June 13, 2023 – In 1993, Lynne Matallana was living a “wonderful life.” Newly married, the 38-year-old Californian was a partner in an advertising agency. But her life was upended after surgery for endometriosis.
“I actually woke up during the surgery, and the next day, I developed excruciating pain – beyond excruciating – and became bedridden,” she said. The pain brought along insomnia, inability to eat, and debilitating exhaustion. “It was totally life-altering, and I had no idea what happened.”
Matallana spent the next 2 years “going from doctor to doctor” before finally being diagnosed with fibromyalgia. “It was a relief to have a diagnosis and finally have a name for what was happening to me, and I’ve heard many other people say the same thing,” she said.
Still, she said, this was “back in 1995, and not much was known about fibromyalgia, and the doctors basically said there was nothing they could do for me.”
Pain and the Brain
Unfortunately, Matallana’s story is typical. Although fibromyalgia is quite common, affecting more than 5 million Americans, it continues to be misdiagnosed and misunderstood. In fact, the average time for a patient to get diagnosed with fibromyalgia can be as much as 5 years.
Fibromyalgia may be caused by physically or emotionally stressful events, including a serious injury, car accident or certain viruses. Women are more likely to get fibromyalgia. Its symptoms include extreme fatigue, trouble concentrating and remembering (sometimes called “fibro fog” or “brain fog”), insomnia, nervousness, and depression. Pain (typically in the muscles and joints) is one of the hallmark symptoms.
And because pain is a subjective experience – no one can feel the pain of another person – some health care professionals haven’t taken the symptoms seriously. Many patients diagnosed with fibromyalgia by a rheumatologist or pain medicine specialist say they had been told by another health care provider that “Fibromyalgia doesn’t exist.”
Hopefully, this trend is beginning to change, as more research finds “objective” ways to identify the pain that comes with fibromyalgia.
In a recent study, researchers used MRI data to explore the brain regions involved in pain processing and emotional assessment and found that in patients with fibromyalgia, these areas undergo changes. The changes affect the size of the gray matter in the brain, which contains neurons, and also the white matter, which mainly consists of fiber connections whose job is to transmit signals between nerve cells.
The researchers compared MRI data from 23 women with fibromyalgia and 21 healthy people.
“One of our aims was to determine if there are variations in the direction of water molecule diffusion in specific brain areas; in other words, whether we can detect any regional distinctions in signal transmission,” lead study author Benjamin Mosch, a PhD candidate at University Bochum in Germany, said in a news release.
The researchers found changes in the volume of gray matter within the brain’s pain network. “We discovered a reduction in gray matter within specific regions responsible for pain inhibition in patients, compared to healthy controls. The volume of these regions was significantly diminished in patients,” Mosch said.
Alterations were also found in signal transmission in the thalamus – a brain region known to play a central role in pain processing. The differences in white matter between patients and healthy controls suggested that there were modifications in the pain signals in people with fibromyalgia.
Also, the researchers investigated how these structural brain changes relate to the perceptions and behavior of the people in the study. They found that the more loss of volume in certain brain regions, the more pain people with fibromyalgia experienced.
Brain Changes Can Be Reversed
When the researchers analyzed the relationship between symptoms of depression or activity levels and volume change in certain brain areas, they found that the volume of a region called the putamen was smaller in in those with more symptoms of depression but larger in those with higher activity levels.
“This suggests that brain changes may not be permanent but can be influenced – in other words, they may be reversible, for example, through an active daily life,” Mosch said.
These findings are neither “new nor surprising,” Daniel Clauw, MD, a professor of anesthesiology, rheumatology, and psychiatry at the University of Michigan, said in an interview.
The brain changes “are not permanent – these parameters often become more normal with effective therapies,” said Clauw, who is also the director of the university’s Chronic Pain and Fatigue Research Center.
He said certain medications – including some antidepressants, called selective serotonin-norepinephrine reuptake inhibitors (SNRIs), and gabapentinoids, used to treat shingles, restless legs syndrome, and seizures – as well as nondrug therapies, such as education, exercise, and cognitive behavioral therapy, are helpful for fibromyalgia and may help reverse some of the brain changes.
Matallana, who is the co-founder and director of the National Fibromyalgia Association, said that although the study may not contain dramatically new findings, “when it comes to research about pain, people really have to hear the same things over and over again before the medical system decides that pain is something real.”
For her, “the study is one more step toward continuing to prove that people with fibromyalgia have a real biological basis for their pain and you can actually see changes on their MRI.”
Even more important, “the study shows that some of these changes are reversible, which is especially important because people need to know that they won’t just keep getting worse and worse over time and never have quality of life again,” said Matallana, who is the author of the book The Complete Idiot’s Guide to Fibromyalgia.
Today, Matallana continues to have some symptoms of fibromyalgia, such as extra sensitivity to sound and smell, as well as problems sleeping. “It’s clear that my central nervous system is much more sensitive that other people’s,” she said. Encouragingly, she no longer has full-body pain.