Is fibromyalgia a progressive disease?

When you get injured, nerve signals travel from the problem spot on your body through your spinal cord to your brain, which senses these signals as pain. It’s a warning that something’s wrong. As you heal, the pain gets better, and in time it goes away.

But if you have fibromyalgia, you hurt all over even when you’re not sick or injured. And the pain doesn’t go away. Some doctors think they know why: a glitch in the way your brain and spinal cord handle pain signals.

When you have fibromyalgia, you may have more cells that carry pain signals than normal. And you may have fewer cells that slow pain signals down. This means your pain volume is always turned up, like music blasting on a radio. The result is that minor bumps and bruises hurt more than they should. And you may feel pain from things that shouldn’t hurt at all.

Doctors aren’t sure why some people get fibromyalgia. Many things could cause the body’s pain signals to go awry. Plus, different people report different things that seemed to trigger their condition. You can even have more than one cause. They can include:

  • Genes. Fibromyalgia seems to run in families. Your parents may pass on genes that make you more sensitive to pain. Other genes can also make you more likely to feel anxious or depressed, which makes pain worse.
  • Other diseases. A painful disease like arthritis or an infection raises your chances of getting fibromyalgia.
  • Emotional or physical abuse. Children who are abused are more likely to have the condition when they grow up. This may happen because abuse changes the way the brain handles pain and stress.
  • Posttraumatic stress disorder (PTSD). Some people have this mental health problem after a terrible event, like war, a car crash, or rape. These events are also linked to fibromyalgia in some people.
  • Gender. The condition is much more common in women than men. Doctors think this could be related to differences in the way men and women feel and react to pain, as well as how society expects them to respond to pain.
  • Anxiety and depression. These and other mood disorders seem linked to fibromyalgia, though there’s no proof that they actually cause the condition.
  • Not moving enough. The condition is much more common in people who aren’t physically active. Exercise is one of the best treatments for fibromyalgia you already have. It can help turn the pain volume down.

Fibromyalgia

What is fibromyalgia?

Fibromyalgia (fi·bro·my·al·gi·a) is a condition that causes pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress. People with fibromyalgia may be more sensitive to pain than people without fibromyalgia. This is called abnormal pain perception processing. Fibromyalgia affects about 4 million US adults, about 2% of the adult population. The cause of fibromyalgia is not known, but it can be effectively treated and managed.

What are the signs and symptoms of fibromyalgia?

The most common symptoms of fibromyalgia are

  • Pain and stiffness all over the body.
  • Fatigue and tiredness.
  • Depression and anxiety.
  • Sleep problems.
  • Problems with thinking, memory, and concentration.
  • Headaches, including migraines.

Other symptoms may include:

  • Tingling or numbness in hands and feet.
  • Pain in the face or jaw, including disorders of the jaw know as temporomandibular joint syndrome (also known as TMJ).
  • Digestive problems, such as abdominal pain, bloating, constipation, and even irritable bowel syndrome (also known as IBS). Top of Page

What are the risk factors for fibromyalgia?

Known risk factors include:

  • Age. Fibromyalgia can affect people of all ages, including children. However, most people are diagnosed during middle age and you are more likely to have fibromyalgia as you get older.
  • Lupus or Rheumatoid Arthritis. If you have lupus or rheumatoid arthritis (RA), you are more likely to develop fibromyalgia.

Some other factors have been weakly associated with onset of fibromyalgia, but more research is needed to see if they are real. These possible risk factors include:

  • Sex. Women are twice as likely to have fibromyalgia as men.
  • Stressful or traumatic events, such as car accidents, post-traumatic stress disorder (PTSD).
  • Repetitive injuries. Injury from repetitive stress on a joint, such as frequent knee bending.
  • Illness (such as viral infections).
  • Family history.
  • Obesity.

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How is fibromyalgia diagnosed?

Doctors usually diagnose fibromyalgia using the patient’s history, physical examination, X-rays, and blood work.

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How is fibromyalgia treated?

Fibromyalgia can be effectively treated and managed with medication and self-management strategies. You can learn about self-management strategies in the section below titled How can I improve my quality of life?

Fibromyalgia should be treated by a doctor or team of healthcare professionals who specialize in the treatment of fibromyalgia and other types of arthritis, called rheumatologists. Doctors usually treat fibromyalgia with a combination of treatments, which may include:

  • Medications, including prescription drugs and over-the-counter pain relievers.
  • Aerobic exercise and muscle strengthening exercise.
  • Patient education classes, usually in primary care or community settings.
  • Stress management techniques such as meditation, yoga, and massage.
  • Good sleep habits to improve the quality of sleep.
  • Cognitive behavioral therapy (CBT) to treat underlying depression. CBT is a type of talk therapy meant to change the way people act or think.

In addition to medical treatment, people can manage their fibromyalgia with the self-management strategies described below, which are proven to reduce pain and disability, so they can pursue the activities important to them.

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What are the complications of fibromyalgia?

Fibromyalgia can cause pain, disability, and lower quality of life. US adults with fibromyalgia may have complications such as:

  • More hospitalizations. If you have fibromyalgia you are twice as likely to be hospitalized as someone without fibromyalgia.
  • Lower quality of life. Women with fibromyalgia may experience a lower quality of life.
  • Higher rates of major depression. Adults with fibromyalgia are more than 3 times more likely to have major depression than adults without fibromyalgia. Screening and treatment for depression is extremely important.
  • Higher death rates from suicide and injuries. Death rates from suicide and injuries are higher among fibromyalgia patients, but overall mortality among adults with fibromyalgia is similar to the general population.
  • Higher rates of other rheumatic conditions. Fibromyalgia often co-occurs with other types of arthritis such as osteoarthritis, rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis.

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How can I improve my quality of life?

  • Get physically active. Experts recommend that adults be moderately physically active for 150 minutes per week. Walk, swim, or bike 30 minutes a day for five days a week. These 30 minutes can be broken into three separate ten-minute sessions during the day. Regular physical activity can also reduce the risk of developing other chronic diseases such as heart disease and diabetes. Learn more about physical activity for arthritis. You can exercise on your own or participate in a CDC-recommended physical activity program.
  • Go to recommended physical activity programs. Those concerned about how to safely exercise can participate in physical activity programs that are proven effective for reducing pain and disability related to arthritis and improving mood and the ability to move. Classes take place at local Ys, parks, and community centers. These classes can help you feel better. Learn more about CDC-recommended physical activity programs.
  • Join a self-management education class, which helps people with arthritis or other conditions—including fibromyalgia—be more confident in how to control their symptoms, how to live well and understand how the condition affects their lives. Learn more about the CDC-recommended self-management education programs.

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Learn more about fibromyalgia

  • National Institute of Arthritis and Musculoskeletal and Skin Diseases—FibromyalgiaExternal
  • American College of Rheumatology—Fibromyalgia Fast FactsExternal
  • National Fibromyalgia and Chronic Pain AssociationExternal
  • MedlinePlus—FibromyalgiaExternal

Learn more about arthritis Top of Page

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There’s a lot of disagreement among doctors when it comes to fibromyalgia. Theories differ as to what causes it and how best to treat it. There’s even disagreement about what to call it — some call it a syndrome, others a disorder, still others a chronic condition.

Whatever you label it, and whatever its origins, fibromyalgia presents a very real challenge to those coping with its symptoms each day.

Fibromyalgia is a common chronic pain condition — it affects millions of people in the United States. It’s far more common in females than males and can start when kids are in their teen years or even younger, although it’s most common in women between the ages of 20 and 50.

About Fibromyalgia

Fibromyalgia (fy-bro-my-AL-ja) is a long-term, or chronic, syndrome that causes widespread pain in the muscles, joints, and other soft tissues of the body. The term “fibromyalgia” comes from the Latin word “fibro” for fibrous tissue, and the Greek “myo” for muscle, and “algos” meaning pain. In kids, it is sometimes referred to as juvenile primary fibromyalgia syndrome.

The pain of fibromyalgia is often accompanied by isolated tender or sore areas, fatigue, poor sleep, headaches, and other symptoms. Fibromyalgia is often considered a syndrome rather than a disease because it’s a collection of symptoms that seem to be related but, unlike a disease, there’s no cause that can be identified.

Although fibromyalgia is a chronic condition, its symptoms typically come and go. They can be mild at times, then so severe at others that they interfere with normal activities. Many kids with fibromyalgia can attend school regularly, but their abilities vary depending upon the severity of their symptoms.

Treatment for fibromyalgia focuses on managing the pain and other symptoms. This often involves a combination of medicines and lifestyle changes, such as exercise, relaxation, and stress-management techniques. There is no cure for fibromyalgia, but treatment has been shown to improve the quality of life for those who have it.

Symptoms

Most kids with fibromyalgia complain of widespread muscle pain, usually a dull or burning kind, but sometimes more of a shooting or throbbing pain. Widespread means the pain happens on both sides of the body, above and below the waist; it can range from mild to severe.

Usually, someone with fibromyalgia also has a number of tender spots — places where he or she feels pain if the spot is pressed. Common tender spots include the back of the head, between the shoulder blades, shoulders, chest, neck, hips, knees, and elbows.

Fatigue (tiredness) is another common complaint of kids with fibromyalgia. Because of this, fibromyalgia can mimic the symptoms of a similar condition called chronic fatigue syndrome. Sometimes, a person can have both conditions, but they are separate syndromes.

Fibromyalgia also usually causes sleeping problems that make getting a good night’s sleep difficult. Some kids may have other sleep disorders like restless legs syndrome and sleep apnea. Poor sleep can also lead to waking up with body aches and stiffness that may improve during the day, then get worse at night.

Additional symptoms of fibromyalgia can include:

  • gastrointestinal problems like irritable bowel syndrome
  • problems with memory or concentration
  • headaches
  • irritability
  • anxiety
  • depression

People with fibromyalgia often notice a variety of external factors that can make their symptoms worse, from emotional stress to cold, damp weather.

Causes

Doctors aren’t really sure what causes fibromyalgia, but most agree that the brains of people who have it sense pain differently. They might feel pain in response to things (like stress) that aren’t normally painful.

Some cases of fibromyalgia seem to be triggered by an event — like an infection or illness, physical injury, or emotional upset. Genetic factors also might play a role. Fibromyalgia tends to run in families, so it’s possible that having a genetic mutation may increase someone’s risk of developing the condition.

Diagnosis

If your child seems to be suffering from one or more of fibromyalgia’s major symptoms — such as chronic muscle pain, fatigue, or disrupted sleep — contact a doctor. While there’s no specific test to diagnose fibromyalgia, a doctor can run tests to rule out other possible causes, such as thyroid disorders, infectious diseases, or rheumatic diseases (like juvenile idiopathic arthritis).

Since fibromyalgia can’t be confirmed by any laboratory tests and has few, if any, visible signs, it can be difficult for doctors to diagnose the condition. This can be frustrating for someone who has it. Some estimates claim that it takes an average of 5 years for someone with fibromyalgia to get an accurate diagnosis, and some doctors are not as familiar with the condition as others.

Doctors diagnose fibromyalgia in someone based on medical history, the person’s description of symptoms, and a physical exam, including a check of 18 usual tender spots. Most kids with fibromyalgia will have pain when pressure is applied to at least five of the tender spots, and will have widespread musculoskeletal aches lasting for at least 3 months, with no other medical problem causing the pain.

Treatment

There’s no cure for fibromyalgia, but treatment can help manage symptoms, ease pain, and improve a child’s overall health and quality of life. Treatments for fibromyalgia include both lifestyle changes, behavioral therapy, and medicines.

Before giving medicines, doctors usually will try other treatments, such as:

  • Regular exercise. This may increase pain at first, but exercise can help ease symptoms when done gradually and regularly. Some kids benefit from working with a physical therapist. Others can show improvement from stretching and relaxation exercises.
  • Stress-relief methods. This can include yoga, t’ai chi, and other disciplines, as well as light massage, breathing exercises, and acupuncture.
  • Proper sleep. Getting enough sleep is one of the most effective ways to treat fibromyalgia, so children with fibromyalgia should be encouraged to avoid caffeine and sugary beverages and snacks right before bedtime. They also should go to bed and get up at the same time each day and limit napping during the daytime.
  • Healthy lifestyle choices. This includes eating a healthy diet and finding activities that help distract from the symptoms of fibromyalgia.

Some kids also find that changing the way they think about their condition helps improve their symptoms. Cognitive-behavioral therapy (CBT), a therapy used by mental health professionals, can help kids learn to filter out negative thoughts, recognize what makes symptoms worse, and set limits to keep symptoms in check.

If these steps aren’t enough to manage fibromyalgia symptoms, the doctor may prescribe medications. Some of the more common ones prescribed to treat fibromyalgia are:

  • Pain relievers. Over-the-counter medicines, such as acetaminophen, ibuprofen, and naproxen sodium, can help ease the pain and stiffness caused by fibromyalgia. Doctors also may use prescription pain relievers, such as tramadol.
  • Antidepressants. A number of prescription antidepressants are used to ease pain and fatigue and help promote better sleep.
  • Anti-seizure medications. A handful of drugs used to treat epilepsy are also useful in treating fibromyalgia symptoms.

In addition to helping your child manage the symptoms of fibromyalgia, it’s also important to provide the necessary emotional support. Talking about the condition and coming up with coping strategies together can help.

Many young people also find that support groups, as well as counseling from a trained psychologist, can help them learn to manage their symptoms, feel better, and have a more positive outlook on life./p>

Reviewed by: Larissa Hirsch, MD Date reviewed: October 2015

Dr. Dan Clauw, University of Michigan Medical School’s Chronic Pain & Fatigue Research Center, Ann Arbor, Michigan

Dr. Dan Clauw

“It is very common for individuals with fibromyalgia to progressively worsen over time, but that does not mean the disease is progressive (which I do not believe it is). Most of us believe that the slow gradual worsening of chronic pain patients over time is due to downstream consequences of poorly controlled pain and other symptoms, wherein individuals then progressively get less active, sleep worse, are under more stress and unknowingly develop bad habits which worsen pain and other symptoms.

“In this regard any chronic illness is progressive if the disease is not well managed. If we leave rheumatoid arthritis or gout untreated for decades, these are progressive disorders, but if we treat them effectively when people initially develop symptoms, then they are not. Individuals with fibromyalgia whose symptoms are well managed will not typically worsen over time.”

Dr. Kevin Fleming, Mayo Clinic Fibromyalgia and Chronic Fatigue Clinic, Rochester, Minnesota

Dr. Kevin Fleming

“In short, no. Fibromyalgia (FM) is felt to be a disorder of pain processing in the central nervous system, especially the brain. FM symptoms wax and wane, and can progressively worsen in some patients, but FM is not progressive in the medical sense that it is non-deforming, non-degenerative and nonfatal (unlike, for example, lupus or Parkinson’s disease).

“The longer one has had pain symptoms, the greater the pain has been, and the more non-pain physical symptoms also present, the more likely the symptoms will remain chronic. But symptoms can and do improve, permitting normal daily function, even if pain symptoms never fully resolve. Although the origin of FM remains unclear, fibromyalgia is likely in part a response to environmental factors in genetically predisposed individuals.”

Dr. Randall Gates and Dr. Martin Rutherford, Power Health Rehab and Wellness Center, Reno, Nevada

Dr. Randall Gates

(Note: Drs. Gates and Rutherford have a YouTube channel where they regularly discuss the treatment of fibromyalgia and its common comorbidities. In my opinion, it’s some of the best fibro-related material on YouTube.)

“For a minority of fibromyalgia sufferers, the pain and associated symptoms can indeed improve without treatment. This was documented in the recent publication of the Journal of Pain Research. However, such improvements are not the case for the majority of those with fibromyalgia, and in our observation, fibromyalgia does become progressively worse over time.

“Likely the gradual decline seen with fibromyalgia is due to the chronic, autoimmune and or degenerative nature of the underlying causes associated with the condition.

Dr. Martin Rutherford

For example, upwards of 50 percent of fibromyalgia sufferers have small fiber peripheral neuropathy (where for all intents and purposes the pain nerves degenerate), and this is identified as a peripheral generator of pain.Other associated causes and factors of fibromyalgia include abnormal pain receptor transmission (seen in upwards of 80 percent of those with fibromyalgia), a form of autoimmune thyroid disease referred to as Hashimoto’s thyroiditis, non-celiac gluten sensitivity, post-traumatic stress disorder secondary to childhood abuse and insomnia.

“In addition to the myriad of causes, the majority of fibromyalgia patients do become progressively worse as their pain results in deconditioning. Though told to exercise, the pain can prohibit this, leading to less tolerance for activities of daily living.”

Dr. Carmen Gota, Cleveland Clinic Fibromyalgia Management Program

Dr. Carmen Gota

“All patients present with the same symptoms, but each patient has his or her own fibromyalgia ‘fingerprint,’ meaning that beside the diagnosis of fibromyalgia lie a number of risk factors or aggravating factors that need to be identified and targeted. These include genetic predisposition, certain personality types, various emotional, physical or sexual stressors, as well as sleep disorders, lack of exercise and mood disorders.

“A study done on 1,555 patients with fibromyalgia from various rheumatology practices in the U.S. by Brian Wallitt from the National Institutes of Health found that only around 10 percent of patients get much better. Most patients continue to have a high burden of symptoms from fibromyalgia.

“Fibromyalgia can be a disabling condition, causing people to lose their jobs, income and causing a lot of stress on families. In patients in whom the condition is not recognized, and the factors behind fibromyalgia, such as lack of education, lack of exercise, severe mood disorders, and sleep disorders, as well as chronic stressors, are not addressed, the condition can get worse.

“In order to prevent fibromyalgia from getting worse, it is important to do the following things: 1) Diagnose it early. 2) Educate patients and families with regards to the nature of this condition. 3) Identify modifiable risk factors that can be treated, such as depression, sleep disorders, maladaptive responses to pain. 4) Ensure regular follow up with a primary-care physician as well as access to non-pharmacologic interventions, such as physical therapy and multidisciplinary care to prevent relapses.”

Dr. Ginevra Liptan, author of “The FibroManual” and founder of the Frida Center for Fibromyalgia near Portland, Oregon

Dr. Ginevra Liptan

“Is fibromyalgia progressive? First, a clarification is in order. What physicians mean by a ‘progressive’ illness is one in which function is lost over time – the classic example being multiple sclerosis, an illness characterized by progressive nerve damage and loss of muscle function. Using that definition, fibromyalgia is not progressive.

“But what most people are really asking with that question is does fibromyalgia get worse over time? In my experience it generally does not, but this depends on two competing factors. First, as we age we lose muscle strength and flexibility, develop wear and tear arthritis and sleep quality diminishes. All of these can cause pain, fatigue and fog to worsen over time.

“The opposing factor here is that over time we learn ways to better manage fibromyalgia and find ways to lessen symptoms, whether that is eliminating foods that trigger symptoms, finding what works for us to lessen pain or discovering the right sleep medication to get us into deeper sleep. Every person with fibromyalgia is different, and it is impossible to predict how these two competing factors will play out in each person’s life. But for most people, symptoms do not worsen over time.”

Dr. Neil Nathan, author of “Mold and Mycotoxins: Current Evaluation and Treatment 2016,” Redwood Valley Clinic, Redwood Valley, California

Dr. Neil Nathan

“The answer is that for some patients it is and for some it isn’t. It is important to understand for each patient, individually, the cause(s) of their fibromyalgia, which is not a ‘thing’ but a syndrome. First, it can be cured or improved only by identifying those causes, and whether or not it is progressive depends on whether and to what extent those causes are addressed.

“To be more specific, looking for infections (Lyme, viral), toxins (mold, heavy metals), endocrine (adrenal, thyroid, sex hormones), gastrointestinal (dysbiosis, food allergy), mineral deficiencies (magnesium), biochemical dysfunction (methylation, hypoglycemia) and/or dental causes are critical to answering this important question.”

Dr. Richard Podell, The Podell Medical Practice, Somerset, New Jersey

Dr. Richard Podell

“For most people with moderate or severe fibromyalgia, there are better and worse periods but usually not major progression. For others progression does occur.

“Part of what the doctor should do is see whether other conditions are involved with the worsening e.g. missed diagnoses like Lyme, sleep issues, depression, spinal discs, etc.

“Consider going to my website, DrPodell.org. Go to ‘blog’ at the top of each page. Every so often, I post an evaluation of a potentially useful treatment. This blog also appears at ProHealth.com, the largest web-based fibromyalgia support site.”

Dr. Jacob Teitelbaum, author of “The Fatigue and Fibromyalgia Solution,” EndFatigue.com

Dr. Jacob Teitelbaum

“It varies from person to person. In most people though, it can progress to a certain level of severity and then tends to stay at that level until treated. It may spontaneously resolve in some, but is unlikely to do so on its own after five years.

“Our research shows that with using an integrated protocol called S.H.I.N.E. (sleep, hormonal support, infections, nutrition and exercise as able), 91 percent improve with an average 90 percent improvement in quality of life, no matter how long they’ve been ill. The study can be seen here.
“A free Energy Analysis Program at www.endfatigue.com can analyze the person’s symptoms and even labs to determine the underlying factors contributing to that individual’s fibromyalgia and tailor a treatment protocol to their case.”

So, now it’s your turn: Do you think fibromyalgia is progressive? Share your thoughts in the comments below!

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

Focusing on Fibromyalgia

A Puzzling and Painful Condition

You’ve probably heard of fibromyalgia, but you may not know what it is. Fibromyalgia is a long-term (chronic) pain condition that affects 5 million or more Americans ages 18 and older. For unknown reasons, most people diagnosed with fibromyalgia are women, although men and children also can be affected. People with certain disorders, such as rheumatoid arthritis or lupus, may also have fibromyalgia, which can affect their disease course and treatment.

Fibromyalgia can take a powerful toll on health, well-being, and quality of life. “People with fibromyalgia suffer from severe, daily pain that is widespread throughout the body,” says Dr. Leslie J. Crofford, an NIH-supported researcher at Vanderbilt University. “Their pain is typically accompanied by debilitating fatigue, sleep that does not refresh them, and problems with thinking and memory.”

People with fibromyalgia often see many doctors before finally receiving a diagnosis. The main symptoms—pain and fatigue—overlap with those of many other conditions, which can complicate the diagnosis.

“To make things more challenging, there are no blood tests or X-rays that are abnormal in people with the disorder,” says Crofford. With no specific diagnostic test, some doctors may question whether a patient’s pain is real. “Even friends, family, and coworkers may have a difficult time understanding the person’s symptoms,” Crofford says.

A doctor familiar with fibromyalgia can make a diagnosis based on the criteria established by the American College of Rheumatology. Diagnostic symptoms include a history of widespread pain lasting more than 3 months and other symptoms such as fatigue. In making the diagnosis, doctors consider the number of areas throughout the body where the patient had pain in the past week, and they rule out other causes of disease.

What causes fibromyalgia isn`t fully understood. Many factors likely contribute. “We know that people with fibromyalgia have changes in the communication between the body and the brain,” Crofford says. These changes may lead the brain to interpret certain sensations as painful that might not be bothersome to people without the disorder.

Researchers have found several genesStretches of DNA, a substance you inherit from your parents, that define characteristics such as eye color and your risk for certain diseases. that may affect a person’s risk of developing fibromyalgia. Stressful life events may also play a role.

Fibromyalgia isn’t a progressive disease, so it doesn’t get worse over time and may even improve. It’s never fatal, and it won’t harm the joints, muscles, or internal organs.

Medications may help relieve some—but not all—symptoms of fibromyalgia. “Drug treatments by themselves don’t result in remission or cure of fibromyalgia,” says Crofford. “We’ve learned that exercise may work as well as or better than medications. In addition, therapies such as tai chi, yoga, and cognitive behavior therapy can also help to reduce symptoms.”

People with fibromyalgia often have the best results when treated with multiple therapies. “It’s critically important for health care providers to help patients develop an understanding of fibromyalgia, and to provide realistic information about treatments, with an emphasis on using exercise and other physical therapies in conjunction with medications,” Crofford says.

Crofford and her colleagues are exploring whether a treatment called TENS (transcutaneous electrical nerve stimulation) can help people with fibromyalgia exercise more comfortably and reduce pain. She and other NIH-funded teams are also seeking markers of fibromyalgia in the blood that might ultimately lead to more targeted and effective treatments.

If you or someone you know has fibromyalgia, see the “Wise Choices” box for tips on reducing its impact.

Fibromyalgia at Different Ages: Same Condition, Different Challenges

If you’ve been diagnosed with fibromyalgia, you may have experienced a number of stereotypes about the condition firsthand. One persistent misconception is that fibromyalgia affects mostly middle-aged or older people — specifically, older women.

In reality, fibromyalgia affects a wide range of ages, and both sexes. While it’s more likely to be diagnosed at an older age — about 8 percent of people meet the criteria by age 80, according to the National Fibromyalgia Association — this may reflect differences in screening and reporting of symptoms, rather than simply how common the disease is.

But regardless of how likely you are to have fibromyalgia at a given age, the condition often presents different challenges at different stages in life. That’s both because of social and occupational factors — like whether you’re in school, working a full-time job, or raising a family — and because older people are more likely to have other health conditions.

Here’s some background information on what to expect from fibromyalgia at different ages, along with personal accounts of living with the condition.

Is Fibromyalgia an Age-Related Disease?

While a diagnosis of fibromyalgia becomes more common with age, not all doctors agree that this is based on how common the condition actually is.

“We’ve found that it is not an age-related disease,” says Bruce S. Gillis, MD, a research physician and fibromyalgia expert in Los Angeles, who has developed a diagnostic test for fibromyalgia. “It can afflict young children to the very elderly.”

Younger people, Dr. Gillis says, are often screened for and diagnosed with other conditions, even if their symptoms point toward fibromyalgia. For example, he says, many children diagnosed with ADHD (attention deficit hyperactivity disorder) test positive for biomarkers associated with fibromyalgia.

But while the onset of fibromyalgia may not be more common in older people, Gillis believes that symptoms may vary somewhat with age. “It’s reasonable to assume that the elderly may have more intense symptoms” of fibromyalgia, he says, since they may experience an overall loss of stamina, problems with sleep, and other causes of joint and muscle pain.

Furthermore, Gillis notes, older people “often don’t have the ability to exercise as much as they would like, so they end up being in a shut-in type of situation,” which can lead to greater fatigue as well as depression and anxiety.

Getting Diagnosed With Fibromyalgia as a Young Adult

While getting a correct diagnosis of fibromyalgia can be difficult at any age, this issue can be a particular challenge for teenagers and young adults.

“I saw about 10 doctors, trying to see if I could get diagnosed with something,” says Kiley Reitano, a 19-year-old Boston resident who was diagnosed with fibromyalgia five years ago, as a high school freshman. She blogs about living with chronic illnesses at The Spoonie.

Reitano says that her doctors seemed to view a diagnosis of fibromyalgia as something to be avoided. “They didn’t want me to feel limited with a disease that probably wouldn’t go away,” she remembers. “But I really just wanted answers at that point, and didn’t really care what they were.”

Living with fibromyalgia during high school wasn’t easy for Reitano. “While people my age were having normal experiences, I was dealing with this,” she notes. “You get anxious and depressed thinking that you’re not normal, like any high schooler would, but, like, times 10 because you have a chronic illness.”

Currently, Reitano is studying psychology as a college undergraduate, with the hope of becoming an art therapist — a nod to the role art has played in helping her cope with her condition. She’s taking classes online to minimize the risk of missing class due to her health issues.

One upside of taking classes online, Reitano says, is that she’ll graduate sooner. But she recognizes that her condition also sets her apart socially, something that she’s learned to make peace with.

“It’s definitely become my norm, and I know how to deal with it now,” she says. But at times, she says, it has been difficult “just trying to accept the fact that this is my life — especially when I was younger and first starting out with it.”

Dealing With Fibromyalgia in Mid-Career

Dealing with a diagnosis of fibromyalgia while working a busy full-time job also presents unique challenges, as Julianne Davis — a 38-year-old resident of Newbury Park, California, who works in a corporate legal department and was diagnosed with fibromyalgia a little over a year ago — has learned.

Since the onset of her symptoms and her diagnosis, Davis has found it more difficult to get refreshing sleep at night. She tries to increase her sleep quality through regular meditation. “You put the phone away, you turn off your stuff, and you get in that calm place,” she says.

Even when she’s well rested at work, Davis often has to deal with fatigue and brain fog. “I have to write everything down” to help her remember tasks, she says — and even then, “things sort of slip through the cracks sometimes.”

While regular walking can help with fatigue, “Some days, I walk for 20 minutes, and my back is in pain,” she says. Regularly scheduled chiropractic and massage appointments, several times each week, help reduce pain and discomfort.

Adjusting to these new routines hasn’t always been easy. “I think in the beginning, I was putting too much pressure on myself to be like I was two or three years ago,” says Davis. “I’ve become better at just listening to my own body, but that was a big transition for me, letting go of what I think I’m supposed to be.”

Fibromyalgia in Middle Age and Beyond

The onset of fibromyalgia symptoms started around menopause for Robin Dix, a 62-year-old New Hampshire resident who was diagnosed with fibromyalgia eight years ago. She writes a column called Through the Fog at Fibromyalgia News Today.

“Initially, my main symptom was fatigue, more than pain,” she says. But “Over the years, it’s kind of balanced out” to include both.

One factor in her fatigue level, Dix says, is the other illnesses she has developed over the years — including chronic fatigue, adrenal fatigue, underactive thyroid, irritable bowel syndrome (IBS), and gastroesophageal reflux disease (GERD).

“For me it’s gotten worse, so it feels like age has something to do with it,” says Dix. She has also experienced increased muscle weakness in her legs, which makes walking difficult.

“It’s hard to know how interconnected things are,” Dix admits, but notes that “The piece I know is fibro, and nothing else, is overall body pain. It’s not that severe for me, but it’s always there. It’s kind of like background music.”

Brain fog is also a challenge for Dix. “Initially the brain fog wasn’t as bad. It feels like it’s worse now, but part of that might just be getting older,” she says.

While most doctors say that fibromyalgia isn’t a progressive disease, says Dix, “For a lot of people, myself included, our symptoms change over the years.” This may be due, of course, to the onset of other health conditions related to age.

The result of all these symptoms, for Dix, is that sometimes it’s necessary to stay at home rather than see family and friends. “When you have to cancel plans, it’s very lonely,” she says. “You can become very isolated.”

But like her younger peers with fibromyalgia, Dix has found that the internet can provide a social outlet and support. “There are a lot of places online where people can connect, and it makes you feel so much less alone,” she says. “I think that’s so important.”

Migraines, sensitivity to touch, fatigue and pain all over…that’s what folks with fibromyalgia deal with. For a long time, patients and doctors were frustrated that there were no definitive solutions for this often unbearable condition.

Well, researchers looked into what people were doing to treat their pain—from meditation and exercise to prescription drugs—and published what they found. Here’s what works (and what doesn’t). What have you tried?

What works for fibromyalgia pain

You might be surprised to know that it’s not medications, but general lifestyle changes and exercise, that are most effective for fibromyalgia pain.

Aerobic exercise

Aerobic conditioning and training (preferably supervised by a trainer or physical therapist) is the best possible treatment of fibromyalgia pain. These include exercises that get your heart rate up like walking, hiking, running, swimming, spinning, dancing and kickboxing.

Improving sleep hygiene

“Sleep hygiene” is the term used to describe good sleep habits, and anything that affects your quality of sleep can affect how your body experiences pain. Many sleep hygiene tips are self-explanatory (like avoiding caffeine at night), but here’s a quick reminder of some things you can do:

  • Go to bed at the same time every night, including weekends.
  • Prep your bedroom. Make sure it’s quiet, dark and relaxing, and leave electronic devices in another room.
  • Avoid large meals, caffeine and alcohol right before bed.
  • Exercise every day. Regular exercise, especially in natural light, can get your body ready to sleep at night.

Cognitive behavioral therapy (CBT)

Cognitive behavioral therapy is a form of therapy used to improve mental health, and can be helpful for those coping with chronic pain. Ask your primary care doctor for a referral or look online at the Psychology Today Therapist Finder to find a therapist near you who takes your insurance.

Acupuncture

While the studies for acupuncture and fibromyalgia are somewhat mixed, many suggest that acupuncture has benefits. The downside here is cost as many insurance plans don’t cover acupuncture, but it’s worth calling your plan administrator to check anyway.

Meditation

Meditative exercises like tai chi have been shown to help with fibromyalgia pain. If you don’t have access to an occupational or physical therapist who is trained in tai chi practice, other forms of meditation can help too. Meditation apps like Headspace, Buddhify or Calm have made it easier to learn basic meditation techniques and practice them daily on your own.

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What probably doesn’t work for fibromyalgia pain

Medications commonly prescribed for fibromyalgia pain include Cymbalta (duloxetine), Lyrica (pregabalin), Flexeril (cyclobenzaprine), Savella (milnacipran), low-dose amitriptyline and Ultram (tramadol). But, these should probably not be your first option for treatment. In research studies, they showed little evidence for any benefit.

What you should NOT use for fibromyalgia pain

These medications, while sometimes prescribed for pain, should not be used for fibromyalgia. They don’t work for the type of pain that fibromyalgia causes, and could be harmful.

NSAIDs

NSAIDs (non-steroidal anti-inflammatory drugs) like naproxen (Aleve) and ibuprofen (Motrin, Advil) don’t appear to work for fibromyalgia pain.

Opioid narcotics

Opioid narcotics are powerful pain-relieving medications that work for some types of pain, but they don’t work for fibromyalgia. They can also be harmful—and addictive. These drugs include hydromorphone, hydrocodone and fentanyl.

MAO inhibitors

MAO inhibitors are best known as a class of antidepressants, but they’ve also been tested as a form of treatment for fibromyalgia pain. They aren’t really used at all anymore, but include rasagiline (Azilect), selegiline (Eldepryl, Zelapar) and tranylcypromine (Parnate).

How do I know if I have fibromyalgia?

The Fibromyalgia Rapid Screening Tool (FiRST) is a self-administered questionnaire developed by the French Society of Rheumatology that can fairly accurately help most people detect whether they have fibromyalgia. FiRST consists of questions covering fibromyalgia symptoms like fatigue, pain characteristics, non-painful abnormal sensations and sleep problems.

Dr O.

  • Understanding Fibromyalgia

    For more about our Fibromyalgia Management Program or an appointment, call 216.444.0564 or 800.223.2273 ext 40564.

    • You may also obtain a brochure of the program.

    For More Information

    On Fibromyalgia

    For more about our Fibromyalgia Management Program or an appointment, call 216.444.0564 or 800.223.2273 ext 40564.

    • For general information about fibromyalgia

    You may also obtain a brochure of the program.

    On Cleveland Clinic

    Modeled after the most modern pain rehabilitation programs in the U.S., Cleveland Clinic’s Fibromyalgia Management Program addresses all factors contributing to your discomfort. It’s about more than short-term pain relief. It’s about life-changing, long-term improvement.

    Our multidisciplinary program includes:

    • Evaluation by a rheumatologist: One of our fibromyalgia experts will evaluate the cause of your pain and any factors affecting it, such as sleep problems, depression, arthritis or other musculoskeletal issues. Your doctor will customize your treatment, addressing anything contributing to your pain and fatigue.
    • Cognitive behavioral therapy: Learn how to better manage your pain and stress during group sessions. We can help you improve your quality of life through self-talk, positive coping skills, symptom reduction skills, mindfulness meditation and relaxation techniques.
    • Physical therapy: Our physical therapy team will evaluate you and design a personalized program that you can do at home, so you can become more active and function better.

    Cleveland Clinic’s rheumatologists are leaders in research and specialize in the evaluation, diagnosis and treatment of the conditions that affect the bones, muscles, joints and skin. Our team works with patients and their families to create individualized treatment plans for their rheumatic diseases. Rheumatology at Cleveland Clinic was rated best in Ohio and second in the nation by U.S. News & World Report.

    On Your Health

    MyChart®: Your Personal Health Connection, is a secure, online health management tool that connects Cleveland Clinic patients with their personalized health information. All you need is access to a computer. For more information about MyChart®, call toll-free at 866.915.3383 or send an email to: [email protected]

    A remote second opinion may also be requested from Cleveland Clinic through the secure Cleveland Clinic MyConsult® website. To request a remote second opinion, visit eclevelandclinic.org/myConsult.

    Reviewed: 10/13

    This information is provided by Cleveland Clinic as a convenience service only and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. Please remember that this information, in the absence of a visit with a health care professional, must be considered as an educational service only and is not designed to replace a physician’s independent judgment about the appropriateness or risks of a procedure for a given patient. The views and opinions expressed by an individual in this forum are not necessarily the views of the Cleveland Clinic institution or other Cleveland Clinic physicians. ©Copyright 1995-2013. The Cleveland Clinic Foundation. All rights reserved.

    • Anti-inflammatory medicines, to ease pain and help you sleep
    • Other pain medicines
    • Medicines approved for treating fibromyalgia (duloxetine, pregabalin, and milnacipran)
    • Medicines to ease depression (antidepressants)
    • Exercise and physical therapy, to stretch muscles and improve cardiovascular fitness
    • Relaxation methods
    • Heat treatments
    • Cold treatments once in a while
    • Massage

    Talk with your healthcare providers about the risks, benefits, and possible side effects of all medicines.

    Living with fibromyalgia

    Fibromyalgia is a chronic condition. But you can manage it by working with your healthcare provider. In addition to medicines, lifestyle changes can help symptoms. These include getting enough sleep and exercise.

    When should I call my healthcare provider?

    If your symptoms get worse or you have new symptoms, tell your healthcare provider.

    Key points about fibromyalgia

    • Fibromyalgia is a chronic condition that causes pain in muscles and soft tissues all over the body.
    • Researchers think it may be linked to sleep problems, stress, or immune, endocrine, or biochemical problems.
    • Symptoms may also include lack of energy (fatigue), sleep problems, depression, headaches, and other problems.
    • There is no cure, but symptoms can be managed.
    • Treatment can include medicine, exercise, relaxation, heat or cold, and massage.

    Next steps

    Tips to help you get the most from a visit to your healthcare provider:

    • Know the reason for your visit and what you want to happen.
    • Before your visit, write down questions you want answered.
    • Bring someone with you to help you ask questions and remember what your provider tells you.
    • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
    • Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
    • Ask if your condition can be treated in other ways.
    • Know why a test or procedure is recommended and what the results could mean.
    • Know what to expect if you do not take the medicine or have the test or procedure.
    • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
    • Know how you can contact your provider if you have questions.

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