'Living' with the hell of Postherpetic Neuralgia and Peripheral Neuropathy

When I was two years of age in 1954, and still living in England, I ruined a family holiday in the Isle of Wight. A couple of days into the holiday, I came down with chickenpox and we had to go home. Who would have thought karma could apply to an innocent toddler? It certainly feels like it now.

I apologize in advance for my lengthy rant below, but I feel the need to get it out of my system.

A case of the shingles

I have been relatively healthy my entire life. I have never had a flu vaccination, and never truly had a case of the flu. I rarely need antibiotics - the only time I really needed them was when I was bitten by a spider and suffered blood poisoning.

This all changed in 2015 when, while under much stress worrying about my elderly parents' health, I came down with shingles. This is a nasty side-effect of chickenpox and causes a painful rash - in my case on my left shoulder blade. I was prescribed antivirals and pretty soon got over this. I never realized it would come back to haunt me, but it did.

Postherpetic neuralgia rears its ugly head

In was in March 2018 that I started experiencing sharp and agonizing pain in my left shoulder blade. After reading up on this, I came across postherpetic neuralgia (PHN). When I phoned a hospital in Marbella (I live in southern Spain), I was told I needed to see a neurologist, but there were no appointments available right then. They suggested I visit the emergency room at the hospital to get an earlier appointment, which I did.

One of the most common "treatments" or "pain relievers" for PHN is gabapentin, a drug normally used by people with epilepsy. This horrible medication is brain-numbing. I work as a writer and I literally couldn't come up with the right words while taking this drug. It didn't do anything at all to relieve the pain.

I went back to the neurologist and told him gabapentin wasn't helping me. He instantly prescribed lidocaine patches and told me to stop using the gabapentin. Just like that, stop.

Two days later, while feeling completely and utterly suicidal, I looked up gabapentin online. It turns out the only way to stop taking this horrible drug is to carefully taper off. When I mentioned it to my doctor's secretary, she passed on that he believes that only applies to epilepsy patients, not PHN patients. Yeah, sure, doc. Naturally, I instantly changed neurologist! Oh, and by the way, the patches didn't help either. They stopped the pain in the main site itself but increased the pain in the surrounding area.

Pain spreads to other areas - peripheral neuropathy (PN)

By this time, the condition had spread to my left buttock - it felt partially numb and I found I had trouble peeing and never felt hunger. Eventually, my feet went numb too.

To make a long story short, the numbness in my buttocks and feet soon changed to agonizing pain. Sitting was agony - it felt like I was sitting on a sharp spike, while my feet felt like I was walking on broken glass, with knives cutting into my ankles.

Each time I saw a neurologist, they sent me for endless tests, including MRIs, CT scans, EMG/ENG, x-rays, blood tests, you name it. They gave me prescriptions for opioid painkillers, which did nothing for the pain. Eventually, all my neuro would do following the tests was give me a prescription for vitamins. I was already taking the necessary B vitamins, magnesium, etc, that are recommended for PHN, so this, of course, did nothing further.

Hospital stay and endless tests

In fact, in June 2019, when the pain increased and I was having problems even walking, I sent myself to the emergency room again. I spent a day and a night in hospital, undergoing all the tests yet again. When releasing me, the neuros (both of them this time) once again gave a prescription for vitamins. This time they were extremely expensive vitamins and as they are para pharmaceuticals, I couldn't claim anything back from health insurance. The only different thing was that they recommended I visit the pain unit at the hospital, which they had never mentioned before.

I tried my best to get an appointment at the pain unit but was told there was a two-and-a-half- to three-month wait for appointments. As the whole idea of the pain unit is to experiment with different forms of pain relief, it doesn't seem logical to always have to wait two to three months between appointments? So I didn't go.

A few months later, I did make an appointment, but that appointment was for late March 2020. Of course, Spain locked down for the COVID-19 pandemic that month, so the appointment was canceled. The only way we could have doctor's appointments for anything other than the virus was by video and apparently, this wouldn't be suitable for my condition as no tests would be able to be carried out.

Once face-to-face appointments became available again, I phoned to make an appointment, only to find there was a three-month wait yet again. They marked me down for any cancelations, but I never heard from them.

Constant pain

Over the last couple of years, I have mostly been in severe pain. Luckily, I work from home - there is no way I could have held down a regular job with this condition. However, working as a writer and website owner is so damn difficult when it is so painful to sit. I literally have to place a hot water bottle under my left buttock to be able to work for any length of time, and often have to stop for a rest.

During summer, I had the hot water bottle, plus the air conditioner blasting to keep me cool - this is not a pleasant way to live, LOL. By the way, at first, I tried standing at the computer, but once the feet joined in the fun, this, of course, was no longer possible.

'Anti-social' behavior

I have had to completely change my social habits - there is no way I can go out for an evening, enjoying drinks or a meal with friends, as I cannot sit with comfort. If I pass friends on a restaurant terrace and they invite me for a spontaneous coffee, I have to decline. Just stopping for a coffee with no hot water bottle or cushion is too much pain!

Other joys of PHN and PN

In recent weeks, I suffered a (second) urinary tract infection - it is now becoming a regular thing for me, it seems. This is because I only know I need to pee when my bladder is completely full and I also have difficulty peeing, due to my condition.

During this time the pain ramped up yet again. I cannot take my dogs for long walks, and when we do walk, if I see a chatty friend up ahead, I have to divert... standing and chatting is just too damn painful. We go only as far as we need for the dogs to do their business and then go home to lie down for a while.

As I tend to be a loner, with only a few good friends, this didn't bother me at first. But suddenly, I am finding I feel jealous of friends going out for a fun evening, or jogging on the beach, things I cannot even dream of these days.

I should mention that along the way, doctors found Lyme disease antibodies in my blood and considered this disease may be causing my pain. However, after a Western Blot blood test, I was told I didn't have that disease. On top of this, my lower spine has undergone a lot of problems - my slight scoliosis became more pronounced among other things. Now I get nerve pain in my lower back and over my buttocks. I saw two osteo doctors to have this checked out, to see if the damage to my spine was causing my pain, but both said no. However, I note that if I do anything strenuous, even simple housework, the pain in my lower back does get worse.

Hidden suffering with PHN and PN

Probably one of the worst things about PHN and PN is the fact that people cannot see you are suffering. I am constantly being told, "Wow, you look so good!" even though the truth is far from that. For the first time in a long time, a friend I bumped into while walking at the beach recently asked me to describe the pain.

I told him, "I feel like I am walking on broken glass with knives stabbing both my ankles." I said I feel like I am sitting on a hot spike, with stabbing pains in my back and lower back." I am not sure if he believed me.

Some friends have blamed my condition on my age (67), but unfortunately, these days kids as young as eight are getting shingles and even PHN!

Quite honestly, the only people who truly understand are fellow sufferers. Even doctors have no clue how bad PHN and PN truly are. Luckily, we have a couple of support groups on Facebook and sympathize with each other, share possible remedies etc. We regularly have new members in their teens and early 20s, suffering from this damn condition.

The only good news is, with some people it goes away, but if you suffer this for more than two years, you are stuck with it for life. Oh joy, after a life of good health, I get to suffer this in my declining years!

One fellow sufferer pointed out the other day that there used to be an Annual Postherpetic Neuralgia Awareness Day. I think its time to start one again, to let people know the sheer and utter hell we are living through.

Believe it or not, I still haven't completely given up and plan to visit another medical clinic in Fuengirola close by. Whether they will be able to help me, is yet to be seen.

Again, apologies for my lengthy rant! And welcome to my world.