Chronic Pain – The Hidden Epidemic

Here’s a strange story: One day two summers ago, I woke up because my arms — both of them — hurt. Not the way they do when you’ve slept in a funny position, but as if the tendons in my forearms and hands were moving through mud. What felt like sharp electric shocks kept sparking in my fingers and sometimes up the inside of my biceps and across my chest. Holding anything was excruciating: a cup, a toothbrush, my phone. Even doing nothing was miserable. It hurt when I sat with my hands in my lap, when I stood, when I lay flat on the bed or on my side. The slightest pressure — a bedsheet, a watch band, a bra strap — was intolerable.

It was August, and every doctor seemed to be away on vacation. The ones I did manage to see were politely stumped. It wasn’t carpal tunnel, tennis elbow or any other injury they could identify. I did nothing unusual the day before: an hour of work on my laptop, followed by a visit with a friend. We sat in her backyard and talked.

For the first few weeks, I could barely sleep. Over the following months, I lost weight —almost a pound a week. I couldn’t drive, or cook, or use my laptop for work, or even hold a book or a pen. I would have been bored, except the pain was so tiring that I could barely function. I spent the days shuffling around the house listening to audiobooks and doing voice-to-text searches for “nerve pain arms” with my phone flat on the table, then carefully, painfully, scrolling through the results.

I think we’re past the point where I have to explain that chronic pain is not the result of imbalanced humors or a wandering uterus or possession by demons. But for more modern skeptics, this is where I should add that chronic pain also isn’t just “all in your head” or “not really that bad” — or any of the other ways in which people who suffer from it are still regularly gas lit and dismissed.

Personally, I never had to contend with not being believed, almost certainly because I’m an otherwise healthy, reasonably well-off white woman with a clean medical history and no significant record of anxiety or depression. Instead, I was taken seriously. A whole gamut of tests was run. My wrists were X-rayed. I had an M.R.I. on my cervical spine. Each new doctor ordered new blood tests: some for vitamin deficiencies, others for autoimmune diseases like rheumatoid arthritis.

But when none of those tests could point to an obvious cause, I fell into the mystery bucket. Not the fascinating, fun kind of mystery that gets solved by a medical savant. This was the other kind, in which you are punted from doctor to doctor until you run out of specialists, who, this being real life, are far too overscheduled to fixate on one patient’s oddball symptoms.

Even if they had, it’s not clear that they could have done much. The options for treating pain are limited, and almost all have drawbacks. Many medications cause fatigue or nausea. A weird number cause constipation. When I started taking gabapentin (an anti-seizure drug that reduces the signal from the brain to the peripheral nerves), I became forgetful and started confusing words — saying “phoenix” for “pheasant,” or “blue” for “green.” That would have been fine if the medication actually worked; instead, it just made things slightly less awful.

So, like many people with chronic pain, I started trying things on my own. I went to a physical therapist, a chiropractor and two different acupuncturists. I tried Feldenkrais and something called nerve flossing, a set of funky gliding arm movements, which helped a bit. When an appointment finally opened up at my local medical center’s pain clinic, six months later, the doctor there told me that this kind of unexplained nerve pain just happens sometimes, and that it might get better in months, or years, or never. That was just how it went, and no one knew why.

For a long time, I assumed that what happened to me was just bad luck. Everyone else seemed so hearty: going for jogs, typing away for hours in cafes. But what I discovered over the next year was that chronic pain is everywhere. There was the colleague who developed an autoimmune like disease after being bitten by a virus-carrying mosquito. A friend, John, who had a bad reaction to an antibiotic and ended up with disabling full-body nerve pain that lasted for years. A former student who dislocated her shoulder in a

crash and now has chronic neck pain and tension headaches. Another friend’s cousin who developed terrible pain after abdominal surgery — pain that left him incapacitated for months until, bizarrely, another, unrelated surgery caused it to disappear.

I didn’t know any of this before my own mystery ailment began, because chronic pain, like chronic illness, is mostly invisible. My friend John told almost no one during the

years he was disabled, in part because he didn’t want to be defined by his condition. My

colleague admitted that many of her co-workers would be surprised to learn that she had been working in pain for years. Altogether, according to a 2011 Institute of Medicine report, roughly 100 million Americans, almost one-third of the U.S. population, have chronic pain, more than have diabetes, heart disease and cancer combined. Globally, some studies put the number at two billion.

A good resource for addressing & treating pain can be found at

https://cindyperlin.com/.