On a Scale of 1 to 10…

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By Julie Titone

Pain is the most common reason that people see a primary care doctor. If you have chronic pain – the kind that’s stuck around for three months or more – chances are you’ve seen lots of specialists, too. 

You may dread their standard question as much as I do: “On a scale of 1 to 10, how much pain do you feel, with 10 being the worst pain possible?”

I hesitate to answer. If I say 6, will I feel like a whiner? If I say 5, will my pain be taken seriously? 

How would I know if I felt the worst possible pain? 

Are you asking me how much it hurts when I stand or when I sit?

There is value in trying to quantify pain, and many have tried to improve upon the 10-point scale. But pain can never be captured by numeric language or, for that matter, by the English language. Good doctors are less interested in numbers than in how the pain is affecting someone’s life.

This subject is on my mind because of the responses to my column, “Arachnoiditis: My Not-So-Rare Disease.” 

Readers who share my diagnosis of adhesive arachnoiditis told me they appreciated my effort to spread the word about this chronic inflammatory disease. But a few chided me for downplaying how painful arachnoiditis can become. 

Here is what I wrote: “Patients experience lower body numbness and stinging pain that, at its worst, is likened to hot water dripping down the legs. The disease can lead to paralysis and bladder dysfunction.”

I debated which words to use in that paragraph. A litany of misery might cause folks to stop reading, so I kept the descriptive list short. 

Now, in recognition of those who suffer, I will expand upon the kinds of pain reported by arachnoiditis patients:

  • Burning, stabbing, shocking, zapping

  • Buzzing, icy hot, insects crawling under the skin. 

  • Deep aching/boring in the spine. 

  • Pain radiating down the back of the legs. 

  • Vice-like pressure. Cramping. 

  • Pain that increases upon standing or sitting. 

  • Sudden flares triggered by movement. 

  • Widespread burning in the lower body. 

  • Pelvic, abdominal and bladder-related pain. 

  • Unrelenting, throbbing, exhausting pain.

As one woman wrote in an online discussion: “How much can a body take?” 

Some patients would answer that question with suicide.

What makes this all doubly sad is that arachnoiditis often begins when people seek relief, via injections or surgery, from another source of pain.

So far, my own arachnoiditis is not debilitating. I get modest relief from medicines, movement and massage. Distraction helps. If you need advice on the best ice packs and seat cushions, I’m your gal.

Chronic pain plagues an estimated 20 to 30 percent of people in the world at any given time. The cliché goes that misery loves company. I don’t love it, but that massive company could work in my favor someday.

Researchers have 2 billion reasons to investigate pain treatment and prevention. As the secrets of neural pathways are unlocked, the knowledge is bound to benefit those of us with arachnoiditis.

Julie Titone is a former newspaper journalist who also worked in academic and library communications. She is retired and lives in Everett, Washington. Julie’s website is julietitone.weebly.com.

This column first appeared in Julie’s Substack blog and is republished with permission.