Fibromyalgia is one of the most common chronic pain syndromes, affecting millions worldwide. Yet it is often misunderstood and misdiagnosed. Why is that?
Those with fibromyalgia have “spontaneous pain” or pain without a visible trigger. The fibromyalgia medical term “spontaneous pain” dates back to the 1900s.1 Yet, the medical community didn’t accept it until the early 1980s. In 1990, the American College of Rheumatology (ACR) submitted the first official diagnostic criteria for fibromyalgia.1 Despite this progress, misconceptions about fibromyalgia and its diagnosis still exist today.
Below, we will answer the most commonly asked questions about fibromyalgia. This information about fibromyalgia should not be used in place of your healthcare provider’s advice or recommendations. Instead, use it as a starting point for gathering basic information on fibromyalgia to help drive meaningful discussions with your healthcare provider.
What is Fibromyalgia?
Fibromyalgia is a complex chronic pain syndrome characterized by widespread musculoskeletal pain with the presence of somatic (body) symptoms.2 Unlike other chronic pain disorders, fibromyalgia has no identifiable physical trigger, such as a car accident, broken bone, or surgery.
Instead, the underlying mechanism of fibromyalgia lies in how the brain processes pain. Experts believe those with fibromyalgia have “central sensitization” to pain.1 Central sensitization involves hyperactivity of your sensory neurons.2 Neurons are messengers that carry information between your central (brain and spinal cord) and peripheral nervous system. Overactive sensory neurons can make you more sensitized to stimuli, resulting in lower pain thresholds or tolerance.2
This alteration in the central processing of pain can result in the following:
- Hyperalgesia – a heightened pain response to a normally painful stimulus, such as heat or pressure; and
- Allodynia – excessive sensitivity to non-painful stimuli, such as touch.
Heightened pain sensitivity can keep those with fibromyalgia alert, making them hypervigilant to stimuli.1 Living with chronic pain can also impact mental health. About 25% of people who are diagnosed with fibromyalgia will also be diagnosed with depression at or before their fibromyalgia diagnosis, and an even higher amount, 50 to 75%, have a history of depression.2
In the early stages of fibromyalgia, pain typically occurs in only one area of the body.2 About 25% of individuals with fibromyalgia had pain localized to their hands as one of their initial symptoms, for example, with back pain being the second most-common area of pain onset.3
Over time, fibromyalgia pain will involve other muscle groups, joints, tendons, or even ligaments.2 Fibromyalgia pain is symmetrical, affecting both sides of your body.2 The pain varies in intensity and is often described as stiffness, achiness, gnawing, soreness, or a burning sensation.2
Since fibromyalgia pain is linked to how your brain processes pain, it does not respond to many traditional pain therapies such as opioids.2 Instead, medications for managing fibromyalgia pain can be used to target numerous changes in pain processing, in order to stabilize nerve functioning, both in the peripheral and central nervous system.2
Comprehensive fibromyalgia treatment plans should also address symptoms and conditions beyond pain, such as fatigue, depression or anxiety. Holistic fibromyalgia therapy plans usually involve a combination of medication management, acceptance and commitment therapy, cognitive behavioral therapy, and incorporating movement and activity, along with other physical modalities.2
How Common Is Fibromyalgia?
Fibromyalgia is a relatively common medical condition affecting 2 to 8% of individuals worldwide.4 In the United States alone, about 10 million Americans have fibromyalgia.
Determining the exact prevalence of fibromyalgia is difficult due to varying diagnostic criteria and symptom overlap with other medical conditions. Because of this, some individuals can go undiagnosed or even receive a misdiagnosis of fibromyalgia.
Fibromyalgia can affect anyone regardless of their age, gender, or ethnicity. It is more commonly diagnosed in women than men, at a ratio of 3:1.5 In other words, for every three women diagnosed with fibromyalgia, one man will also receive the diagnosis. Experts believe this difference in gender can be attributed to sociological perceptions of how women and men experience pain; behavioral changes due to pain; and hormonal effects related to the menstrual cycle.4
Fibromyalgia can be diagnosed at any age, including in children. An estimated 1 to 6.2% of children worldwide have fibromyalgia.5 Your risk of developing fibromyalgia increases as you get older until you reach 80, when your risk decreases. Most are diagnosed between the ages of 30 and 50.5
Individuals with fibromyalgia tend to have a higher body weight than those without fibromyalgia.3 Obesity may impact the severity of fibromyalgia symptoms, particularly pain intensity, sleep, and physical strength, but the quality of the evidence supporting this link varies depending on the study.5
What Causes Fibromyalgia?
Fibromyalgia is a complex, multifactorial syndrome, making it hard to determine an exact cause. A 2016 study conducted with twins suggests the development of fibromyalgia is partly related to your genes and partly related to your environment.6
Those with a first-degree relative with fibromyalgia are eight times more likely to be diagnosed with fibromyalgia, further supporting the case that fibromyalgia has a genetic component.5
While the exact genetic link has yet to be discovered, current research suggests this genetic component may be a genetic change related to the neurotransmitters in your brain.4 Neurotransmitters broadcast and receive pain signals, and having a genetic mutation in the genes that form neurotransmitters would change how your brain sends and receives these signals.
Risk Factors
While the exact causes of fibromyalgia remain unclear, certain risk factors increase your chances of developing fibromyalgia, including:
- Chronic illnesses: Having certain medical conditions greatly increases your likelihood of also developing fibromyalgia. These chronic illnesses include irritable bowel syndrome (IBS), anxiety, depression, obesity, and autoimmune disorders like rheumatoid arthritis, amongst others.3
- Medical illness (infections): Some infections, such as Epstein-Barr, Lyme disease, COVID-19 or HIV, may trigger fibromyalgia. But more evidence is needed to fully determine their role.
- Stress: Chronic stress is often associated with the development of fibromyalgia. Experts believe long-lasting stressors can increase cytokine levels.6 In turn, this may activate pain points and peripheral sensitization.6 Cytokines are part of your immune system and control immune system cell growth and activity.
- Trauma: There is a strong correlation between fibromyalgia and physical or emotional traumas. One study found that a fibromyalgia diagnosis was highest among U.S. active duty servicemen who were also seeking treatment for post-traumatic stress disorder (PTSD).3
What are Fibromyalgia Symptoms?
Besides widespread musculoskeletal pain, those with fibromyalgia can experience a range of other symptoms, such as:
- Muscle and joint stiffness
- Sleep difficulties
- Cognitive changes such as disorganized or slow thinking
- Fatigue
- Forgetfulness
- Mental health challenges, including anxiety and depression
- Difficulty with concentration
- Headaches, including migraines or tension headaches
- General sensitivity to various stimuli
While less common, the following symptoms are also associated with fibromyalgia:
- Tingling sensation or numbness in hands and feet
- Pain in the jaw or face
- Digestive issues leading to stomach pain, constipation, bloating, or irritable bowel syndrome (IBS)
These symptoms can significantly impact one’s ability to carry out their daily activities. This can result in a lower quality of life, and feelings of loneliness, isolation, or depression.
Experts suggest that chronic pain seen in fibromyalgia often begins during childhood.5 Adults with fibromyalgia tend to have a childhood history of headaches, IBS, or endometriosis, amongst other medical conditions.5
Fibromyalgia Flare-ups
Even with effective fibromyalgia management, individuals may experience flare-ups of their symptoms. While everyone’s triggers are different, stress is commonly identified as the primary factor.
Stress comes in all forms, physical or emotional, and can be related to:
- Your work or home life
- Hormonal changes such as during menstruation
- An infection or illness
- Starting a new diet
- Changes in your daily routine
- Adjusting your fibromyalgia treatment plan
- Seasonal changes in the weather or temperature
How is Fibromyalgia Diagnosed?
Diagnosing fibromyalgia provides some challenges due to the changes in diagnostic criteria used over time, and the fact that other medical conditions share similar symptoms with fibromyalgia. In the average experience, receiving a fibromyalgia diagnosis takes over two years and often involves visiting three or more healthcare providers.5
During your appointment, your healthcare provider will take a detailed medical and personal history, which may include details of childhood or past traumatic events. In addition to your medical history, your healthcare provider will ask about your symptoms, including ones related to:5
- Deep aching sensations that affect your body
- Your balance
- Environmental sensitivity
- Tenderness to touch
- Pain after exercise
Focusing on these five symptoms increases the likelihood of an accurate diagnosis.5
Diagnostic Criteria
Although different diagnostic guidelines have been proposed for fibromyalgia, a 2021 study compared the diagnostic accuracy of three available diagnostic criteria. The American College of Rheumatology (ACR) 2016 diagnostic criteria had the best diagnostic accuracy rates;7 a 2022 review drew a similar conclusion.8
The 2016 ACR diagnostic criteria includes several diagnostic assessments that your provider will use. These include:1
- Widespread pain index (WPI): This index counts the areas where you have experienced pain in the past week.
- Symptom Severity (SS) scale: This scale looks at the severity of somatic fibromyalgia symptoms such as cognitive impairment and fatigue.
In addition to scores on the above assessments, fibromyalgia symptoms must be present for at least 3 months to meet the ACR diagnostic criteria.
Your healthcare provider will apply all the fibromyalgia patient information collected to the diagnostic criteria to determine a fibromyalgia diagnosis.
Determining Severity
Your healthcare provider may also ask you to fill out a fibromyalgia questionnaire, such as the Fibromyalgia Impact Questionnaire or the Polysymptomatic Distress Scale.1 These questionnaires help assess the severity of your fibromyalgia. Generally, a higher score means a more severe condition, although this can vary based on the specific questionnaire.
Your healthcare provider may use these questionnaires at the time of diagnosis or throughout your treatment course to assess how well your therapies are working.
Blood Tests
Unfortunately, no blood test aids in or confirms the diagnosis of fibromyalgia. However, several medical conditions share similar symptoms with fibromyalgia. So while blood tests can’t help diagnose fibromyalgia, they may help diagnose other medical conditions that may be causing or contributing to these symptoms.
Keep in mind: A diagnosis of another condition does not mean you don’t have fibromyalgia. Fibromyalgia can co-exist with other medical conditions.
Where to Find More Information on Fibromyalgia
Fibromyalgia is a complex chronic pain syndrome, and as we learned, it can take years to diagnose.
Working with a fibromyalgia specialist increases your odds of an accurate diagnosis and effective management. At Swing Care, our team of healthcare providers stay up-to-date on the latest fibromyalgia research, providing you with personalized science-based care. Our treatment approach includes:
- Prescription medication management
- Behavioral therapies, like acceptance and commitment therapy
- Physical treatments and recommendations
If you are wondering if you have fibromyalgia, take Swing Care’s free fibromyalgia assessment to learn more.
For more fibromyalgia facts and information, the following websites are excellent resources for all information about fibromyalgia, including symptoms, treatments, and coping strategies.
- National Institute of Arthritis and Musculoskeletal, and Skin Diseases
- National Fibromyalgia Association
- National Center for Complementary and Integrative Health
Medically reviewed by Dr. Andrea Chadwick, MD, MSc, FASA
Sources
- Galvez-Sánchez CM, Reyes Del Paso GA. Diagnostic Criteria for Fibromyalgia: Critical Review and Future Perspectives. J Clin Med. 2020;9(4):1219. doi:https://doi.org/10.3390/jcm9041219
- Kaltsas G, Tsiveriotis K. Fibromyalgia. [Updated 2020 Jan 14]. In: Feingold KR, Anawalt B, Blackman MR, et al., editors. Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK279092/
- Giorgi V, Sirotti S, Romano ME, Marotto D, Ablin JN, Salaffi F, Sarzi-Puttini P. Fibromyalgia: one year in review 2022. Clin Exp Rheumatol. 2022;40(6):1065-1072. doi: https://doi.org/10.55563/clinexprheumatol/if9gk2
- Siracusa R, Paola RD, Cuzzocrea S, Impellizzeri D. Fibromyalgia: Pathogenesis, Mechanisms, Diagnosis and Treatment Options Update. Int J Mol Sci. 2021;22(8):3891. doi: https://doi.org/10.3390/ijms2208389
- Arnold LM, Bennett RM, Crofford LJ, et al. AAPT Diagnostic Criteria for Fibromyalgia. J Pain. 2018;20(6). doi:https://doi.org/10.1016/j.jpain.2018.10.008
- Markkula RA, Kalso EA, Kaprio JA. Predictors of fibromyalgia: a population-based twin cohort study. BMC Musculoskelet Disord. 2016;17:29. Doi: https://10.1186/s12891-016-0873-6
- Kang JH, Choi SE, Xu H, Park DJ, Lee JK, Lee SS. Comparison of the AAPT Fibromyalgia Diagnostic Criteria and Modified FAS Criteria with Existing ACR Criteria for Fibromyalgia in Korean Patients. Rheumatol Ther. 2021;8(2):1003-1014. doi: https://doi.org/10.1007/s40744-021-00318-8
- Kang JH, Choi SE, Park DJ, Lee SS. Disentangling Diagnosis and Management of Fibromyalgia. J Rheum Dis. 2022;29(1):4-13. doi:https://doi.org/10.4078/jrd.2022.29.1.4