I have updated this article on 23 April 2019.
Prior to my bout with Shingles, I heard about them on TV in advertisements. The little that did stick made me believe that it was something that affected old people only, so I didn’t pay much attention at all. On the 29th of January, I asked my wife to take me to the ER due to pains in my lower back which seemed to grow and grow. My assumption was that I might be having problems with my kidneys and that scared me. The pain I was feeling was growing and becoming unbearable. At the hospital, they did tests on me and the doctor diagnosed me with “muscle spasms.” I was given an injection for the pain and a prescription for Valium.
A day later, I was a little looney from the Valium and I asked my wife to get me the heating pad. I assumed that the heat would help with the spasms. A few hours later, my wife woke me and admonished me for falling asleep with the heating pad turned on. I removed the pad and my wife checked my back and I heard her gasp. She told me that I had burnt my back, that I had left the heating pad on too long. She explained that I had a large patch of burn marks. The pains continued to become worse. A few days later, I went to a previously scheduled doctor’s appointment (with my personal physician) and after seeing my “burns,” he told me that I had not burnt myself, but that instead, I had the Shingles.
“But I am not old!” I said to myself (I am only 66 years old).
As the doctor explained what Shingles were and how they were going to affect me and my life, it sounded more like he was sentencing me to some sort of torture. I stood, leaning against the wall, with tears making rivers down my face. The pain grew beyond any level I had encountered before (other than when I had surgery on my rotator cuff). The doctor explained the new prescriptions he wanted me to start taking and the process he wanted me to follow. I dimly heard his instructions through the pain, thank God my wife was with me. She wrote every instruction down so that we would follow it religiously. She also did not want me to hurt any more than necessary.
I came to categorize the pain “attacks” (as I came to refer to them) into three different groups. First, there are the regular pains. This is the normal result of the rash that the Shingles produce. The area of your body where the rash appears, as well as the area around that, becomes extremely tender and painful to the touch. Wearing any clothing (the rubbing and/or touching of any material on the affected skin) is painful, so, it gets worse when you have to dress to just going to the doctor’s appointments, etc.
The second level of Shingles pain comes in the form of what I call attacks. These attacks come in the form of a sudden flash of pain that starts at one point on your body and increases in pain extremely and lasts for about 30 seconds or up to a minute and a half. This may sound like a small amount of time but the pain you will be experiencing will be so painful you will think it is lasting for hours. The best I can explain what happens, not being a doctor myself, is that a particular area of the rash has deteriorated to the point that the nerve endings become so damaged that they cause you a pain that grows in intensity for short time. Depending on your ability to deal with pain, it will feel excruciating and may cause you to cry out.
The third level of Shingles pain is the worst. Similar to the second level, the pain will begin at one point and increase suddenly and without warning. The difference is that this time a strong burning sensation will shoot throughout the whole area of the Shingles rash causing you to feel like you are on fire. Then the next part begins, your muscles (which are directly near to the Shingles rash) will start to spasm, which increases the level of pain to which you will be subjected. This level of Shingles pain can last as little as one minute and up to five or so minutes. In the end, you will be left feeling drained and physically battered.
My doctor prescribed Gabapentin, which is a drug that should help deal with the nerve pains from things like the Shingles. He also prescribed additional medicines which are intended to work, as he said, “from the inside out.” After having gone through the process of dealing with Shingles, I understand what he meant. Shingles attack your nervous system by damaging the nerve endings which are directly impacted by the rash the virus produces on your body. This is why he also added that any healing would have to be “from the inside out.”
After another week of suffering from the viruses’ attacks, I asked my wife to take me back to the ER. My body felt beaten and abused by the constant attacks. Because of the location of the Shingles rash and how it extended a bit down to my right leg, I had trouble just walking. When I arrived at the hospital, I was taken to an ER room where my wife and I waited for the doctor. For the first time since getting the Shingles, the doctor did not take forever to finally come and see me. As he walked into the room, I noticed he saw my pain in my eyes. After a few questions and answers, he walked around and closer to my back. He reached over touched the affected area. He told us that the Rash was drying up and would soon be gone. The other thing he did was prescribe “Lyrica”. Like Gabapentin, Lyrica works on the nerve pains. Somehow it blocks many of the pain signals to the brain resulting in you suffering much less pain. I started out at 300 mg per day (150 mg twice a day). In the 24-hour period before going to the ER that last time, I suffered around 9 or 10 of the level 3 pain attacks. After starting on Lyrica, in the first 24-hour period, I suffered one Level 3 attack, and then thereafter two Level 2 attacks. Three days later, I went to see my personal doctor and he increased the Lyrica to 400 mg (200 mg three times a day). Other than the pain of the rash itself, the tenderness of the brutalized muscles, and the sensitivity of the nervous system in the area where the rash was, I was no longer suffering the major attacks I explained earlier.
But, here is the bad news, the doctors have explained to me that I will still have to deal with the pain and skin sensitivity for a possible two to three months more. I am sure that they meant that the pains would taper off with time (at least that is my hope). I have had to sleep on my left side due to the affected areas on the right side of my body. I am tired of sleeping only on my right side. Besides having to wake to go to the restroom at times during the night, the pains of the damaged areas of my body also wake me often as well. I have not had one good night of sleep since this started.
Today (as of this writing) it has been two months and a few days since the Shingles virus declared war on my body. Lyrica has continued to do its job. I have only had two of those of the level 2 attacks, and even then they were not as bad as they were initially. I decided to write this article and give some pointers to those who may end up victims of this mean and cruel virus. Here are some things I wish I had known before the Shingles.
1. The very minute you believe you have the Shingles, go immediately to your doctor (or the ER at a hospital) question them on the probability of using Lyrica.
2. Keep in mind that you will be contagious to others. A search on Google will get you the latest information, but, among those who may get the virus from you will be pregnant women and people who have had the Chicken Pox when they were young. Even then, what would have to happen is that there is physical contact with you, they won’t catch it through the air.
3. If you happen to be married at the time with someone who is willing to go through this terrible time helping you with this and that, or if you have some other person who chooses to be that helper, be careful to show them your gratitude by being cooperative and kind to them. This time of pain and anguish on your part will also be an emotional toll on them. This will be especially true if they will be close by at night when they could be sleeping, but instead, they wake up each time you have an attack or just need their help to do something like just sitting or standing up. This ordeal impacted my wife as much as it did me, except in her case the “pain” was that of not being able to do anything to help me when I had one of those level 3 attacks.
4. Understand that the virus which produces the Shingles will cause a very ugly rash on your body that may last over for a month. You may think that once the rash is gone that things should go back to normal, but no. The damage the virus does to your nerve endings, throughout the area the rash covered, will take some time to heal. During this period, you will continue to suffer pains. It will take time for your nervous system to heal again.
From the first day until the last day of dealing with Shingles (and I have not gotten there yet), you can expect misery. You will wake up at all hours of the night, hurt during the day, will not be able to find a comfortable way to sit lie down or anything else. It starts off bad and stays bad all the way through. Just remember, if you are over 50, ask your doctor if you are eligible for the Shingles shots (there are 2 of them that you have to get). If you are over 60, run to your doctor’s office to see about the Shingles shots. One of every three persons gets the Shingles.
As I write this, I am still dealing with the Shingles. Well, let’s say the results of the Shingles. My doctor has pronounced me no longer ill of the disease but instead in the “recovery stage.” I am not contagious nor is the disease active but the results are. On the side of my body, where the disease spread, I still get pains. I know that if weren’t for the Lyrica these pains would be more severe. In the exact spot where the Shingles began, I still have a numb area about the size of a hand with the fingers spread out. It hurts when touched or aggravated, which is almost all the time. You see, the spot I am referring to is on my right side back, just barely above my buttocks and toward the middle of my back. This means if I sit up to do anything, it will agitate the damaged area and cause me pain. The pains come in the form of shooting pain which I call “stabs of pain.”
I will admit that as time passes (on the 29 of April it will be three full months which have felt like six) the pains are reducing bit by bit. I still struggle with wearing clothing or just sitting in my chair at my computer in my home office. I have to sit lean forward to avoid (as much as possible) rubbing my back against the chair, not to mention that I am sitting on part of the damaged area. My damaged muscles are slowly recuperating and they are continually sore. I walk better now, but I still have that feeling of carrying a big rock on my side. At the peak of this, I could not walk even a few steps without being “punished” by the disease for doing so. Now, I am able to walk around the house, or to church, or wherever, with better ease, but I still feel the “rock.” As the discomfort grows, it will force me to get to a chair. The pain may grow slower now, but it still does.
Dealing with the Shingles felt to me like falling into a deep hole. It felt like my world just stopped. For the first two months, all I was conscious of was that I was suffering terribly. I cried often pleading with God to heal me and take all of this away. I understood the words of Jesus on the cross, “My God, why have you forsaken me?” There were times, during the worst pains, that I wanted to die and get this over with. I remembered the words in the Bible admonishing us to understand that we could “do all things through Christ who strengthens us.” But, I did not have that strength at those times. The pain was intense and it was repetitive. I lived in dread of the next attack. I pleaded with my wife to help me and she couldn’t. She just cried along with me. I so wanted to die. I had never felt pain like that before. It was as if the disease purposely punished for no reason. After every attack, I would lie on the bed trembling, anticipating the next one.
Those attacks, the worst ones, went on for about a month, and then came Lyrica. The drug takes about a day after you begin taking it, for the full effect to kick in. I took my first dose at around noon and had several attacks throughout the rest of the day. The next day, I had a minor attack, and then I did not have any more attacks until a week later, but those two were minor ones as well. Now, don’t misunderstand, when I say minor I do not mean that those did not hurt. The minor attacks hurt very much, the difference is the intensity and duration of the pain. They hurt like crazy, but not like the big attacks. Since then I have been little by little getting better. I am still taking the medicine, but that will have to change.
Lyrica is a drug that can become addictive to some people. To me, it is just a means to suppressing the pain, period. Nevertheless, Once I get ready to stop taking the drug, I will have to do so in steps. I take three doses of 200 mg three times a day. The first step to stop using Lyrica will be that I will need to reduce my dosage to two times a day. Afterward, I will have to reduce it to once a day. The next step will mean reducing the strength of the drug to probably 100 mg once a day for a while and finally reduced to 50 mg.
Besides being “lifesaver” for me, Lyrica has its side effects. In my case, the most obvious was the drowsiness. To this day, I go around feeling sluggish. Before using Lyrica, I struggled terribly with falling asleep. I would sometimes take hours before I would fall away into dreamland. Now, I can lay down and rather quickly I will be in lala land. The problem is that I have to force myself to focus on something, such as speaking to someone, reading a book, watching a tv show, or writing this article. The sooner I can get off the drug I will be happier.
One last point, after I got the disease, I began finding out how many of my acquaintances and friends had also gotten THE Shingles. The thing was that they had all gotten smaller patches on various parts of their bodies, but nothing like what I experienced. Each and every one of them got it and were over it in a month or so. They did not experience the “big” level three pains I did. As I found out about these people, I was left with one question. Why me? What was it about me that I had to get the “grand deluxe” as my doctor called it? Was I supposed to learn some lesson or something? I guess I will never know.