She's a character, she has opinions.

Shingles, Post-Herpetic Neuralgia, and Me!

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I came down with shingles in March 2008 and as a result of it I now have post-herpetic neuralgia. It isn’t common to get shingles at my age. It isn’t common for anyone to get post-herpetic neuralgia (PHN), a chronic pain condition/disability that can’t be treated, just managed. I hit the lottery on this one! [If your doctor offers you the shingles vaccination–take it! Trust me on this, take it!]

Shingles “is a viral disease characterized by a painful skin rash with blisters in a limited area on one side of the body, often in a stripe. The initial infection with varicella zoster virus (VZV) causes the acute (short-lived) illness chickenpox, and generally occurs in children and young people. Once an episode of chickenpox has resolved, the virus is not eliminated from the body but can go on to cause shingles—an illness with very different symptoms—often many years after the initial infection.”

I never had chickenpox. My sister did. It’s possible I got a very mild case and never noticed. I was vaccinated for chickenpox so the virus could have come from there. No matter how I got that virus, I definitely got shingles. The rash was centered on my left forearm and hand and was not bad enough to be disfiguring. It healed quickly so at least I didn’t have to deal with that. I was very lucky in that when I initially had the arm pain I went to my chiropractor and he suspected the shingles and said I should get to my doctor ASAP. That meant I was in time to take an antiviral med which helped heal the rash.

Lucky me, I got Post-Herpetic Neuralgia afterward. As my doctor put it my nerves are “freaking out.” “Postherpetic neuralgia is thought to be nerve damage caused by herpes zoster. The damage causes nerves in the affected dermatomic area of the skin to send abnormal electrical signals to the brain. These signals may convey excruciating pain, and may persist or recur for months or even years.”

The thing about the PHN is that it’s chronic pain. I never realized how exhausting that could be until I experienced it for myself. For me, there are five distinct different types of pain and sometimes they can combine to maximize the joy. First there’s the basic numbness and tingling, that one’s not so bad except when I want to, say, type or use my hand. Then there’s the feeling of having long, sharp needles poked into my flesh. Then, the feeling of electricity coursing through my nerves, which often makes me twitch. That one’s especially fun because it feels as if my nerves are constantly firing. Then, my favorite, the weird and constant itching that is impossible to resist so I scratch and then endure excrutiating pain. That last one is often combined with the allodynia, or as I like to think of it, the jackpot of PHN symptoms. The hypersensitivity of my skin and nerves makes everything hurt worse and longer. Allodynia is the worst, the absolute worst. Pain I can deal with, at least to a degree. But the allodynia makes it so that the feeling of my own breath across the skin of my arm is excrutiatingly painful. So is the brush of my shirt, a piece of paper, the heat from the sun.

There’s no treatment. As my neurologist said, you don’t cure PHN, you deal with it. It’s like other disabilities in that way. I’ve tried lidocaine patches, and they help to a small degree, mostly with the allodynia. I can wear them for 12 hours and then I must go 12 hours without. They wear off after 4 hours so this gives me a full 8 hours of untreated pain sometimes. I’ve tried a course of steroids which had a small chance of helping and that failed in a big way. I had a bad reaction to it, both anxiety and pain. I’ve tried neurontin, an anti-convulsant, and doesn’t do much for the pain but makes me pass out. I’m not kidding, the drowsiness of it is huge, when I take it I’m out for 14-16 hours once it takes effect.

At the time of posting I was taking Cymbalta, yes, the anti-anxiety med, which has also been found to work on diabetic nerve pain and was theorized to help with PHN. It does, at least it does when the PHN isn’t being aggravated by other things, like me using my hand. As you can imagine, school is tough because typing deeply aggravates the PHN. Sometimes the only treatment is to do absolutely nothing–or at least the absolute minimum–with my left hand/arm. Resting like that for a day or two can sometimes rest the nerves enough so that I can function without pain for a very short while.

[ETA: Since the time of posting I have also tried Tegretol. It has a similar effect to neurontin, but along with the extreme drowsiness was a cloudiness of thinking. Basically, I couldn’t think. Since it did nothing for the pain this was also a no-go.]

The pain, obviously, can keep me from sleeping. I keep weird hours because when it hurts I’m awake, I sleep when it doesn’t hurt, and I type (meaning do schoolwork or work) when I’m able. Sometimes I can make it to classes and work and sometimes I can’t. Driving is difficult because sometimes I’m unable to grip the steering wheel with the effected hand.

[ETA: I’m also suffering from extreme fatigue and exhaustion, more so, I think, that can be excused by poor sleeping because of pain. I can and do sleep for 20 or more hours at a time, waking only to briefly eat and drink, then sleeping for even more hours. This goes on for days, even weeks, at a time. We’ve tested my thyroid and that’s fine. Next up is a test to rule out obstructive sleep apnea. And I guess when we rule out that, as I believe we will, we just accept that the exhaustion is because of the chronic pain disability.]

I’m working with the neurologist to find ways to make this easier on myself. I feel as if this has consumed my life over the past years. I had to learn to prioritize and in doing so I had to make my health the top priority. That was a hard thing to do when it came to school because sometimes I have to sacrifice attendance in order to have the energy to learn. The PHN has caused me to learn patience because resting is no longer an option, it’s an imperative. I had to slow down, I had to pace myself. I’m hoping these lessons will persist long after the PHN has gone.

[originally written Summer 2009, edited Winter 2009 and Spring 2010]

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Written by tldegray

November 4, 2009 at 8:07 pm

2 Responses

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  1. […] had post-herpetic neuralgia (PHN) since having shingles in 2008, and it was just the end of 2009 when I started to adjust to the fact that it wasn’t an […]

  2. i have had phn for a year. the qeutenza patch worked and my pain is down,anbout 30% i am scheduled for another treatment in two weeks. hopefully it has helped for allydonia.

    ray

    September 7, 2011 at 1:22 pm


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