Or worse, “You just have chronic pain.” This was what a rheumatologist, one of the rotating team of doctors I see these days, told me recently. The reason? My hands hurt even though my lab tests looked fabulous and there was no visible swelling or redness in my joints. This doc didn’t know why, so he said, his frustration with me plain in his voice, “You just have chronic pain.”
Ah. Well. That explains everything.
I get it, OK? Rheumatoid disease is often mystifying, and this doctor was mystified. But when he told me that the reason I was in pain was that I “have chronic pain,” instead of just admitting that he couldn’t pinpoint the reason for it, we stepped into a new realm of patient-doctor interactions: the faux diagnosis. According to him, the pain I cope with frequently in my hands, wrists, ankles, and feet these days isn’t because RD is attacking my joints. Instead, it’s this new-ish condition, “chronic pain,” and it has a far more amorphous and, in some ways, frightening source than my RD. It’s coming from my brain.
Or (just whisper this) it’s all in my head.
By telling me I have chronic pain, this doctor casually dismissed my suffering as un-real and therefore, beyond his ability to treat. Although I left his office that day with a prescription for a new biologic medication to take along with all my other prescribed DMARDs, I also left feeling extremely low. I had become one of those baffling “chronic pain” patients in a practice that no longer treats “pain,” even though it’s one of the main symptoms of rheumatoid disease. Patients with pain have to see a pain specialist.
The stigma that hovers around the words “chronic pain” is devastating.
Here’s why. They appear frequently along with the government-sanctioned and hyped scare-words “opioid crisis.” If you take opioid pain medications to keep your “chronic pain under control,” you’re an addict. That’s how the general person on the street perceives you. You’re a junkie who maybe abuses your prescription opioid meds, or who maybe sells them on the street, or who maybe haunts emergency rooms for free-of-charge “fixes,” or who maybe “doctor shops” or who maybe uses multiple pharmacies to get your illicit drugs. Ultimately, you probably use heroin, buying it on the street and shooting it up. You’ll likely overdose or get one of those random, terrifying, deadly fentanyl doses. You’ll be dead, soon. Society can do without you anyway, you useless freeloader.
Harsh? Yes. But if you take prescription opioids to control your pain, that’s the widespread public perception.
The words “chronic pain” imply that people who suffer long-term pain—for whatever reason—are imagining it. That it’s not real. Or worse, they’re faking their pain. After all, how can we know if it’s real or not?
The mind-body connection is a fact. Our brains generate the sensation of pain—no matter what type, acute or chronic—in reaction to nerve stimulus. Acute pain—the type caused by an injury—lessens and fades with time as the injury heals. Chronic pain, on the other hand, sticks around long after the injury has healed. Sometimes it never goes away.
Acute injuries aren’t the only source of long-term pain, however. Inflammatory musculoskeletal diseases like rheumatoid disease, ankylosing spondylitis, psoriatic arthritis, and lupus, etc., cause continuing attacks on the joints in the form of flares. It’s like the joints are constantly being injured, often without an opportunity to heal.
And there’s the rub. When a doctor tells a patient with rheumatoid disease or AS that they “just have chronic pain,” they’re using weasel words. It’s a betrayal of the first order. Because this pain isn’t the amorphous, inexplicable pain associated with long-healed back injuries or the still mysterious fibromyalgia. The underlying disease causes this pain—and it often manifests in spite of “good” labs and a lack of visible signs, like swelling or redness.
Now, I get the concept of pain generated by inexplicably hyperactive nerves that send false distress signals to the brain. This is real. And I get how alternative pain relief methods like meditation, physical therapy, exercise, acupuncture, etc. can help to relieve it, or at least to keep it under a modicum of control. I can even—reluctantly, I’ll admit—accept that the pain I feel almost every day in my hands might be of this type: amorphous, maybe even imaginary, caused by hyperactive nerves. But to have a doctor use the weasel words “chronic pain” to my face without offering any further explanation--or even hope—is a dismissive slap in the face.
And I’m still reeling from it.
When was your last flare?