Shingles – Things I Continue To Find Out The Hard Way

Posted on December 20, 2018

Truth!  Of all the stupid, hateful, detestable, humbling, miserable, one that probably won’t kill me but will seriously impair my ability to love my life at this minute, diseases, Shingles tops my list.  I read an article that said that over a million cases of shingles are diagnosed every year.  So, if it is any comfort to you, just know that out there amidst the people, lots of someones are hurting like blazes and alternating between fussing and praying over this disease.  Those who recognized that I was battling shingles started asking me questions.  The more questions they asked the better I understood that there simply is not a lot of knowledge about shingles readily available.  That was when I came up with the idea of writing an article about my bout with shingles.  I figured it would be a good article, not too long and wrapped up in a couple of months.  I started the article and now, 3 months later, I am still a hot shingles mess.  So, I have returned to the original article and decided to make it more of an ongoing soap opera type of story.  As I work through the experiences that shingles and only shingles can give, I will try to share them with you.  Let us return to the merry month of May, 2018,  when shingles turned up at my house with a surprise for me.

It was the middle of May, on Wednesday and suddenly I started hurting from the center of my right hip all the way down to my toes.  Oh Lord, only He knows how bad this thing hit me.  I was convinced that the terrible pains had to be from my having done something catastrophic to my back.  I managed to get an appointment on the coming Tuesday so i  went to see our family doctor.  The pain in my right leg and hip joint was excruciating.  It was as if someone was trying to twist my hip joint out of its socket.  I had noticed a few places that looked to be a skin rash.  However the burning “road rash” type pain,  the “it has to be 100’s of bees stinging my leg” pain and knife like stabbing pains in my hip joint seemed too severe to be related to the patches of rash scattered about on the surface of my right leg.  Thanks to a couple of past surgeries I had some opiate pain meds to help with the pain until I could get in for an appointment with my doctor.  If it had not have been for that, I would have had to have gone to the hospital in a twisted screaming mess.

Tuesday, I am sitting on the doctor’s exam table, dreading hearing that all the pains I am having indicate that I have jerked, twisted or maybe broken something in my back.  The two always seem to be mentioned together. Bad leg pain, hurt back.  I am not a happy camper.  In walked the doctor, who took one look at my leg, broke out with his cell phone and started taking pictures of my right leg.  “Dianna, what you’ve got is Shingles”.   No, no, my brain is in overdrive, running down its checklist.  Shingles shot, check. Body healthy, check.  My mind kept going over every reason I could think of as to why I should not have shingles.  I was floored!  I felt like my body had betrayed me.  I worked hard.  Always busy doing something.  My great job with lots of walking and activity made me happy.  Why in the world, as someone who has run marathons, would I have shingles in just my right leg? At least that is one question I did learn the answer to.  It all has to do with dermatomes.    A dermatome is a area of skin that has its nerve senses provided by a single spinal nerve.   According to Wikipedia, there are a total of 30 spinal nerves.   Wikipedia has a wealth of information about Dermatomes.  I recommend reading their information.  It will help in understanding what areas can be affected by the shingles virus.

The questions I had for my doctor poured out of me like water.  Unfortunately, answers to my questions were coming back at a bare minimum.  I was given two prescriptions, one for gabapentin and the other, a small order of pain medicine.  The appointment was over and I walked out of his office, got to my car and just sat for a few minutes.  I realized that I understood two things from my visit.  I knew I had Shingles.  I knew that I really had no idea as to what Shingles was.  That was it.  I had too many unanswered questions about shingles and no working knowledge of this beast.  However, with my trusty Mac, I knew I could find answers from those who had either had the disease or were in the business of researching the shingles virus and how it attacks our bodies.  My nagging headache and feeling not quite well actually turned out to be one of the things associated with having shingles.  It seemed to come and go.   For me, Advil, kept it from being incapacitating.  However, my trying to use Advil to treat the shingles pain was like trying to kill a fly with a feather.  It took the heavy duty pain meds for that.

The rash that had bubbled up on my skin seemed to be more on the inner side of my right leg and behind my knee, with a patch of it above my knee in the area where my quad muscles would be.  It would itch but scratching it would make it feel like it was burning.  Thus, no relief was gained  by physical efforts to stop it from burning, itching, feeling like swarms of bees were stinging my whole leg and the loss of feeling in my skin on my leg.  In fact, during the six plus weeks of having the rash, I was astonished that so many different types of pain sensations could be experienced with Shingles.  Scratch an itchy place and then it was like a hot fire poker touching my skin.  Accidentally bump the affected area and the pain can make you scream.  I scared the stuffings out of Mark when I banged my knee against the shower door and screamed like a banshee.  It was like a knife had went right into the middle of my knee.  With shingles, there is no such thing as normal aches and pains.  In fact I believe shingles has no normal anything.

One of the drugs that is given to shingles sufferers is Gabapentin.  Gabapentin is used to treat seizures and postherpetic neuralgia, plus several off-label uses.   Two web pages,  and [first page review of article of Journal of American Medical Association – the first page review gives a lot of information.  If desired you can purchase the full article at their website]   It turned out that I had side-affects from gabapentin which prevented me from continuing to use it.

Since I’ve had shingles, even with pain meds, I still have bouts of extreme itching on my leg. A good example was last night.  I’ve now had shingles for three months.  For whatever reason, the itching in my right leg came back with a vengeance.   To see if the act of scratching would make my brain think the itch had been scratched, I tried scratching and rubbing both legs at the same time.  I noticed that it did take my focus off of my right leg.  It felt like it helped a little so I think it would be worth trying.  Just a word of caution here…Don’t use your fingernails when scratching.  Only fingertips.  The last thing you would need to have would be bloody scratch marks on your skin.

One thing that did make a difference was a hot shower.  The washcloth I used had a rough terry cloth texture.  I would soap the washcloth and wash/massage my right leg with it.  During the early weeks of having that rash, it was sensitive to touch but I washed it anyway.  The water from the shower combined with the gentle pressure of my washing the rash areas and then rinsing them off made my leg feel better for a little while.   I noticed that the rash was scabbing over so I tried to leave as much of the skin area open to the air. Especially when the rash started, where my pants material rubbed the rash, I had more pain.

When shingles struck me in the middle of May, I did talk with my manager at work.  A couple of changes were made and I was able to continue working.  Going to work allowed for me to have a bit of control over what the shingles would and would not allow me to do.  Having my job to go to made it feel more like I was in charge of my life.   To me and perhaps to you, too. that is an important part of being able to say I was living with shingles.  The pain medicine was a low dose that allowed for me to handle my job duties.  My husband drove me to and from work for the first few days.  That allowed for me to see what, if any, influence the pain medicine would have on my attention to detail and ability to handle my work tasks.  After the first 5 days, I was confident in both my driving skills and my job performance.

Even when the rash had healed, I still experienced periods of itching .  This evening was a good example.  The areas where the rash had originally been started to itch.  The worst spot was where the rash had been on the inner side [medial]  part of my knee.  When I scratched it, the burning feeling was there but I’m pretty sure my pain management plan prevented  my fingertip scratching from bringing out the intense burning feeling like it was several weeks ago. back in the mid part of July.

When the shingles virus attacked me back in May, in addition to not feeling well and the headaches that came with that, I started having an incredible feeling of overwhelming fatigue.  It did not matter how early I went to bed, when I awoke, I was tired.  As my day progressed my working started making me feel fatigued.  By the time I would get home from work, it took all my efforts to move and get a few things done.  It is a fatigue that I cannot remember having had before.  Even on weekends, after light housework, I was exhausted.  Because of the extreme fatigue I noticed that my “I almost fell” moments were much increased as were my actual falls.  That fatigue was so awful, so debilitating, that it felt like the shingles was taking the last ounce of strength that I could muster up to do something.

While I am in this “shingles versus me” battle,  it lifts me to to know that I am not alone in my quest to fight the extreme fatigue, the pain  and the  disabilities that are now daily companions.  It is important for me to remember to be my best friend.  I have to admit that being my best friend was hard for me.   Living with shingles  meant that I had to acknowledge that my higher power, the Trinity, God the Father, Christ Jesus and the Holy Spirit were there for me.  Their gifts of  love, mercy and grace combined with my faith made me stronger in my desire to fight shingles and learn to be my best friend.  So very many people prayed for me as I suffered from the first stages of the shingles attack.   These people, friends, family and my church family are still praying for me as I learn how to cope with the damage to my quad muscles nerves.

Eating well and trying to make sure that I was getting adequate rest and sleep needs met did help with the fatigue.  I also started taking a complex B vitamin daily.  The truth being told about that added vitamin is that I never really believed in taking vitamins.  When it was suggested to me that the vitamin B complex would help, I just said “thanks, I’ll remember that.”   A few days later, worn out from feeling worn out, I went to Whole Foods.  After what seemed like an hour of reading labels, I got a bottle and started that day taking them.  No one can be anymore surprised than I was to find out that I was feeling better by the third day.  It could also be that the pain management treatment was allowing me to get more rest.  All I know is that taking that daily complex B vitamin made such a difference in me that my husband is now taking one of them a day.  [Update:  As of December, 2018, I am still taking some vitamins.  It continues to help me feel better.]

It is now the middle of August, 2018.  I am still having itchy places on my right leg where the rash was.   The good thing is that I can scratch them without experiencing the burning and stinging pain that occurred when I scratched or rubbed the original rash.  I don’t know if that is because I am on a pain management treatment plan or because I am about four months into this battle with shingles.  I have talked with other people who have had shingles and it turns out that the attacks of itching are an off and on occurrence.   One person, a friend of mine at my church, shared that even though it has been over two years since his attack of singles, the itching is still happening to him.  Thankfully the itching is bearable and it disappears after a few hours.  I make sure to use a good body lotion on my legs.   The last thing to have right now would be dry skin.

I’m happy to say that the extreme fatigue I experienced during the first weeks after the shingles attack has gotten to be less of a problem.  My job has turned out to be the best physical therapy for me.  I think my right leg’s quad muscles are better off having to face thousands of steps a week than just an hour or so a day work out.  As I understand the nerve conduction tests readings, parts of nerves in my quad muscles have been destroyed while other parts are okay.  I placed my hand on the top of my right knee so I could feel how my quad muscle there was working.  Compared to the quad muscle in my left leg, the right leg one feels squishy.  I have been massaging and flexing my right knee trying to help it to heal faster.  The doctor that gave me the nerve conduction test said that only time will make this situation better.  The damaged nerves have to repair and nerve tissue growth is slow.   I have faith that it will heal itself and be as good as new.  I just have to be patient.

It is now December, 2018!  Oh Happy Day!  It is update time!  I will be writing more this evening about how the last three plus months have been going.  Shingles is still part of my life, but it is secondary to my ability to enjoy my life.

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