In 2006, I had a horribly traumatic fall down a set of stairs which I recently wrote about here . At the same time, I was going through a particularly painful divorce. I was emotionally, mentally, and physically worn out and beaten up. A year later, and I wasn’t feeling any better. My body and joints ached constantly. I felt like I could never get enough sleep. Someone could probably have grabbed a hold of the knots I had in my muscles. I was in a funk, depressed, and had a hard time concentrating. I thought after a year I should finally feel some relief, but it only seemed to be getting worse. What was going on?
I was fortunate that I was diagnosed fairly quickly once I visited a rheumatologist. He did the tender point examination, went over my history, and sent me for multiple tests. As one by one the tests came back negative, I felt discouraged and confused. How could there be nothing wrong and I still feel this way? I knew I wasn’t making it up. After several weeks of testing and follow-up appointments, he diagnosed me with fibromyalgia.
I was skeptical, ashamed, and terrified. I had only vaguely known one other person who said she had fibromyalgia and what I knew wasn’t good. She was bed-ridden, angry, wasting away, very obese, and had multiple health issues. While I didn’t interact with her much, those around me would speak with derision when they mentioned her fibro. They didn’t believe her, that she was making it up. It held a huge stigma for me and I didn’t want it (that’s for another post).
But now that I had it, what on earth caused it? I didn’t just wake up one day and say, “Oh, I think I have fibromyalgia because of a pain in my leg.”
What Causes Fibromyalgia?
While there is a lot of speculation about what triggers fibromyalgia, its causes have yet to be definitively identified and confirmed. Recent research has generally found that fibromyalgia is most likely a result of what scientists call central sensitization, or unusual responses in the nervous system with regard to pain perception.
“The [current] consensus is that fibromyalgia is not a problem with the muscles, joints, or tendons, but rather a problem with the central nervous system,” says Dr. Bruce Solitar, clinical associate professor of medicine in the division of rheumatology at NYU Medical Center/Hospital for Joint Diseases in New York.
While it’s easy to think that pain felt by someone who has experienced no physical damage to the body (although I had significant damage initially) might be categorized as purely psychosomatic, the sensations that a fibromyalgia patient experiences are as real as any other pain.
Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.
Fibromyalgia’s Physical and Emotional Triggers
So what causes the nervous system to malfunction in such a way? Scientists aren’t sure, but a number of conditions have been linked to the development of fibromyalgia. These include:
Infection. The Epstein-Barr virus, and the viruses that cause influenza, and hepatitis B and C have all been implicated in the development of fibromyalgia.
“These viruses may have [long-term] effects on the immune system. It’s also possible that viral particles attach to glial cells, which are cells within the brain that affect neurotransmission [and influence the pain response],” says Dr. Solitar.
Additionally, there is a well-established connection between Lyme disease (caused by a bacteria called Borrelia burgdorferi) and fibromyalgia: Some patients who have been treated for Lyme — and ostensibly recover from it — continue to experience the unusually high frequency of unprovoked pain that characterizes fibromyalgia.
Trauma. Sometimes the development of fibromyalgia is linked to physical injury, especially in the upper (cervical) spine. In other cases, it’s associated with great emotional stress , like the death of a family member or the loss of a job. The possible link between these unrelated types of trauma is the neurohormonal change that both physical injury and emotional stress can trigger. Psychological processes can change — and can be changed by — alterations in the function of hormone-regulating centers like the hypothalamus and the pituitary and adrenal glands, which in turn can affect the nervous system.
Fibromyalgia’s Other Common Threads
“Fibromyalgia has been associated with all age groups, though women between the ages of 30 and 50 have a higher incidence of the disease,” says Dr. Solitar. While this increased prevalence among younger females suggests a hormonal connection, he says it’s also possible that it’s related to diagnosis. “Women tend to [naturally] be more tender [or sensitive to pain] than men, so if you base your diagnosis on tender points, you’re likely to diagnose more women with fibromyalgia than men.”
Also, fibromyalgia often develops in multiple members of the same family, although it’s not clear if this is the result of genetic or environmental effects.
“Family members of people with fibromyalgia seem to be more tender than others,” says Dr. Solitar, “but there isn’t a lot of conclusive genetic research out there.”
In many cases, why fibromyalgia strikes is still largely unknown.
“For a lot of patients, we don’t come up with a good explanation for the development of fibromyalgia,” Dr. Solitar notes. “We all get exposed to stress regularly. And while trauma and infections do seem to be a common [fibromyalgia] theme, there are a lot of people who just slowly develop a sense of feeling poorly.”
While there is no conclusive answer yet, researchers continue to dig for the cause as well as effective treatments. My rheumatologist at the time suspected it was the combination of physical and emotional injury that triggered it. I tend to agree since that’s how the pain started. It just never got any better.
Hopefully, one day there will be answer!
How did you discover you had fibromyalgia? Do you have an idea of what caused it? What do you think is the cause of fibromyalgia?