Chronic fatigue syndrome and fibromyalgia are two of the most difficult diseases to diagnose. When you go to the doctor with a variety of bothersome symptoms, you hope for an answer…a definitive diagnosis, so that you can begin whatever treatment is necessary to feel better. The good news is that most illnesses and diseases can be pretty easily diagnosed with a lab workup or other testing methods.
Unfortunately, though, there are some conditions that are outliers in this regard. Their symptoms are vague or could be signs of dozens of disorders. There are no reliable tests to diagnose them. Most are misdiagnosed multiple times before an accurate finding is made. And sadly, many patients are blown off, told their symptoms are psychological or “all in their head.”
Some of the most frustrating of these diseases are chronic fatigue syndrome and fibromyalgia. And science has recently identified a common link that just might pave the way for new treatments.
Chronic Fatigue Syndrome (CFS)
CFS (also known as myalgic encephalomyelitis) is characterized by extreme fatigue that can’t be explained by an underlying condition. The fatigue doesn’t improve with rest and actually worsens dramatically with activity. In fact, some patients report being bedridden for days after engaging in exercise. Along with debilitating fatigue, other symptoms include loss of concentration or memory, intestinal issues, sore throat, muscle or joint pain, headaches, and enlarged lymph nodes.
CFS tends to affect more women than men, usually between two distinct age ranges: 15 to 20 and 30 to 35.
Potential triggers include viral infections (such as Epstein-Barr, herpes, etc.), immune system problems, or hormonal imbalances. But in reality, scientists have remained stumped and answers are hard to come by. Every seemingly exciting breakthrough has been marred by controversy and retractions. Case in point: In 2009, a study came out showing that a retrovirus dubbed XMRV plays a role in the development of CFS. But in 2011, two follow-up papers shed a great deal of doubt on this hypothesis, which led to its retraction.
Furthermore, there is no single test to confirm CFS. Doctors usually run a variety of labs to rule out other health problems before concluding that the issue is most likely CFS—making it very much a diagnosis of exclusion. There is no cure, and treatment—which includes antivirals, anti-inflammatories, and immune-modulating drugs—focuses only on symptom relief.
However, some recent research conducted at Stanford is paving the way for more answers, which will hopefully lead to better treatments. Researchers identified 17 compounds (cytokines) that are present in the blood of people with CFS. The higher their concentrations, the worse the disease’s severity. And 13 of the 17 cytokines are inflammatory in nature.
According to one of the researchers, “There’s been a great deal of controversy and confusion surrounding CFS—even whether it is an actual disease. Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.”
Interestingly, one of the inflammatory cytokines found to be elevated in CFS patients was leptin, a hormone secreted by fat tissue that tells the brain that the stomach is full so that you stop eating. Leptin is generally more abundant in women than men, which could help explain why more women have CFS than men.
Ongoing research focuses on how changes in the endocrine system could contribute to CFS, and how infections could potentially throw the immune system off balance and lead to the disease. In the next five years, researchers hope to pinpoint abnormalities in these specific systems and perhaps find genetic predispositions as well.
Fibromyalgia is characterized by widespread, chronic musculoskeletal pain (often described as a constant dull ache felt throughout the body), extreme tiredness, and trouble with focus and concentration.
Fibromyalgia is similar to CFS in that women are more likely to develop it, and there is no cure and no lab work or other test that can definitively diagnose it (another diagnosis of exclusion). Available treatments only serve to ease symptoms.
Additionally, the cause of this condition is still largely unknown. Researchers do believe that a variety of factors come into play, including genetics, prior infections, and physical or emotional trauma (such as surgery). In many cases, though, a trigger event can’t be identified.
Some research has linked fibromyalgia to nervous system dysfunction, specifically neuropathy caused by the degeneration of peripheral small-fiber neurons. Repeated nerve stimulation can lead to abnormal increases in neurotransmitters that signal pain. Moreover, the brain’s pain receptors become more sensitive and overreact to pain.
Much like CFS, fibromyalgia is a frustrating, misunderstood disease. Because there appears to be nothing physically wrong, patients’ symptoms are often disregarded or diagnosed as psychological in nature. Finding the right doctor who takes you seriously is so important.
Fortunately, strides in research are being made every day. For a long time, inflammation was not thought to play a role in fibromyalgia. But a new study shows that it may, in fact, be a key factor in this disease.
Research teams at two different institutions collaborated on this study, which used positron emission tomography (PET) scans to look for inflammation in the brain. Both centers found that, compared to controls, the brains of fibromyalgia patients had significant activation (inflammation) of glial cells—the most abundant type of cell in the central nervous system.
Another important discovery involved levels of a translocator protein (TSPO) that is overexpressed by inflamed glial cells. High TSPO levels in the area of the brain associated with emotional processing—and where inflammation is often detected in CFS patients—was noted in fibromyalgia patients who also had fatigue.
Inflammation—the Common Link
As you probably know, inflammation is involved in the development of many of our worst diseases, including Alzheimer’s, heart disease, diabetes, and cancer. While there’s still a lot to learn about both CFS and fibromyalgia, the potential link to inflammation is a big development.
While supplements don’t treat, and certainly won’t cure, CFS or fibromyalgia, there are certain nutrients that can work to reduce systemic inflammation. Two of the most effective are fish oil (the omega-3 fatty acids EPA/DHA) and curcumin. If you suffer from either of these conditions and don’t already take these nutrients, consider adding them to your daily regimen. I typically recommend 1,500 – 2,000 mg a day of omega-3 fatty acids, and 1,000 mg a day of curcumin, in divided dosages.
Even if you don’t experience much in the way of symptom relief, you at least reap the benefit of reducing your risk of other inflammatory diseases.
Other lifestyle habits that help ease inflammation include stress reduction (deep breathing, massage therapy, yoga, tai chi, meditation, etc.), following an anti-inflammatory diet rich in whole foods and low in sugar, limiting alcohol, and avoiding smoking.
- Callaway, E. Chronic fatigue syndrome: life after XMRV.
- Stanford Medicine News Center. Researchers identify biomarkers associated with chronic fatigue syndrome severity.
- Maxmen, A. A reboot for chronic fatigue syndrome research.
- Oaklander AL, et al. Objective evidence that small fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia.
- Üçeyler N, et al Small fibre pathology in patients with fibromyalgia syndrome.
- Albrecht DS, et al. Brain glial activation in fibromyalgia—a multi-site positron emission tomography investigation. Brain Behav Immun.