I have CRPS, Complex Regional Pain Syndrome.
I was literally weeks from retirement, a month or so from my “Golden Years”, when I felt
the first symptoms. Being an active outdoorsman and sportsman, my career as a UPS
driver had left me strong and fit. But when my mother was diagnosed with Alzheimer’s
disease I took Certified Nursing Assistant training, and spent my final seven working
years on a nursing home dementia ward, helping people with Alzheimer’s and other
forms of dementia. It was life changing, rewarding work. So much so that as it neared its
end I authored a book, “A FUNNY THING HAPPENED ON MY WAY to the Dementia
Ward, Memoir of a MALE CNA.” An endeavor which found success, leading to speaking
engagements around the country.
Everything was perfect, except for those symptoms.
The little bumps I had first felt on the fingertips of my left hand that would one day lead
me to a diagnosis of CRPS. I couldn’t see them but I knew they were there. They were
starting to hurt. Apparently it takes eighteen months for the average American male to
see a doctor for a problem like this, because after a year and a half the pain had
reached the point I simply could not ignore whatever was going on with me any longer.
My doctor, a man who had helped bring my children into this world, a man who had
known me my entire adult life, a man who once insisted, “No, you can’t golf with broken
ribs”, laughed at me. Squinting at my hand he saw nothing, and although I insisted
something was most definitely wrong, he sent me home with a sugar pill and the
assurance, “Everything will be fine in a week”. That was seven years ago. MRIs, cat
scans, tens unit trials, nerve block injections, acupuncture, water therapy, mirror
therapy, physical and occupational therapy, carpal tunnel surgery, chiropractors aplenty,
natural healers, I’m sure there’s more I’ve forgotten, and still, the pain worsens. Like a
swarm of bees, stinging so intense it is hard to imagine. And, the pain has found a
friend, Allydonia, hyper sensitivity to touch. Take a dollar bill from my wallet, remove a
coin from my pocket, pick up silverware, or God forbid fingers touch each other, causing
them to wrinkle up like they’ve been under water, and bringing with it a sensation so
uncomfortable words fail me. Stenosis has set in.
My fingers are shrinking, leaving a
fold of excess skin with nowhere to go. I still laugh at a joke, get mad at politicians, live
and die with my sports teams, trying my best to carry on as though everything is normal.
But there is loneliness to chronic pain. I want people to know how much I hurt. But just
like my family doctor seven years ago, they see nothing. They miss the angry purple
color my fingertips will often display. The skin so shiny and smooth, leaving a finger
print is no longer possible.
They don’t see the struggle of getting dressed each morning.
Hooking my thumb into the opening of a sock and pulling, praying my fingers don’t get
involved, because there will be hell to pay. That soon they will turn cold. The stings will
return, and anything, anything I touch, will make amputation seem so very tempting.
They don’t see or feel any of the nervous system break down, sending constant pain
signals to my brain. It’s hard to visualize CRPS, Complex Regional Pain Syndrome, so I
ask you, instead, just try to imagine it.