For a health condition that can be so challenging to live with, fibromyalgia is often maddeningly hard to diagnose. This complex package of symptoms usually includes widespread pain, chronic fatigue, memory and mood issues. Here, an inside look.
Unlike many diseases of organs like the heart, lungs or liver, fibromyalgia can’t be diagnosed with a blood test. The symptoms can wax and wane, and it can present very much like other conditions such as rheumatoid arthritis or Lyme disease.
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Fibromyalgia is not uncommon, affecting between 2 and 4% of Americans, and is found more often in women than in men.
Since the onset of the global pandemic, fibromyalgia may be even more widespread as some COVID-19 survivors are developing symptoms, says Rajat Bhatt, MD, a rheumatologist at Prime Rheumatology in Pearland, Texas. “Many COVID-19 survivors are experiencing joint pain, fatigue, and mental fog,” he says. “These symptoms can last for a long time. Some experts are saying that fibromyalgia actually may affect up to 10% of COVID-19 survivors.
Fibromyalgia is not an autoimmune disorder, but it can make you feel achy and sore all over, just like autoimmune disorders such as lupus or rheumatoid arthritis. It can be a diagnosis of exclusion because other health conditions need to be ruled out first
If you have fibromyalgia, there are medications and a variety of other therapies that can help you feel better and improve your quality of life. So just what are the symptoms?
Pain Without Swelling: A Distinguishing Symptom
People with fibromyalgia deal with widespread pain that may come and go. The key word here is “widespread,” meaning that it happens on both sides of your body and above and below your waist.2
One day, you may be totally fine and pain-free. But the next day, you can feel as if all your muscles, ligaments, and tendons are hurting. People with fibromyalgia can experience their pain as a constant dull ache. For a diagnosis of fibromyalgia, the discomfort must have lasted for at least three months.
Some people experience numbness and tingling, almost like a pins and needles sensation, in their muscles. Others may feel pain in response to a light touch such as the mild pressure of clothing. This type of pain, called allodynia, is rare to experience except in a handful of health conditions—including fibromyalgia.
There also could be pain that migrates around your body or that feels intense and almost stabbing. Another type of pain that is common with fibromyalgia is hyperalgesia, in which your pain feels worse than what you’d expect from a minor bump or scrape. For instance, if you accidentally pinch your finger in a kitchen cabinet and it hurts for several days instead of several minutes, this could be hyperalgesia.
“With fibromyalgia, you hurt all over, and it goes on for a long time,” says Nilanjana Bose, MD, a rheumatologist at the Rheumatology Center of Houston. “You can have very diffuse joint and muscle pain.”
No matter what type of pain you experience, it’s highly individual. That’s because not everyone experiences pain in the same way, says Yili Huang, DO, director of the Pain Management Center at Northwell Health’s Phelps Hospital in Sleepy Hollow, NY. “Pain is so complex and nothing is black and white,” he says. “There is a wide spectrum of how people with fibromyalgia feel pain. Some people are just more sensitive to pain than others.”
But while pain is a symptom of fibromyalgia, swelling is not. “You won’t have joint swelling or joint deformity with fibromyalgia,” Dr. Bose says. Basically, your joints look normal but they feel anything but fine.
Fatigue & Mental Fog: What Fibromyalgia Feels Like
People who live with fibromyalgia tend to wake up feeling unrefreshed after a night of sleep and when this happens, they don’t get deep, restorative sleep. Individuals with fibromyalgia may have trouble falling asleep as well as staying asleep, and, not surprisingly, can feel constantly fatigued.4 If you’ve ever experienced deep fatigue, you know well the feeling of being so drained of energy that the simplest task is an effort. You can feel like your legs and arms are weighed down by concrete blocks.5 This is what fibromyalgia can feel like.
Sleeping poorly can actually worsen your pain, which is why some people who have fatigue confuse fibromyalgia with another health condition known a chronic fatigue syndrome (CFS).6 With fibromyalgia,along with the fatigue can come brain fog, or as it’s sometimes called, “fibro fog.” This symptom can make it hard to function on a day to day basis. You might have trouble concentrating or retaining new information, which can interfere with carrying out your everyday routine tasks. This fatigue and mental fog can be the most incapacitating of any of the symptoms of fibromyalgia.
People with fibromyalgia may have a lot of trouble concentrating on the task at hand, says Dr. Bose. “You also can experience mood changes and irritability,” she says. “You may have an aversion to bright lights, loud sounds, and certain odors.”
If you have chronic pain along with trouble sleeping and issues with your memory and concentration, you may want to consider seeing a doctor to find out if you have fibromyalgia.
Other Fibromyalgia Symptoms
Pain, fatigue, and trouble sleeping are the chief symptoms of fibromyalgia. But as if these weren’t enough, you may experience other symptoms. You may have migraine or tension headaches and painful menstrual periods. Restless Legs syndrome (RLS) is also a symptom of fibromyalgia.
Individuals who have RLS experience unpleasant sensations in their legs and a nearly irresistible urge to move them. These symptoms are most common and more severe at night, and it can be hard to fall asleep or to return to sleep after you wake up. The condition is usually lifelong but may be treated with lifestyle changes and medications.7 RLS is more common in people who live with fibromyalgia or with rheumatoid arthritis than it is in people who don’t have these health conditions.
Fibromyalgia can even cause digestive problems like irritable bowel syndrome (IBS) and gastroesophageal reflux disease (GERD). It also can be the reason you have an irritable or overactive bladder, pelvic pain, or a jaw disorder called temporomandibular disorder (TMJ). With TMJ, you may experience facial or jaw pain, jaw clicking, and even ringing in the ears.
You Have Fibromyalgia Symptoms. Now What?
A person with fibromyalgia looks basically healthy, and conventional diagnostic tests typically don’t show anything out of the ordinary. So it makes sense to see a practitioner who is knowledgeable about fibromyalgia.9 Generally, the first step is a physical exam.
“When someone comes to me with symptoms of fibromyalgia, I do x-rays and full blood work,” Dr. Bose says. “I take a full medical history of the person’s past and current medical situation.”
Your doctor will most likely run tests for other health conditions, explains Dr. Huang. “It is important to rule out other insidious (a problem that emerges slowly often with no obvious symptom at first) diseases, and if these are all ruled out and you have had the pain for more than three months and it can’t be explained with anything else, then we should consider the diagnosis of fibromyalgia,” he says.
Keep in mind that fibromyalgia can go hand in hand with other health conditions. “Just because you get diagnosed with fibromyalgia doesn’t mean that you can’t also have another painful disorder,” Dr. Huang cautions.
“Some people might assume that if they have joint pain, they must have fibromyalgia,” says Mohab Ibrahim, MD, PhD, an associate professor in the department of anesthesiology and pharmacology and director of the chronic pain clinic at Banner-University Medical Center at the University of Arizona. “But don’t just assume this. You need tests to rule out other disorders since the treatment for fibromyalgia is different from the treatment for various autoimmune disorders.”
Ruling Out Other Conditions
Diagnosing fibromyalgia can take time because other conditions such as rheumatoid arthritis, hypothyroidism, Lyme disease and scleroderma must be ruled out first.
Since fibromyalgia’s primary symptom is arthritis-like pain, you may want to see a rheumatologist, a physician who specializes in arthritis and other autoimmune conditions.
When Jawad Bilal, MD, a rheumatologist at the University of Arizona College of Medicine – Tucson, and associate director of the Rheumatology Fellowship Program, sees an individual with symptoms of fibromyalgia, he tries to rule out other conditions one by one. “Hypothyroidism can present like fibromyalgia, but it can be diagnosed with a blood test,” he says. “Symptoms of low vitamin D levels can mimic fibromyalgia since this condition can cause bone pain.”
But, Dr. Bilal adds, a blood test can determine whether your levels of vitamin D are low.
The End of Pressure Points
Overall, the diagnostic criteria for fibromyalgia are different today. Years ago, if a physician suspected fibromyalgia, the individual needed to have pain at certain pressure points (also called tender points) in at least 11 of 18 places on the body, along with widespread pain.8 But then experts began rethinking these criteria.
The reasoning was that since everyone’s pain experience is individual, the diagnostic process wasn’t as accurate as it should have been if the pressure points had to be counted.
In 2010, new criteria from the American College of Rheumatology eliminated these pressure point requirements. Now, to be diagnosed with fibromyalgia, an individual must have widespread pain lasting for at least three months, fatigue, and cognitive problems or other symptoms, and no other health conditions that would explain the symptoms.
Physicians also use the Widespread Pain Index (WPI) score and the System Severity (SS) score, which were first developed by the American College of Rheumatology to diagnose fibromyalgia. It’s a self-report measure that looks at pain distribution and six symptoms: fatigue, memory difficulties, tiredness, headache, depression, and abdominal pain.
The WPI lists 19 areas of the body, such as the upper arm, the lower arm, the upper leg and the lower leg, where it is common for people with fibromyalgia to experience pain. The Symptom Severity score (SS) score looks at three criteria: waking unrefreshed, fatigue, and cognitive symptoms.
The patient’s level of symptom severity during the previous week is graded on a scale of one to three. For a grade of one, the person would have a slight or mild level of symptoms. For a grade of three, the symptoms would be severe, pervasive, and continuous.
“These scores can helpful but you have to put them into context,” Dr. Bilal says. “They were primarily designed to help guide the diagnosis and cannot replace the physician’s clinical judgment.”
Even though your doctor can’t diagnose fibromyalgia based on x-rays and blood tests, these may be performed to rule out other conditions that can seem like fibromyalgia. To get a clearer picture of whether or not you could have some other health condition, the doctor may order a complete blood count, thyroid function tests, a test to determine your vitamin D level, and an erythrocyte sedimentation rate (ESR).
If your ESR is abnormal, this may signify that there is inflammation somewhere in the body and would mean it’s more likely that you have something else going on besides fibromyalgia. “Your level could be elevated if you have an underlying autoimmune inflammatory disorder,” Dr. Bilal explains.
While it can take time to get a diagnosis of fibromyalgia, learning that you have this health condition means you can begin to get treatments that will help you.