Sandy, I feel your pain...
I sometimes think that getting Shingles and Postherptic Neuralgia in my mid-forties is the universe's way of getting back at me for having the most wimpy case of Chickenpox when I was a child.
When Chickenpox was making its rounds in my circle of friends and family, I got to the point of wanting to have it. My younger sister had a pretty bad case and I wanted to get to stay home from school, too. Everyday I would inspect my body for signs of this "I get to stay home from school" condition and finally, I found around 4 little blisters that barely itched, on my right arm.
Well, now I have a whole new perspective because the underlying cause of both Chickenpox and Shingles, varicella-zoster virus (VZV), has turned out to be quite the nasty companion over the last year or so.
In April 2007, a little cluster of red dots appeared on my inner right arm. The red dots turned into a blister formation that to me looked like a tiny head of cauliflower. Then the blisters burst, and it took a while to heal. But quite frankly, because I was prone to getting weird skin rashes and had always been told by doctors, "Oh, it's nothing," I did not go to the doctor.
Then, about two months later, I got the little red dots again. This time, I noticed that even before I could see the dots, I had felt a painful tingling in that area.
I also did not go to the doctor that time, but given that I am a research-oholic, I did my due diligence and looked up skin rashes and diseases on the internet and convinced myself that it couldn't be Shingles (also called Herpes Zoster) because it was just one little spot and did not look like the pictures on the internet, with these poor people who had Shingles over large areas of their body. However, because of the extreme pain and sensitivity of the rash, it nagged in the back of my mind that this could be something serious...
A few months later I got the red spots and cauliflower again in the same spot. Then, it came back to me that my right arm was the only place I had Chickenpox. My mind finally made the connection and I went to the doctor. He said it was probably the kind of Herpes that causes cold sores, but when the results came back the nurse told me it was Shingles. I took the round of Acyclovir.
In March 2008, I got that tingling feeling, called the doctor and got a refill of the Acyclovir earlier enough that the pain wasn't as severe and the blisters were not as bad. My doctor suggested I go to a Dermatologist and get on some kind of regular regimen to prevent Shingles from coming back. I did just that. The Dermatologist put me on a 500mg of Valtrex once a day and said she wanted me to take the medication for TWO YEARS. Valtrex is expensive.
But, wait, there is more.
I told the Dermatologist that even when I didn't have the rash, that area of my arm would tingle and my nerves in that same area were beginning to randomly start hurting quite badly. So, then comes the hand off. She tells me I should go see a Neurologist because those issues were beyond her area of expertise.
I find a who is close Neurologist close to my house and part of my health plan. After I described my now excruciating bouts of pain in my upper arm she nodded her head and said that I had definitely had had Shingles, not the cold sore kind of Herpes, and she agreed with my diagnosis (after doing more research on the internet) that I had developed Postherpetic Neuralgia (PHN), and said it may go away in a year, in a few years, or never. All the doctor could do for me is help me manage the pain through medication. So, I became a lab rat, trying different medications with various yucky side effects.
Things have gotten better through a cocktail of Cymbalta, Neurontin, Flexiril, and Vicodin for severe bouts of pain. But I am sometimes still in EXTREME PAIN. There is no completely happy ending here, at least not yet.
On a side note, during this same timeframe I was diagnosed with Vertigo (inner ear balance issue) that lasted for months, with a Frozen Shoulder (of course the right shoulder) which required very painful Physical Therapy, Fibromyalgia, and oh yeah, I lost my job like so many other Americans.
So far, this is what I have picked up on in this journey:
1) When in doubt, have it checked out
- I should have gone to the doctor the first time I had the rash because by taking something like Acylovir early enough, it could have prevented the PHN.
2) People under 50 do get Shingles.
- OK, I am kind of close to 50 at age 46 but I have also had at least three women tell me that got Shingles when they were teenagers.
3) I am even more convinced that there is a strong mind-body connection and that stress can really wreak havoc on you physically.
4) I have to acknowledge the fact that it has been consistent pattern in my life that I don't get colds but instead get fairly rare chronic conditions on a regular basis.
5) Even though it hasn't been fun to be my own patient, learning more about the field of medicine has been very interesting.
- Perhaps I should have stayed with pre-med in college instead of majoring in government.
6) We still know so little about the human body and mind.
. "Ideopathic" which basically means "we don't know why" is a word commonly used by doctors
7) You have to be your own advocate when it comes to getting the right diagnosis and treatment.
8) Although sometimes they are hard to find, there are some great healthcare practitioners out there but they are getting burned out by the current system.
9) I would ace Pharmacy school.