Every week I take questions from readers on Facebook, live. I can't keep up in real time, and then questions keep coming in for days after, which makes me feel terrible. So, when I can, I go back and address those that seem like they'd be helpful to others, and some answers I post here. They aren't newsletters, and only exist on this page.
A reader asks, (lightly condensed for length and clarity):
I'm sorry to hear this. You're asking the right questions. Your situation is far from rare. Millions of hours are spent each year trying to track down causes of chronic pain like you describe. It can be maddening. The problem is often that the premise is wrong.
Any time pain is radiating down a leg (or an arm, or anything else), it's a problem with a nerve. It's misfiring. You're having pain in your ankle or toe, even though they're clearly fine, and the surgery was in your pelvis.
But just as that pain is clearly real—even while nothing is assaulting your toe or ankle—it's also possible that nothing in your pelvis is physically assaulting a nerve there. At least, not at a scale that can be detected by modern medical imaging. The problem can be too fine for us to see, but no less real.
I'm getting ahead of myself. To start at the top ...
First, I always recommend that patients get second and third opinions—if a person has the opportunity to get them—in cases where any diagnosis (or lack thereof) feels inadequate or unclear. You wouldn't just trust the first google result that pops up when you have a serious problem, and nor should you feel uneasy about consulting multiple expert sources. As a journalist, that's a requirement. Your trust in the assessment and plan is vital. Any good doctor would welcome a patient bringing further expertise to bear rather than proceeding with serious doubt. Especially in cases where no treatable cause is apparent.
That said, it's important to set expectations appropriately. Modern science barely understands pain. Anyone who tells you otherwise is selling something. There is often "no explanation." This doesn't mean an explanation doesn't exist; only that human knowledge doesn't yet exist to explain it.
From my distant vantage, it's likely that a second or third opinion would tell you the same thing as the first. The medical system has somehow given people the impression that pain has a distinct, visible cause. It very often doesn't. Many people experience chronic pain whose origin cannot be tied to any macroscopic physical cause.
The bigger point about chronic pain is that its origin is very often undetectable by modern medicine's current tools. This does NOT mean that it's not real. (I used all the font options available to emphasize that.) By definition, pain is a sensation that only the person experiencing it can describe or quantify. Not unlike like sadness or doubt or fatigue. Sometimes there's a clear explanation. Sometimes no one can explain it. But no one can tell you that the experience isn't real.
This is the premise that creates so much pain on top of pain. CT scans, blood tests, EKGs, etc, are very often totally normal. Yet the pain is real, and no cause can be understood.
The salient example is phantom limb pain. People who've had limbs amputation are known to experience excruciating pain in an arm or leg that they very well know is no longer adjoined to their body. As best it can be understood, the nervous system is misfiring. The issue is (obviously) not to be found in the absent limb, but in the neural pathways between the limb and brain. And again, this does not mean the pain is not real.
By contrast, there are also people whose pain-detection systems are set falsely low. They can put their hand on a hot stove and not realize until they smell something burning and realize it's them. Pain is an adaptive mechanism that helps us know when our lives are in danger. It's not perfect. And our evolutionary bias is to have more false alarms (pain despite clear cause) rather than false assurances (no pain but serious physical harm underway).
In cases involving the latter, there is essentially a disconnect between observable reality and what the nervous system is detecting. A small group of researchers have looked at novel ways to reconcile that, including using virtual reality and mirrors to help "reprogram" people's perceptions of their bodies in hopes of, essentially, pressing a restart button on the neural system. Just last month, Helen Ouyang wrote a feature for The New York Times magazine on VR if you'd like to read more. (Though, TLDR, this is all still very preliminary, hypothetical, and not widely available. I'm not suggesting you do it; only that the reading might be of interest.)
I could also recommend Atul Gawande's classic New Yorker story on using mirrors to treat chronic itch. (Some people suffer ongoing itch in the same way other experience ongoing pain.)
Let me know what you find. Remember you're not alone, and what you perceive is reality. Inability to explain it isn't your fault.
If you have a question that might be useful to share, feel free to email or message me. I can't get to them all and probably can't tell you more than your doctor, but I'll do my best.
