Avoid the pain of shingles

Contributed by: Juanita
Reviewed by: Evelyn Corsini, MSW, May 2012

Juanita is 81 years old and lives with her husband in California. 

My biggest gift to anyone is to spare them the shingles.  I want people to know just how serious this can be, no matter the cost of the shot, if I had only known. I had the shingles you might say mildly about 10 years before this, that time on my stomach.  I just didn’t think I would get them again.  No lasting effects.

This last time 4 years ago I knew this was different.  The pain would start in my upper arm, travel to my wrist and up the other side of my arm.  That pain was horrible.  You could see the skin wrinkle up as it traveled.  It moved very fast, there was nothing I could do to stop it.  For someone who told the Doctor I wouldn’t need pain killer drugs as I didn’t want to get hooked, well I actually had to go on morphine when the traveling pain was shooting up and down.   That part of the shingles has not returned I am happy to report.

On May 5th, 2012 it will be 4 years of shingles pain. It is under my right arm and into my breast part way around my back. I am right handed and arm movement can trigger it easily, also wind, cold etc. I cannot wear a bra and have to be careful of the fabrics I wear. Sometimes a simple T-shirt can set me off.  The one thing that sets off the stabbing pain in my right breast is movement of my arm.  I am right handed and have been for 81 years.  It also does not like for me to raise my voice and sometimes even just talk.  Then I get a stabbing pulsating pain with every heartbeat.   My spinal cord stimulator leads do help a lot, but if I use them constantly it feels like someone hit me and left a deep hurt all the way through my breast and under my arm.

Hot weather, cold weather, cooking in the kitchen (using the stove) by the time dinner is on the table I just want to sit for a while.  I have found clothing can really be an enemy and times like that I don’t always get the connection right away, so the whole day is bad.  My underarm feels like raw meat if I get too warm.    Taking a shower has not been fun because the water hits and hurts, not so bad now as in the beginning, but sometimes it takes courage to hop in. Sleeping is not a problem because I am laying quiet and not moving my arm.

The one thing that has slowed me down the most is riding in a car.  The bumps, stops and starts just send me into orbit.  Pushing a grocery cart is no longer an easy task.  Reaching for things to put in the cart is no longer a piece of cake.  By the time I get home my day is over. I don’t give in too often, but I would just like to sit and stare and not move an inch. Needless to say, traveling is on the back burner and it looks like that won’t change.  I tire so easily now being in constant pain.  I just want to greet each day and hope today will be better.

I started on tamoxifen as a treatment for breast cancer 6 months before the shingles came, so I did not get a shot and cannot have one now, Cancer free 5 years; still on tamoxifen.  I work with the public and I get to know them pretty well.  Interesting, I have questioned those that have told me they had shingles.  I have lost count of the ones that had gone on cancer blocking medications and ended up with shingles in a few months.  I would be interested to know if there is a connection, so that people going on the drugs could get a shot before they start.  Many of them get it in their eyes and hairline and face.   They have been lucky if the pain subsided in about 6 months.

I have spinal cord stimulator leads, with a remote, these last 2 years. It isn’t as helpful now as I think I just get used to it. I have tried many pain medicines and I even tried the patches. Probably everything people have suggested or tried with my Doctors. A combination opioid medication has been my best bet.

Why am I telling you all of this?  I just want to stand at the top of a hill and yell at everyone to
get the shot.  Not the shingles.  Make people realize the importance of the shots and the prevention that is out there.  My husband, I think got a shot the first day he witnessed the traveling pain, smart man.  Of course I wasn’t going to let up until he did.

[Editor’s note: Zostavax is the name of the shingles vaccine]

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