The Widespread Pain of Fibromyalgia
For the amount of information the medical community doesn't yet know about fibromyalgia, there's still a lot it does know. For instance, the condition causes pain all over the body, sleep issues, fatigue, and emotional and mental problems. People with fibromyalgia may suffer from abnormal pain perception processing and extreme sensitivity to pain.
"Fibromyalgia is a chronic disorder that causes muscle pain, joint pain and stiffness throughout the body," said Marc Werner, fatigue specialist and CEO of GhostBed, a mattress company based in Plantation, Florida. "It's commonly categorized as an autoimmune disorder, although this isn't actually correct. However, the symptoms may overlap or run concurrently with autoimmune disorders like rheumatoid arthritis and hypothyroidism."
Fibromyalgia can also affect the sexual health of both women and men, including:
- Arousal difficulties
- General disinterest in sex
- Genital pain
- Low sex drive
- Orgasm issues
- Vaginal dryness
Pain as a primary symptom
"Pain is like the oil light on our body's dashboard saying that something needs attention," he noted. "Just like putting oil in a car makes the oil light go out, you give the body what it needs to make the 'pain light' go out. We are able to get most of our patients pain-free where we optimize sleep, hormones, immunity, nutrition and small amounts of exercise as able."
While genetics and environment are thought to be players, there's a neurological trigger behind the condition.
"[Fibromyalgia] represents a human energy crisis that trips a circuit breaker called the hypothalamus," Teitelbaum said. "It can be caused by anything that drains more energy than you can make, including countless infections, illnesses and stresses. The hypothalamic circuit breaker, that goes offline, and fibromyalgia controls sleep, so you get this paradox of insomnia and exhaustion, brain fog and widespread pain, and that clinches the diagnosis."
Underlying mental health issues
Based in Fort Wayne, Indiana, Jeffrey Gladd, M.D., is the chief medical officer at Fullscript, a digital health platform, and founder of GladdMD Integrative Medicine. He said fibromyalgia is at least correlated with—if not potentially caused by—preexisting issues with mental health.
"There is a prevalence of several psychiatric conditions among individuals with fibromyalgia, including depression, anxiety, obsessive-compulsive disorder [OCD] and post-traumatic stress disorder [PTSD]," he added. "Due to the complexity of the interaction between the mind and body, I have also seen many patients where it seems the mental health concern led to the symptoms of fibromyalgia."
If we understand fibromyalgia as a possible response to trauma, we can acknowledge mental and emotional healing generally isn't linear. Similarly, Teitelbaum explained that while there are noted trends in fibromyalgia, the disorder doesn't exactly progress in stages like most illnesses.
"Onset of the condition varies widely from person to person," he said. "About half of the people have a sudden onset with severe symptoms beginning after infection or severe stress or head injury. The other half tends to have a milder onset, suggesting triggers such as underlying immune conditions, such as rheumatoid arthritis or lupus, hormonal issues even with normal testing or low-grade chronic infections. Whether the onset was sudden or gradual gives important clues to the underlying problems that need to be treated."
Fibromyalgia by the numbers
According to the Centers for Disease Control and Prevention (CDC) and other sources, fibromyalgia is believed to affect anywhere from 2 percent to 6.4 percent of the U.S. population, or 4 million to 10 million Americans. The condition occurs in women at a rate of 7.7 percent and in men at a rate of 4.9 percent.
The most useful statistics might be ones dealing more directly with an individual's experience. In research published in 2003, fibromyalgia symptoms were grouped and tracked in frequency, indicating 52 percent of participants experienced moderate levels of anxiety and depression, moderate pain response and control over pain, the highest threshold for pain of all fibromyalgia sufferers, and moderate to low tenderness.
Almost one-third of patients reported the highest levels of anxiety and depression, reactions to pain that acutely amplify distress, low control over pain and considerable tenderness. The remaining 16 percent of the patients demonstrated the lowest levels of anxiety and depression, the highest control over pain in ways that don't amplify distress, the lowest pain thresholds and the highest levels of tenderness.
A promising statistic from a 2021 study co-authored by Teitelbaum was that among 188 participants with fibromyalgia and chronic fatigue syndrome, 60 percent reported improvement after taking 100 to 400 milligrams of red ginseng root powder daily. The group that improved reported an average 67 percent increase in energy, 72 percent increase in stamina, 48 percent improvement in mental clarity and 33 percent decrease in pain.
Speak up for yourself
Advocating for yourself is especially important if you suspect you may have fibromyalgia because you may not receive the diagnosis you need during your first medical visit. A study published in 2007 indicated one-fourth of survey participants met with more than six healthcare providers before being diagnosed with fibromyalgia, and 46 percent visited three to six providers before getting their diagnosis.
An observational study carried out in Canada and published in 2018 suggested that generalist doctors have relatively poor knowledge of the American College of Rheumatology 1990 and 2010 diagnostic criteria for fibromyalgia. Lead author of the survey, Dinesh Kumbhare, M.Sc., Ph.D., associate professor and clinician scientist in the medicine department at the University of Toronto, spoke to the publication Pain Medicine in November 2021.
"Physicians do not have adequate and homogeneous knowledge of the fibromyalgia diagnostic criteria," he said in Pain Medicine. "Approximately half of physicians did not adhere to the criteria. Poor knowledge and adherence…may increase diagnosis delays and misdiagnoses."
Correctly diagnosing fibromyalgia can only occur when a patient has tested negative for all overlapping symptoms, including anemia, autoimmune diseases of the connective tissue, hypothyroidism, multiple sclerosis, rheumatoid arthritis, small-fiber polyneuropathy and more.
A study published in 2019 was based on 121 candidates out of a pool of 497 who satisfied the fibromyalgia criteria. Physicians failed to identify 60 criteria-positive patients (49.6 percent of the 121) and incorrectly identified 43 criteria-negative patients (11.4 percent of the 497).
Medical professionals should be trusted more often than not, but it's important to trust your instincts and lived experience, too. If a checkup leaves you feeling unheard, you may want to pursue a second opinion.