Whether you’ve just been diagnosed or worry you could have fibromyalgia, you’re probably nervous, confused, and scared. That’s normal, and everyone featured on HealthCentral with a serious illness felt just like you do now. But we—and they—are here for you. On this page alone, you’ll discover not only the realities and challenges of the condition, but also the best treatments, helpful lifestyle changes, wisdom from people who have been where you are now, and all the critical information you need to help you not just manage—but thrive.
We went to some of the nation’s top experts in fibromyalgia to bring you the most up-to-date information possible.
Anca Askanase, M.D.Rheumatologist, Director of Rheumatology Clinical Trials
Andrea L. Nicol, M.D.Comprehensive pain management physician, Assistant Professor
Manisha Mittal, M.D.Rheumatologist, rheumatology director, Graduate Medical Education
What Is Fibromyalgia?
The first thing you should know: Fibromyalgia is real. It has real signs and real symptoms and real treatments. You might’ve been told by healthcare professionals that they can’t find anything “wrong” with you, even though you know you are not OK. You might have been told your pain and exhaustion are “all in your head.” But listen: You are not imagining it. Your pain is real. Your exhaustion is real. Fibromyalgia is a real health disorder.
As you’ll see, there’s a lot we still don’t know about fibro. What we do know? Researchers have found concrete differences between a person who has fibro and someone who doesn’t, including in the brain, and abnormalities in how the cytokines, key cells in the immune system, function. Because of this, they believe fibromyalgia is likely a chronic neurologic condition, a brain pain disorder where your central nervous system amplifies how it signals pain in your body due to abnormal sensory processing.
In normal times, your brain typically "turns down" pain signals after you experience a painful event, but in this condition, it turns them up—and keeps turning them up. This is called a central pain amplification disorder, where a trigger causes a change in how your body communicates with your brain and spinal cord. Moreover, when this trigger sets off a pain response in the body, our brains develop pain memories. In people with fibro, those memories lead to faster, stronger pain responses, and a decreasing tolerance to pain.
We also know what fibromyalgia isn’t: It’s not an autoimmune, inflammatory, joint, or muscle disorder. It’s not arthritis. It’s not chronic fatigue syndrome or lupus. It’s a disorder all its own.
And if you have it, or think you do, you’re not alone. About 10 million Americans, or 2% to 4% of the population, have fibromyalgia. Four women for every one man have been diagnosed with it, though the actual number of men may be a bit higher. It can happen at any age, from childhood to the golden years, though it’s more common in those middle-aged. There is currently no cure for fibromyalgia, but there are medications to treat it, as well as lifestyle changes that can help lessen the pain and other symptoms.
Fibromyalgia Is a “New” Disease
You might be surprised to learn that the American Medical Association didn’t consider fibromyalgia an official disorder until 1987. And yet, researchers believe it was first described in 1642 as muscular rheumatism, and then renamed “fibrositis” in the early 1900s. It got its current name in 1976, when it was named for the Latin word fibro, meaning fibrous tissue, and the Greek words mio, meaning muscle, and algia, meaning pain.
In 1990, the American College of Rheumatology (ACR) created its first diagnostic criteria for fibromyalgia, which led to it being added to the International Classification of Diseases in 1992. This established fibromyalgia as a potential disability, granted it academic recognition, and got it on the radar for research funding.
So keep all this in mind as you move through your fibro journey: Not every doctor, healthcare professional, and even your friends may know what this disorder is, how it can be treated, or that it’s a true diagnosis with real repercussions on many aspects of your life.
What Are the Signs and Symptoms of Fibromyalgia?
Each person who has fibromyalgia is an individual representation of the disorder, and the severity of the central nervous system’s ability to function varies from one person to the next. You might have some symptoms more severely than others—or not at all. And that severity may also ebb and flow by day, week, or year.
Widespread pain. This pain can happen anywhere in your body, but there are also tender points that correspond to where pain commonly occurs with fibro. They include the neck, shoulders, chest, hips, knees, elbows, upper back, and lower back. Tender points used to be an important part of clinical diagnosis, but because these can change during and after flares, they’re no longer considered as vital to determining if you have the disorder as they once were. They still matter, though, because they can help pinpoint where your pain predominantly resides.
Stiffness. This can occur throughout your body, including your joints, especially in the morning.
Allodynia. Pain from a sensation that doesn’t usually cause pain is known as allodynia. Something as light a feather could hurt. You can also have hyperalgesia, which is when a painful response hurts far more than it should—a pinch that would usually feel like a 1 or 2 on a pain scale of 10, instead feels like a 9 or 10.
Numbness. You may also experience tingling in the hands and feet.
Mood alterations. You can experience swings from calm to anxiety and back.
Sleep disruptions. These can include sleep apnea and/or waking up feeling unrefreshed or like you haven’t slept at all—even though you just got eight hours of sleep.
Cognitive difficulties. This may include memory problems and issues thinking clearly (often called fibro fog).
Fatigue. With fibro, people experience a deep tiredness they can’t shake.
Other signs and symptoms can include:
Dry eyes and mouth
And probably the biggest non-physical symptoms of all: Depression. Adults with fibromyalgia are three times more likely to have major depression than those who don’t have fibro, and those with fibromyalgia have higher death rates from suicide and injury than the general population, showing just how vital safeguarding your mental health is with this disorder.
What Causes Fibromyalgia?
The short answer? We’re not sure. The long answer? Many factors, from genetic to environmental, could cause or contribute to fibromyalgia. And why you have it might be different from why someone else has it. Genetically, if you have a first-degree relative with fibro, you’re about eight times more likely to have the condition.
But genes alone likely do not cause the disorder. That’s where environmental factors come into play. Those can include:
While the causes of fibromyalgia are still being explored, researchers do agree on one thing: People with this disease share a very specific set of risk factors.
What Are Risk Factors for Fibromyalgia?
If you have other health conditions or disorders, you’re at higher risk for having fibromyalgia. For instance, fibromyalgia affects about 30% of people with autoimmune conditions. Conditions linked to the disorder include:
Fibromyalgia is considered a “diagnosis of exclusion” or differential diagnosis because there are no clinical tests, like a blood test, that can tell for certain that it’s fibro you have, as opposed to other disorders with, say, elevated immune system activity.
Pain plus fatigue can be common in many conditions and diseases, so your doctor will need to rule other issues out before arriving at a fibro diagnosis. These are a few of the things you can expect when you meet with your doctor to discuss the possibility of fibromyalgia.
Medical history: Your doctor will take a full medical history and ask questions about your symptoms.
Physical exam: Your doctor will perform a physical exam to check for tenderness and muscle pain.
Additional testing: You doctor may do X-rays and blood tests to eliminate other conditions, like hypothyroidism and polymyalgia rheumatica, which can be similar to fibro.
Assess your pain: Your doctor may ask about your pain and symptoms over the past week, based on the total of number of painful areas out of 19 parts of the body, plus the level of severity of that pain. Your fatigue and cognitive (memory or thought) problems may also be included in this assessment.
Your diagnosis will take into account other variables as well, such as whether your symptoms have lasted at least three months at a similar level, and whether there is no other apparent health problem that would explain the pain and symptoms.
How Is Fibromyalgia Treated?
The goal of fibromyalgia medication is to ease pain symptoms, improve fatigue, and alleviate depression. The U.S. Food and Drug Administration has approved three drugs to treat fibromyalgia:
Cymbalta (duloxetine): An antidepressant
Lyrica (pregabalin): An anti-seizure medication
Savella (milnacipran): An antidepressant
Other medications used include:
antidepressants and anticonvulsants
alpha 2 agonist
low dose naltrexone
over-the-counter pain meds
It’s important to work with your healthcare providers to determine which medications work best for you. Beyond meds, a host of non-drug treatments are commonly used in fibro management, with reasonable success, especially when used in conjunction with drug therapy. These may include:
Cognitive behavioral therapy (CBT)
Getting good sleep
Heat therapy like hot showers and hot bath (currently in clinical study)
Mild to moderate exercise (like swimming, aquatic aerobics, yoga)
Fibromyalgia Care Society of America: This organization provides education, care, and supportive services to those living with this chronic pain disorder through programs including Fibro Cares and “empowerment groups” that provide targeted cognitive behavioral group therapy sessions for people with fibro.
International Support Fibromyalgia Network (ISFN, also known as Support Fibro): A patient-centered group, this nonprofit organization offers a variety of programs and resources for fibromyalgia patients, as well as providers. Support group resources are coming soon, while the org currently offers online webinars for men (called “Men Get Fibro”), services for teens and young adults, and more.
Ravyn’s Doll: This book, subtitled “How to explain fibromyalgia to your child,” is written by Melissa Swanson, who runs the blog Fibro Warriors – Living Life, and is illustrated by Ana Aleksanyan. It tells the story of a little’s girl mom who has fibromyalgia. It helps children learn that invisible illnesses can be just as serious as those that can be seen.
The underlying cause of fibro is still being researched, but we do know that it is a disorder of the central nervous system. People with fibromyalgia experience pain amplification due to abnormal sensory processing. Scientists believe that both genetic and environmental factors may play a role.
Who gets fibromyalgia?
Fibromyalgia is one of the most common chronic pain conditions. The condition affects an estimated 10 million people in the U.S. and while fibromyalgia is most prevalent in women (75% to 90% percent of the people who have fibro are female), it also occurs in men and children, and in people of all ethnic groups.
Are there non-drug ways to treat fibromyalgia?
Yes! There are multiple drug-free therapies that you can try that have shown to be successful in treating fibro symptoms. These include acupuncture, cognitive behavioral therapy, and massage therapy. These modalities can be used on their own or in conjunction with medication to help people relieve their symptoms.
What are the symptoms of fibromyalgia?
The most common symptom is deep pain, which can occur anywhere on the body, and may move around from one spot to another. It frequently appears in the neck, hips, knees, and back. Morning joint stiffness is another symptom, as is depression: People with fibro are three time more likely to struggle with this mental health issue.