Fibromyalgia, a potentially debilitating syndrome marked by chronic body-wide pain and fatigue, has long been hard to diagnose and treat.
For years, doctors were unsure who even had this ailment, because there's no definitive test for it. And its symptoms could be attributed to many other conditions. Nevertheless, it's believed to affect some 10 million Americans.
Some doctors also considered it a psychological, not physical, ailment, and the treatments that have often been used, including opioid painkillers, didn't always help a lot.
While significant challenges remain, better tools for determining who really has fibromyalgia and more evidence on effective lifestyle strategies are now emerging. "We are certainly learning more about the disease and making incremental progress," says Michael Hochman, M.D., M.P.H., an associate professor of clinical medicine at the University of Southern California, who treats many people with fibromyalgia.
Here, on Fibromyalgia Awareness Day, are the expert answers that can help you understand and cope with this complicated syndrome.
What Exactly Is Fibromyalgia?
Fibromyalgia causes persistent joint and muscle pain and tenderness that can affect you from head to toe and has no known cause or cure.
It's often thought of as a disorder of pain regulation, where your nervous system—for reasons not yet understood—amplifies sensations of pain, sometimes excruciatingly so.
Fibromyalgia pain can be severe enough to interfere with sleep, mood, and daily activities such as household chores. For instance, a touch on the arm or the pressure of a blood pressure cuff can be agonizing to a person with fibromyalgia, says Daniel Clauw, M.D., a pain researcher at the University of Michigan.
In addition to muscle and joint pain and fatigue, fibromyalgia can bring headaches, memory problems, stiffness, and poor balance, as well as numbness, burning, or tingling in the hands and feet.
Fibromyalgia can affect anyone, but is most common in women 20 to 55. It's also more likely in those who are obese or have insomnia or a family history of fibromyalgia, or have experienced emotional or physical trauma or serious infections, such as Epstein-Barr or Lyme disease.
People with fibromyalgia are also often acutely sensitive to pain, light, heat, and other stimuli, feeling everything more intensely than others do.
How Do You Know If It's Really Fibromyalgia?
It can be hard to know whether fibromyalgia or another condition is causing your symptoms.
Sometimes, a combination of ailments is at fault. For instance, about half of people with fibromyalgia also have a long history of depression. And approximately 10 to 30 percent of those with rheumatoid arthritis or osteoarthritis have fibromyalgia as well, according to UpToDate, which provides evidence-based treatment information to healthcare providers.
But if you have widespread pain and fatigue, sleeping problems, headaches, and feel anxious or depressed for three months or more, and are unsure why, talk to your primary care doctor. (Your doctor may refer you to a rheumatologist or recommend that you also see other healthcare specialists, like a physiatrist or physical therapist.)
Your doctor should take a thorough health history and have you pinpoint the locations of your pain, its impact on your life, and the presence and severity of fatigue, cognitive issues, and sleep and mood disturbances, according to the 2016 diagnostic criteria from the American College of Rheumatology.
A physical exam will focus on the 18 points on the body that typically feel especially tender to someone with fibromyalgia. If your pain is widespread and your other symptoms significant, and no other condition explains them, your doctor will give you a diagnosis of fibromyalgia.
But getting to this point may be challenging. Doctors may miss fibromyalgia because the symptoms can masquerade as or overlap with conditions such as lupus.
And some doctors fail to diagnose fibromyalgia properly because they don't believe it's a true illness, Hochman says. "They still think fibromyalgia is a disease all in the patient's head."
Other research, such as a 2016 study published in the journal PLOS One, suggests that some people may be told they have fibromyalgia when they don't. The study found that 74 percent of people diagnosed with fibromyalgia did not meet the ACR criteria.
But that study captured people's symptoms only on a one-time basis—a flaw, according to Clauw, who says, "It's quite common for someone to meet (fibromyalgia) criteria at one point in time, and not another."
If you're concerned that you're not getting diagnosed properly, ask your doctor for a referral to a rheumatologist or another doctor with experience treating people with fibromyalgia.
What Should You Try First for Fibromyalgia?
No one treatment plan works for everyone, and most people need a combination of strategies. And a team approach, which includes therapists, rheumatologists, and other specialty providers, is often best.
Newer research suggests that lifestyle strategies should be the bedrock of treatment. Simply learning about your condition, for instance, may be surprisingly therapeutic, Hochman says. And as researchers write in this month's Cleveland Clinic Journal of Medicine, "Sustained, lifelong exercise is the treatment strategy most associated with improvement." Here are some lifestyle steps to consider.
Get daily activity. Exercise is now thought to bring a host of positive benefits, reducing pain, improving mobility and circulation, helping you get much-needed sleep, and easing anxiety and depression. What you do doesn't have to be strenuous, says Carmen E. Gota, M.D., director of the Fibromyalgia Clinic at the Cleveland Clinic's Orthopaedic and Rheumatologic Institute.
Aerobic exercise (the type of activity most often recommended to those with fibromyalgia) and resistance training are beneficial, but walking at a gentle pace, restorative yoga, and light stretching can also help curb symptoms. Pool-based exercise may also be a good way to begin.
Check out alternatives. Evidence is growing for the benefits of tai chi, a graceful, low-impact form of mind-body exercise. In a study published in BMJ in March, researchers found that one hour of tai chi a day led to equal or greater pain relief than the same amount of aerobics. They also found that tai chi could be easier for people with fibromyalgia to manage than other kinds of exercise.
Give yourself a break. Whatever physical activity you choose, start slowly, with low-impact activity, and build up over time as your energy level and pain permit. Doing too much too soon can lead to worsening pain, according to a clinical review by Clauw published in JAMA in 2014. And if you have been sedentary for a long time, ask your doctor to recommend a physical therapist or physiatrist to help you get started.
Get some support. Talk therapy, especially cognitive behavioral therapy, may also be beneficial. It's crucial to find a therapist experienced at working with people who have chronic pain. You can find therapists through the Association for Behavioral and Cognitive Therapies website. Activities that reduce stress, such as deep breathing or meditation, may be useful as well.
Eat right. When it comes to food choices, there's no scientific proof that specific dietary interventions—such as the fibromyalgia diets you may see mentioned online—decrease symptoms. But evidence suggests that people who consume a lot of fruits and vegetables and avoid foods they are allergic or sensitive to (such as gluten, for some) may have less severe symptoms.
And maintaining a healthy weight will put less pressure on joints, which can help reduce pain. Before you make significant dietary changes, talk with your doctor, who may involve a registered dietitian in your care.
Should You Take Medication?
If lifestyle strategies haven't sufficiently improved your symptoms after a few months, you may want to consider medication as well. But all have their limitations. "Unfortunately, most of the medications we have at our disposal aren't all that effective," says Hochman. Here's the lowdown on the drugs that may commonly be used for fibromyalgia.
OTC pain relievers. Some doctors may start out recommending an over-the-counter anti-inflammatory pain reliever, such as ibuprofen (Advil and generic) or naproxen (Aleve and generic). However, these drugs haven't been proven to significantly ease symptoms, unless used in conjunction with prescription medication, according to UpToDate.
Prescription drugs approved for fibromyalgia. Just three drugs have been approved by the Food and Drug Administration for fibromyalgia: the anticonvulsant pregabalin (Lyrica and generic), and the antidepressants duloxetine (Cymbalta and generic) and milnacipran (Savella). Your doctor may recommend one or a combination.
In clinical trials, all were found to help with fibromyalgia symptoms, but they don't work for everyone, and they can have side effects such as drowsiness and nausea. The recent Cleveland Clinic Journal of Medicine review found that only 50 to 60 percent of people reported that the approved drugs reduced their pain by more than 30 percent.
Off-label drugs. Some studies have also found that the antidepressant amitriptyline, which is not approved for fibromyalgia—but is sometimes prescribed off-label for this purpose—may have similar effectiveness to the three drugs above. This generic may be worth considering as an initial medication, notes UpToDate.
Another off-label drug that could be useful as a first medication is the anticonvulsant gabapentin (Neurontin and generic). Both drugs can cause dizziness, dry mouth, fluid retention, and weight gain.
Opioids. Potent opioid painkillers oxycodone (Oxycontin and generic) are still sometimes prescribed for fibromyalgia, but the 2017 treatment guidelines published in the journal Biomedicines discourage this practice.
Tramadol (Ultram and generic), considered a "weak" opioid, may be somewhat helpful and is thought to have less of a potential for addiction, according to a review published last year in the Pharmaceutical Journal.
With or without medication, experts say, it's essential to stick with lifestyle strategies and to make physical activity in particular a permanent part of your life.
If you feel discouraged, "Keep moving forward and try to get help," Clauw says. "There is hope and you can and will get a lot better if you keep trying new things."