My season in hell; I survived Shingles
It was right after Christmas that I began to feel a sharp pain in my shoulder blade area that got progressively worse. I thought I had pulled a muscle, so went to my favorite spa and splurged on a back massage.
Unfortunately this made the pain worse, so the next day I used an over-the-counter pain patch on it. The patch helped for that day, but when I removed it I discovered a rash had formed where the patch had been. Thinking it was just from the patch, I used some benadryl ointment on it.
The pain continued to grow as my back formed blisters through the next day, and by the evening I was writhing in pain. In tears I asked to be taken to the walk-in clinic because my doctor’s office was closed. On the way there the pain took over my mind; I saw all of the anger, selfishness and ugliness outside the car window, while my ears heard the horrors on the news over the radio. In agony and fear I thought “how can I live with this?”
The walk-in clinic was clean and bright and took me in right away. The women at the front desk and the doctors and nurses all seemed to be compassionate, caring individuals and they helped soothe my phyche — if not my physical body.
“You have Shingles. I’m sorry.”
That’s what the young doctor said after seeing my back. I asked her why she said that, and she told me that she had heard how awful the pain was from shingles. She prescribed an antiviral medicine to combat the shingles, and lidocaine ointment for the pain. She told me to make an appointment with my primary care doctor right away.
We went home and bathed the area, which now consumed a ragged 6–8" strip from my spine in the back all the way around my body, only stopping at the spine in front. We tried the lidocaine cream on a small area: it got hot, but there was no pain relief.
So we went with old-time medicine and got out the calamine lotion. That’s what we used for chicken pox, and poison ivy, so that’s what we used on the blistered flesh on my body. I took the antiviral medicine for the 4 days it was prescribed, and hoped my doctor could help me with the pain.
The pain was brutal. If you poured acid onto your skin and then took a electrified wire and touched it to the site over and over then you would have an idea. I couldn’t sleep, eat or do anything else. I think I went out of my mind for a while, because now I can barely remember anything but the pain.
Do you know that seniors in their 70’s and 80’s who contract shingles have the highest rate of suicide? It now strikes young people too, for some reason. No one knows why, and there are stories of people getting it when their immune systems haven’t been compromised.
That week I saw my doctor, a woman who has treated me for almost 15 years. The first thing she said upon seeing my back was “Yup. You have shingles. I’m so sorry.” When you’re in that much pain, tears flow easily.
My doctor was thrilled that we used calamine lotion on it, and that the blisters were dry and the area was clean. She told us that the risk of secondary skin infection was low because we were bathing it daily and using the Calamine lotion. Anyone living alone would find it impossible to do.
Going through the list of possible medications with her was tough — I cannot and will not take opiates and I am extremely sensitive to medicines. We settled on Gabapentin, and added an evening dose of Amitriptylene to help me sleep.
I found that I began to feel the pain lessen within 20 minutes of taking 2 pills, and got almost total relief from around 1hr.-3hrs. Normally the pain reminded me to take the pills every 4 hours or less.
Once I was prescribed the two medicines there was little else my doctor could do for me, or even tell me. She had seen it, but didn’t have much to say about it, and I had questions. So I went online in search of information.
I found information on the med websites giving the standard information about the chicken pox virus that leaves a version of itself to live in your spine. It waits until your immune system is at a low point and it pounces — erupting as shingles.
There are pictures and listings of drugs, but not one really told me how long this would take to heal. Then I found the shingles support groups. I read about people who had it, and they did receive support — but I also read person after person saying their eruptions had come back two and three and four times in a year. I found that I couldn’t bear to read this and stopped searching.
The pain and pills took over my life. I could sleep when I took the pills, and so I dove into sleep as a release from the incessant pain. I couldn’t go to work, or outside at all because even the thought of wearing clothing on my top half of my body was impossible.
After three weeks or so my skin healed. If you touched my back I could not feel it — I had lost all feeling where the shingles had been. I had scars that kept on burning with pain and the muscles underneath that area were rigid and wouldn’t function properly. The entire band burned and took my breath away with what I called “lightning strikes”.
More research revealed many cases who are severe have Post-Herpetic Neuralgia: the shingles virus has burned your nerves away. You have a CHANCE that they will grow back. If they do it’s as painful as the original outbreak. Again I read about people who had this pain the rest of their lives. I stopped reading when my desperate tears flowed once again.
I endured this pain for months, in fear that it would continue forever. I asked if I should see a neurologist, and my doctor said she would refer me to one if I wanted. She also assured me that she would continue to refill my prescriptions but had no other advice for me. I searched for any herbal remedies that might help regrow my nerves, and also kept my diet as pure as possible — even adding Lysine capsules to supplement the amino acids that supress viruses.
Cold became my friend, and heat became the enemy. Any heat caused the pain to flare into a pulsing monster that brought me to my knees. The muscles would clench, and more than once tears would come.
In my searches I found a “Shingles Cream” on Amazon and ordered one small jar. It had among its ingredients both manuka honey and blue algae. When it came we put it on my back and the burning lessened. I discovered that if I put the cream on right before bed I could go to sleep and when I awoke — before I moved a muscle — I had no pain! The moment I moved it returned, but for that moment I remembered what it was like to live without pain.
The pain was so excruciating that I used up all of my leave time at work, a job that I’ve been at for almost 20 years. I had to use FMLA. My employers were sympathetic and assured me my job was safe — but it pays to get your own insurance, right? My doctor was happy to fill out the paperwork safeguarding my job for a year.
So I went to work wearing the baggiest clothes possible. I put the cream on my body early enough for it to become semi-dry, and took my pills every few hours. I learned that eating an apple while driving will help keep you alert. If you saw me walking to my car at the end of the workday you’d often see me stop and freeze in place because of the pain. In a few minutes I’d continue on until I got where I was going. I’d come home and whip off my top and hurry to put more of that cold cream on my body, then eat, take pills and go to bed. That’s how my days went — no shopping, no restaurants, no seeing friends.
Around the third month we discovered that the sense of feeling in my back was returning oh-so-slowly! It started nearest my spine and progressed as I’ve been healing — from back to front. The burning and lightning strikes are the heaviest where the nerves are regrowing — I’ve learned the hard way. I read that nerves regrow about an inch a month. Oh dear!
It took two more months for feeling to return to the entire area. It’s been over six months from the time it started and I’m still in pain; still taking pills; still working and hoping to recover from this ailment. I can now work my 40 hour week and go home and have almost a normal evening before going to bed around 8:30. My strength is returning slowly, but I’ve also discovered that my right arm has atrophied from not using it for 5 months, and now I have to have physical therapy to get it back in shape.
I’ve read that sometimes the nerves heal and you just wake up without pain. This is my hope and dream.
I have been blessed with someone who cared for me tirelessly through all of this. I will never find enough ways to say thank you, but will spend the rest of time trying.
I have continued to research for information, for success stories, and for a cure. So far I’ve not found much. What I have discovered is an anger at the thought that this might have been caused not by a random change in my body’s immunity, but by an outside man-made trigger. There are so many theories, and some might be misplaced conspiracies, but the facts speak for themselves and that’s what makes me suspicious.
Before I got the shingles, I thought I was strong. Now I know I am stronger.
Before I got the shingles, I thought I was caring. Now I know the depths that pain will plummet you to, and I empathize with all who are in pain — no matter the cause.
Before I got the shingles, I couldn’t understand how people got depressed when the sky was such a beautiful blue and the leaves and grass such a vibrant green; now I know how pain can rob you of even the sight of the sky. Pain can make you turn inward and see nothing but the dark depths.
I don’t know if my life will ever return to it’s ‘pre-shingles’ state. I’ve been changed by it: I’ve become more aware of the pain in the world; I’ve become more dedicated to my writing; I’ve become a little more courageous. Maybe pain brings wisdom, but destroys youthful naivete, and also brings regret.
Be good to each other. No matter what you see on the outside, you have no idea what levels of pain someone is struggling to endure. Help if you can, sometimes just a caring word can bring tears of joy.