Helping patients with chronic pain, fibromyalgia, and long COVID

When someone feels pain in their elbow or their knee, it’s often because there’s an injury in that region of the body. But for patients living with chronic pain conditions like fibromyalgia, researchers are focused on pain that seems to originate from the central nervous system. Daniel Clauw (M.D. 1985) is the director of the Chronic Pain and Fatigue Research Center at U-M and professor of anesthesiology, of internal medicine, and of psychiatry at the Medical School. He talks with us about misconceptions and treatments of fibromyalgia and chronic pain and how physicians can best help patients living with these conditions.

What is nociplastic pain?

This type of chronic pain seems as though the central nervous system is amplifying or augmenting the pain. People with nociplastic pain will find lights to be brighter and noises to be louder. They’re more sensitive to any sort of sensory information. We can see this on brain imaging scans. If you give them a visual stimulus, they’ll code that as being much more intense than someone who doesn’t have this kind of pain. These people not only experience pain but also suffer from fatigue, sleep problems, memory issues, and mood disorders.

What are some misconceptions about fibromyalgia and chronic pain?

The first one would be that the primary problem is psychological. Many people with fibromyalgia or chronic pain can develop psychological problems like anxiety and depression, but we think that in many instances this occurs because of the pain. We published studies which bore that out. We’ve been mining the Adolescent Brain Cognitive Development (ABCD) Study for pain-related findings. It’s funded by the National Institutes of Health and looks at 8,000 healthy children starting at age 9 or 10 and follows them until they’re 18. One study showed that the kids who have anxiety and depression are not any more likely to develop pain, but they do develop anxiety and depression after they develop pain. They had functional brain scans when they entered.

What would be helpful for other health care providers who are not pain specialists to know about treating patients with chronic pain?

Providers, especially people who are seeing younger individuals, need to treat pain symptoms more aggressively. Don’t wait until they’re age 45 when they have fibromyalgia, or when they have pain all over because then they have developed all these other comorbidities. They become physically inactive. They become very depressed, and then it’s really hard to get them better. My biggest plea to primary care physicians is to give people a body map. For any chronic pain patient who comes in, the first time you see them you should give them a body map and ask them to put marks in all the different places that they have had pain. If someone fills that out and you see that they have multiple locations of pain, they almost certainly have nociplastic pain. Maybe they have a little injury, but it’s not the injury that’s causing the pain. It’s that everything is so amped up that things hurt in them that wouldn’t hurt someone without this type of pain because their central nervous system is on fire.

What happens when chronic pain goes untreated?

One of the biggest problems of fibromyalgia is that we wait too long to start treating it, and this results in people accumulating a lot of psycho-social problems. We just hope that over time, as people understand this kind of pain is very legitimate, doctors start to look for it and look at it as a therapeutic opportunity. The analogy that I use is, if we diagnose someone with rheumatoid arthritis or lupus and we don’t treat it for the first five years, there’s likely a lot of damage that’ll occur in that person. The same damage [can occur with] chronic pain.

What are currently the best treatments for chronic pain?

There are some drugs that can be helpful, but they are not great. The first thing is to stay away from opioids and use centrally acting non-opioid analgesics like tricyclic drugs, SSRIs, or gabapentinoids. There are three drugs approved by the FDA that are known to work in the central nervous system and can help turn down the volume control: duloxetine, pregabalin (gabapentinoid), and milnacipran (norepinephrine, serotonin reuptake inhibitor). We also sometimes use drugs that help improve sleep, because we know that poor sleep is a big contributor to this kind of pain. Our team at U-M is also doing a pilot study investigating psilocybin therapy for fibromyalgia.

Having said all that, our mainstay of therapies for this kind of pain are non-pharmacologic. Some individuals may also benefit from cognitive behavioral therapy tailored to address psychological factors. The drugs are often a chemical nudge. They can help with the really annoying symptoms and make it easier to do non-drug therapies like physical therapy, exercise, yoga, Tai Chi, mindfulness, and meditation. The term we’re now using is integrative because it includes a lot of the therapies that used to be labeled as complementary or alternative, and those terms are sort of dismissive. Studies have shown they work at least as well as the drugs, but with fewer side effects.

Long COVID has been linked to chronic pain conditions. How does it fit into this?

We see similarities between long COVID and nociplastic pain. We’ve recently published some things that show that anyone with one of these chronic, overlapping pain conditions like fibromyalgia or irritable bowel syndrome is much more likely to develop long COVID if they got COVID-19. They are also much more likely to develop something similar if they got influenza. It’s not specific to COVID-19. 

Additionally, for legitimate rea- sons, patients would prefer a label that indicates some sort of organic damage. Fibromyalgia certainly has infinitely more credibility now than it did 10 or 20 years ago, but someone with chronic pain may still get more attention if they say they have long COVID rather than fibromyalgia.