numb and my feet started experiencing “pins and needles” and partial numbness. Since then the problem with my buttock has lead to numerous problems, including an almost constant, agonizing and stabbing pain in my groin and the inability to sit comfortably.

In surrounding areas, it appears to have paralyzed certain necessary functions. For example, it has affected my urination – I don’t know when I need to relieve myself until my bladder is completely full, which can be dangerous if I suddenly feel the need to sneeze! Further to this, I rarely feel hunger pangs and, unless my meal is really tempting, I often find it hard to force the food down.

My feet have also become incredibly painful often making it difficult to walk or stand.

Imagine if you will, knives cutting into you, all-around your ankles. Eventually, the soles of my feet (which were previously almost numb) now feel like I am walking on broken glass. I can only walk comfortably on the soft, wet sand close to the surf at the beach.

Not only is there severe pain, as sufferers tend to always feel tired, having to lie down for a nap often several times a day. Many have to give up their jobs and are housebound.

Changes to metabolism

Probably as a result of the appetite problem, at one stage I lost a huge 20 kgs (44 lbs), returning to what is virtually my teenage figure. That might sound great, but it was worrying at the time.I have put back around 10 kgs (22 lbs) since.

Also, through various misadventures, including a physiotherapist massaging my original shingles location, I have experienced even worse and almost unbearable pain, leading to half my hair falling out on two occasions, which the doctor believes was the result of the shock of additional pain.

Imagine a cancer sufferer on heavy chemo – that is what it was like – handfuls of hair coming out as I washed it in the shower. While I tried to grow the hair out before cutting it, I was eventually forced to have it cut short, at around which time another major change to my system occurred.

I have always had straight hair, with a slight and irritating natural wave, and tend to keep it long. However, around a month before cutting my hair, my fringe started curling up in a strange upward wave.

On cutting my hair, it turns out I am now naturally curly, which I never was before. Friends rave about it, saying I look “great” but it is hard to get excited while wondering what on earth will happen next!

'Medication'

Neurologists can only offer drugs that are normally taken for epilepsy, as well as a range of anti-depressants. No normal painkiller works for the pain. Some of these drugs, like Gabapentin, are powerful and tend to numb the mind and make you feel constantly drowsy. As a writer, I found it distressing that I could never think of the right word – sitting with my hands poised over the keyboard and unable to quite grab the perfect word from the tip of my tongue.

I have tried patches with a local anesthetic (Lidocaine), but they only served to increase the pain in the surrounding areas.

Capsaicin ointment, prepared from hot peppers, is supposed to eventually fool the nerves and calm them, but living in a hot climate, this had the opposite effect.

While it varies in all cases, most of the drugs offered do little to relieve any of the side effects of PHN. I have been through almost the whole list so far, with no success. I can only sit and work at the computer if I have a hot water bottle underneath my left buttock and another to rest my feet on. In summer temperatures, obviously this also means having the air conditioner blasting!

Permanent condition or not?

Some people have reported that the pain comes and goes, but in my case, it keeps getting worse in stages. Each time the pain increases, endless tests are run, including MRIs, CT scans, x-rays, ENG/EMG tests and more.

The last time I saw my neurologist was when I spent a day and night in hospital, going through all the various tests, only for her to give me a second prescription for vitamins. As I already take the necessary B vitamins, etc., this had little effect on my condition.

No one truly understands

One of the worst things about PHN is the inability of doctors, close family, and friends or any others to understand exactly what you are going through. Mostly, we look the same as ever to our friends and family, while inside we are being constantly ravaged with pain.

The two neurologists I have seen so far have no empathy whatsoever and absolutely no idea of what PHN truly involves in their patients. Clinically, they know what the condition is, but they cannot picture how it feels.

I clearly remember a visit to my neurologist's surgery, where I was literally unable to sit down. She repeatedly asked me to sit in a firm tone and I repeatedly told her I couldn’t.

The only doctor who has had any empathy was a doctor of internal medicine, who suffers from a similar condition herself. One lady at the pharmacy I use also has an idea of how bad PHN is, as her father suffers from the condition.

At one stage, a blood test showed antibodies for Lyme disease, which could explain a lot of my symptoms, but a more intensive Western Blot blood test came up negative, despite the fact that I now have virtually ALL the symptoms of that disease.

While I previously had no arthritis, the base of my spine is deteriorating, making it difficult to do physical work, such as housework, gardening etc.

While they say this damage has no effect on the PHN, it certainly does make the pain worse, with the nerves tingling and painful in that area of my body whenever I clean my home.

Facebook support does help

Many of us moan about Facebook, but sometimes the social media website can help. I joined two PHN support groups on Facebook which truly help a lot. It is unbelievably wonderful to have a group of thousands of people who understand exactly what you are going through.

For anyone reading this that suffers from the condition, the two groups I belong to are "Postherpetic Neuralgia (PHN)/ Chronic Neuralgia Support Group" and "Postherpetic Neuralgia Support Group"

We also exchange notes on the various “treatments” we have experienced, including which have helped, not helped, etc.

Some write about how they want to end their lives, others try to comfort them, and we generally get our feelings out in the group.

Many have failed relationships and marriages through PHN. Interesting to note, if the male is the sufferer, the wife tends to be sympathetic and often joins the group to get help. If it is the other way around, and the wife is the sufferer, often the relationship can fail, as the husband has no patience or sympathy. While I am not saying this is always the case, it certainly does happen a lot.

It was also revealed that, while mostly the condition affects older people, even people as young as in their 20s are being affected and cannot work or have a normal life. One 29-year-old recently wrote on Facebook that he will never have a meaningful relationship, as the shingles, and later PHN hit him where it hurts most – his private parts.

Try to understand what people are going through

If one of your friends or a member of your family suffers from this debilitating condition, please try to understand what they are going through and treat them with loving patience. While you may never fully understand what we are going through, there is nothing worse than people shrugging off your pain, saying you must be exaggerating!
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