“The experience of pain is not just in your nervous system, it’s in your whole life. Some people with chronic pain feel that it’s taking over their life,” Mandelin says. “Low-grade pain, day after day, can drag a person down,” like an undertow when you’re swimming in the ocean.
Because Mandelin says that it may be impossible to reduce chronic pain to zero, “despite what all the TV commercials suggest,” he believes you must develop ways to adjust and cope with what may be the new normal. Plan your life around the pain, with the pain,
“It’s not so much whether you have chronic pain or fatigue or how bad they are, it’s how much of your life do you feel you control,” he says. “What’s really important is the intensity of the pain and how tired you are and what you’re doing about it.”
Never Underestimate a Good Night’s Sleep
In Mandelin’s practice, his PsA patients often report chronic pain and fatigue. He finds that while pain and fatigue can present together, they can be separate issues. So he begins at the most basic level. “What’s going on metabolically?” he asks. “Let’s get a blood count. Maybe they have anemia. Let’s do an iron study. Maybe they have an iron deficiency.”
Mandelin then moves on to sleep quality. “Frankly, as our population gets heavier and heavier, we’re running across more cases of undiagnosed sleep apnea. Fatigue can amplify your pain,” he says. Sleep apnea, he explains, is one of the components of chronic pain that’s not involved with PsA. “Successfully addressing sleep apnea won’t fix the whole world, but it can at least fix your fatigue. It won’t fix your chronic pain but it helps.”
He is an advocate of sleep studies and the use of CPAP devices; he cites the strides in sleep technology over the past few years. “Many face masks don’t even look like masks,” he says, though he acknowledges that adapting to these devices may not be easy. “You have to commit to it, grit your teeth and get through that first month. If you can start getting enough sleep, many things about your health and your overall life will improve.”
Get more advice for better sleep with our Healthy Sleep Guide.
Pain and the Brain
They don’t make pain like they used to. Just ask Daniel Clauw, M.D.
“When I was trained as a rheumatologist 30 years ago, we didn’t know anything about the role of the brain in who has pain and who doesn’t,” he says. Clauw is the director of the Chronic Pain and Fatigue Research Center at the University of Michigan and a member of the Chronic Pain Research Alliance Scientific Advisory Council.
“We thought everyone with the same diagnostic label could be treated uniformly for pain,” says Clauw. “Well, you can’t treat chronic pain based on the label. You have to ask, ‘What is the underlying mechanism that is driving the pain?’ ”
For many people, chronic pain might come from the part of the body damaged by an injury or a condition such as PsA. This is the type of pain that you can point to with your finger. But your pain might also come from the brain and central nervous system. If the pain is actually in your brain, Clauw explains, you won’t point, you’ll make a circle. And that circle could move.
Pump Up the Volume
Clauw explains we have a volume control setting that our brain uses to process pain. He gives as a metaphor the amplifier for an electric guitar.
The setting of your amplifier may have just as much to do with the pain in, say, your knee as what’s physically wrong with your knee. “People with a lot going on in their knee might not feel any pain,” Clauw says. “But other people might have a higher amp setting. The knee is not where the fundamental problem is in those conditions. The fundamental problem is the volume setting,” he says. “It makes everything seem to hurt.”
Pain that emanates from the amplifier in the brain is called centralized pain. Clauw explains it’s common in conditions involving the immune system. It’s usually accompanied by other central nervous system symptoms, such as fatigue, mood changes, sleep disorders and memory loss.
“Women on average have inherently higher volume control settings than men,” Clauw says. He estimates that chronic pain disorders are up to twice as common in women as in men.
A 2011 report called “Relieving Pain in America” backs Clauw’s claim. The report, from the Institute of Medicine, now the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine, estimated that four in 10 American adults live with chronic pain disorders – the majority of them women.