Life into Chronic Pain

A Normal Event Common in Life

Throughout the evening at my girlfriend Bec's house, I squirmed in the deep-cushioned chair as we chatted about her kids and that the next day was Easter, and other less important, things.  Bec was first to notice the "ants in my pants," using a phrase I hadn't heard since my mother had yelled at me for squirming when I was 8 years old.  

"I can't help it," I told my friend, and within minutes, her eyes widened as something dawned on her.  "You're in labor!" she informed me. 

I disputed that, even though she was more experienced with having had 3 children and I, none.  I'd already been having back labor for several weeks but it was limited to times I tried to scrub out the tub, or other household chores.  I'd lie down and within 15 minutes, the pain stopped and I could resume my activities - except chores where I had to bend forward!  Tonight though would be different.  

By 11 pm when I left Bec's house, I was wiggling constantly to get comfortable - unsuccessfully.  By 2 am, even laying down didn't help.  By 3 pm I couldn't get relief in any position and was quickly on my maiden voyage to the maternity ward.   The next 7 or 8 hours, I survived the most intense back pain I ever could imagine!  And, as other moms will confirm, within hours of my daughter's birth I would (mostly) forget all about the excruciating pain I had gone through!

Fast-Forward 10 Years....Deja Vu

I actually didn't remember much of that pain for almost 10 years, while walking down the hall at my job.   I felt a growing pain near my tailbone and across my low back.  The pain took my breath away, and I had to stop many times.  

But I had to work, so I basically ignored the pain for several months, until it was so severe I had to pay attention.  In the doctor's appointment months later, I was asked to describe the quality and intensity of the pain.  

Was it sharp, stabbing, burning, numb? I was asked, along with other words associated with pain.  But it was hard for me to use any of the descriptions suggested.  

And that's when the analogy popped into my mind: "It's almost the same as back labor, except this pain is concentrated only in my left hip and across my low back, down to my tailbone."  

I don't think the male physician quite grasped the analogy though; He seemed unfamiliar with the kind of and quality of pain I was trying to describe and how intense back labor feels.  Rather than stabbing or burning, sharp or dull, to me back labor feels like an overwhelming crushing pain: in short, imagine an elephant standing with all its weight on one spot on your body!  My analogy though, as accurate a description as I felt I could make of the pain, was not understood by physicians.  

Fast-Forward 15 years...

I was left untreated for the next 15 years.  Every day for the last 15 years, I had to continually stop walking in order to relieve that intense pain.  A simple trip to the grocery store was more than I could tolerate.  I'd walk 20 to 30 feet and have to stop, shifting my weight from side to side while bending my knee slightly as I leaned to each side.  Since finding a chair was impossible in  stores, I'd lean forward against the handle area of the shopping cart and try to finish my shopping that way.  

Over time, I could walk fewer and fewer aisles in the store.  I started having to plan my shopping trips; On one trip, I made a "map" of what kinds of foods were in each aisle so I only had to visit those sections.  

A year or so later, I couldn't walk a full store aisle, and had to quit.  Again and again and again I sought medical help -- but was disbelieved, dismissed, and often talked to like I was just a "drug seeker" which is how doctors in my local area viewed all persons who said they were in pain.  The fact I was suffering was just ignored, along with my decreasing ability to walk and do normal activities.  

This situation continued until I finally found a doctor willing to at least treat the pain, even if the tests were supposedly negative.  Yet, even she had biases against those in pain.  On one visit when I reported that the new medication was not fully effective for the amount of pain I felt, she reacted with frustration with me -- instead of frustration that the treatment of pain is largely hit and miss.  

For several visits after that, she focused on "eliminating pain behaviors" rather than understanding that if pain is adequately treated the pain behaviors naturally as pain decreases.  For many years, I was forced to try to manage my pain with a prescription of 30 pills for 30 days [meaning 1 pill a day] of a very low-level narcotic!   This low-level narcotic is normally prescribed on a 3 to 4 hour "PRN" schedule, but I couldn't even take 2 pills in one day, or I would have to skip the next day totally!   

Finally, I found a doctor willing to treat my pain with narcotic patches (delivers medicine for 48-72 hours), plus a daily narcotic.  That helped my upper back, which by that point had become unbearable too.  But the narcotics did not do much for the hip & low back pain.  And now, 5 years after first seeing this doctor, I can barely walk.  The hip pain is so severe I scream.  And only recently has an MRI revealed the extent of the problem.  I'm being evaluated for surgery -- now that I can't walk or stand but a few minutes.  I can only hope the next treatment (or surgery) helps me!

It is estimated by one specialist that 30 to 50 million Americans suffer daily with severe pain (see Chevlen, quoted by DeLuca).  Of those, only a fraction are treated in any way for the pain they report, even after they seek treatment for their pain.  Many seek relief for years before finding a doctor willing to prescribe the necessary medications.   And of those given treatment, most are being under-treated (like being given a lower dose or fewer number of times a day than needed for the amount of pain or being given a medication not appropriate for the condition).  Many doctors remain hesitant to prescribe narcotics, or are fearful of creating a "drug addict" or reinforcing a "drug seeker."

Finally there was some progress in the treatment of pain in Ohio!  A State Representative (a politician) went through the emotionally draining experience of watching his mother die, in agonizing pain, without adequate pain control.  He set about authoring legislation to mandate the treatment of pain for every patient.  The legislation though wasn't enough for doctors to immediately change how they treated pain, and in fact, some doctors still refuse to write prescriptions for narcotics even when a person is terminally ill.   Around this time, I finally found a specialist willing to treat chronic benign (not cancer) pain.  But, by then, I was bedridden.   And still, it took another 2 years after he began treating the pain for an MRI test to finally reveal a cause for my unrelenting hip pain: "Significant foraminal narrowing" the report read (meaning a nerve was being compressed between bony structures in my hip and low back.  I'm awaiting more tests so doctors can decide if surgery can help me.  But..... now..... the pain has gotten so bad I can walk only once a day a distance of 10 to 30 feet before the crippling pain prevents me from literally taking one more step!  The intense pain takes my breath away!   My only relief is to lie down -- and that only relieves part of the pain.  

Friends tease me that I'm like the "Princess and the Pea" in fairy tale books, who had a sleepless night and became bruised from having one pea stuck under 20 mattresses.  Since developing poly-neuropathy (multiple type nerve pain), every wrinkle in the sheets, every piece of lint, every speck of dirt tracked into the bed HURTS, and I feel it!  It's worse if I've had to be up a lot one day - I suffer intensely for several days after.  Most every night, as I try to adjust the sheet and blankets "just so," without wrinkles or creases, after an hour of trying I end up crying out to God to just let me fix them just right so I can get to sleep!  When the burning poly-neuropathy is intense, there is nothing else in life - it is impossible to ignore the pain or focus on anything else.  I wish my life was as simple as the Princess's: If I could simply remove the annoying "pea" and avoid the pain, I could rest and feel normal.  But, fate has dumped a zillion specks of pain that feel like rocks and glass into my bed, and sleep rarely comes without adjusting and re-adjusting everything a million times!