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Fibromyalgia Basics

What is Fibromyalgia?

What is fibromyalgia is illustrated by this cartoon indicating that it changes all the body's controls to cause lots of symptoms.

Invisible, unpredictable, frustrating, and oftentimes torturous sums up fibromyalgia. The painful, diffuse symptoms have no boundaries and the disease robs you of restful sleep. You wake up each morning feeling like the fibromyalgia monster punched you around all night. Your muscles are stiff, your brain is dead, and you’re exhausted before the day begins.

Fibromyalgia affects every system in your body, but lab tests don’t explain your long list of symptoms. You look normal and feel awful; living with the disease is a constant struggle that others can’t see.

Feels Like the Flu

Most people with fibromyalgia describe it as a bad case of the flu that never goes away. Scientifically, evidence supports the concept that the disease resembles a chronic viral infection.

When viruses invade your body, the immune cells in your central nervous system go ballistic to protect your brain. In doing so, your neurons send pain alarms out to your muscles and other tissues. The nervous system dysfunction causes fatigue, trouble concentrating (brain fog), insomnia, and a deflated mood. It’s the very thing that lands people in bed when an infectious agent invades their body.

Research shows that these immune cells are on the rampage in people with fibromyalgia. But instead of causing symptoms for only a day or two, these cells remain in the “enraged” mode. This produces a chronic state of flu-like symptoms.

Brain imaging studies funded by AFSA document the hyperactivity of these immune cells in fibromyalgia patients.1 However, blood tests fail to detect this activity because these cells hide out in the central nervous system.

Alters Body Functions

Doctors often tell fibromyalgia patients that there is nothing wrong with them because tests do not reveal a tissue-destroying process. This is insulting given the multitude of symptoms. Yet, the absence of tissue destruction should be viewed with optimism. It may mean that researchers can reverse the processes causing this condition.

Instead of being a destructive disease, fibromyalgia impairs the way your brain and spinal cord operate. In turn, this dysfunction spills over into problems with regulating all your organ systems, such as your digestive tract, your natural stress response mechanisms, and your cardiovascular system, to name a few. It’s as though the messages entering your central nervous system become scrambled, leading to aberrant signals to all body systems.

Illustration diagram showing how genetics combined with a triggering event leads to fibromyalgia

Fibromyalgia is like having a foreign invader inside your body who changes all your control settings so nothing works correctly. Your mind can’t focus, your digestion is fussy, the blood flow to your muscles is impaired, the slightest touch hurts, bright lights and other sensory signals are overwhelming, your coordination is off, and your head constantly pounds. The long list of symptoms makes you feel twenty years older … and then some.2

What Causes Fibromyalgia?

What sets the fibromyalgia wheels in motion? Genetics plays a big role. Blood relatives of patients are eight times more likely to develop the condition.3 Genetic predisposition coupled with exposure to a triggering event causes the symptoms to surface. The most common triggers are infections, injuries, development of another disease, prolonged stress, or trauma. These events activate the immune cells in the nervous system (called microglia) and impair the body’s ability to fight pain. However, it’s still unclear how this leads to fibro.

Views on what causes fibromyalgia constantly change. Initially, researchers thought muscle inflammation caused it, but studies quickly dispelled this myth. Next, it was viewed as a disease of the central nervous system. While partly true, injecting mice with serum or gut bacteria from fibromyalgia patients causes a rapid onset of pain.4,5 This shows that cells outside the nervous system also contribute to the disease. 

Today, fibromyalgia is more than a central nervous system disease. Your digestive, metabolic, hormonal, and immune systems collude with the control centers in your brain to cause the disease. And despite its impact on all your body systems, fibromyalgia lurks in the shadows, undetectable by standard laboratory tests.

Illustration diagram showing what fibromyalgia is - a multi-system disease

Although fibromyalgia is not an inflammatory disease like rheumatoid arthritis, a more subtle form of inflammation exists. Research shows a wide variety of immune cells behave abnormally.6,7 Each of these cells can produce symptoms, but scientists are still figuring out the mechanisms that link immune cells to other processes occurring in this disease. In fact, understanding the immune system’s role in causing symptom flares is the focus of an AFSA 2024 award.

Patient Challenges

Fibromyalgia patients face several hurdles, which are summarized below.

Diagnostic Uncertainties – Fibromyalgia is diagnosed by the presence of widespread pain. Unfortunately, less than 40 percent of primary care doctors are familiar with the diagnostic criteria.8 A major pitfall of the criteria is that it relies solely on a patient’s reporting of their pain. It is not an objective process and leaves the door open to interpretation.

Credibility Issues – Half of treating physicians believe fibromyalgia is a psychosocial disorder due to poor coping skills. They do not accept that patients have a real disease. Instead, many physicians falsely assume fibromyalgia is a form of depression or that patients exaggerate their symptoms.

Speaking at the 2024 international pain conference in Amsterdam, Daniel Clauw, M.D., of the University of Michigan and the most published researcher in the field set the record straight.9 He followed over 300 young children (beginning at age 9), many who eventually developed fibromyalgia.

“The depression appears years after the development of widespread pain, rather than causing it,” says Clauw. “The same holds true for pain catastrophizing” (e.g., symptoms of anxiety and feeling stressed or out of control). “The sleep disorder comes first, followed by memory problems, pain, and then finally, depression,” says Clauw.

Lack of Funding – The U.S. government spends only 8 cents per patient on quality fibromyalgia research. Admittedly, it spends an additional 20 cents per patient on psychosocial studies that will never lead to effective treatments.10

Ineffective Treatments – Many factors contribute to the symptoms of fibromyalgia, so no single treatment approach is effective. Most medications attempt to correct part of the central nervous system malfunctions. However, they cause lots of side effects. Alternative therapies help patients cope with their symptoms and stay more functional, but nothing tames the processes that cause fibromyalgia.

Fibromyalgia Quick Facts

So, what is fibromyalgia? It affects every system in the body to cause widespread pain and profound fatigue, but no lab test can prove its existence. The symptoms resemble a bad flu; they are mind-boggling and difficult to manage. Patients face a credibility dilemma in the doctor’s office, as well as with their family and friends. They look fine but feel awful. While researchers are making progress on fibromyalgia, inadequate funding seriously hampers it.

    • Affects 3 to 5 percent of the general population11
    • Occurs in people of all ages, including children
    • Men develop fibromyalgia too, although more women are diagnosed with it
    • Symptoms are chronic but fluctuate throughout the day
    • Roughly one-quarter of fibromyalgia patients are work-disabled12
    • Three drugs are FDA-approved for fibromyalgia, but Europe does not endorse them due to low efficacy and high side effects

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Symptoms  |  Medications | Alternative Therapies |  Muscle Pain Relief  |  Fibro Friendly Exercises  

References for What is Fibromyalgia

  1. Mueller C, Younger JW, et al.  PAIN 164(10)2285-95, 2023. Free Report
  2. Guler MA, et al. Clin Exp Rheum 39(Suppl 130):S95-S101, 2021. Free Report
  3. Arnold LM, et al. Arthritis Rheum 50(3):955-952, 2004. Free Report (read only)
  4. Is Fibro an Autoimmune Disease? Based on a 2022 interview with Andreas Goebel, M.D., Ph.D.
  5. Targeting the Gut Based on a 2024 interview with Amir Minerbi, M.D., Ph.D.
  6. Russo M, et al. Pain Physician 27(8):495-506, 2024. Free Report
  7. Jurado-Priego LN, et al. biomedicines 12(7):1543, 2024. Free Report
  8. Agarwal A, et al. Medicine 103:31(e39109), 2024. Free Report
  9. Daniel J Clauw, M.D., Methodological Approaches to the Study of Widespread Pain and Fibromyalgia, IASP Workshop, August 5, 2024.
  10. Fibromyalgia Research Update, based on the most recent 2023 NIH Report.
  11. Branco JC, et al. Semin Arthritis Rheum 39(6):448-53, 2010. Abstract
  12. Fitzcharles MA, et al. J Rheumatol 43(5)931-6, 2016. Abstract