Fibromyalgia

Fibromyalgia (fye-bro-mye-AL-ja) is a disorder that causes aches and pain all over the body. People with fibromyalgia also have "tender points" throughout their bodies. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs that hurt when pressure is put on them.

In addition to pain, people with fibromyalgia could also have:

• Cognitive and memory problems (sometimes called “fibro fog”)
• Trouble sleeping
• Morning stiffness
• Headaches
• Irritable bowel syndrome
• Painful menstrual periods
• Numbness or tingling of hands and feet
• Restless legs syndrome
• Temperature sensitivity
• Sensitivity to loud noises or bright lights

Fibromyalgia affects as many as 5 million Americans ages 18 and older. Most people with fibromyalgia are women (about 80–90 percent). However, men and children also can have the disorder. Most people are diagnosed during middle age.

Fibromyalgia can occur by itself, but people with certain other diseases, such as rheumatoid arthritis, lupus, and other types of arthritis, may be more likely to have it. Individuals who have a close relative with fibromyalgia are more likely to develop it themselves.

The causes of fibromyalgia are not known. Researchers think a number of factors might be involved. Fibromyalgia can occur on its own, but has also been linked to:

• Having a family history of fibromyalgia
• Being exposed to stressful or traumatic events, such as
  • Car accidents
  • Injuries to the body caused by performing the same action over and over again (called “repetitive” injuries)
  • Infections or illnesses
  • Being sent to war

People with fibromyalgia often see many doctors before being diagnosed. One reason for this may be that pain and fatigue, the main symptoms of fibromyalgia, also are symptoms of many other conditions. Therefore, doctors often must rule out other possible causes of these symptoms before diagnosing fibromyalgia. Fibromyalgia cannot be found by a lab test.

A doctor who knows about fibromyalgia, however, can make a diagnosis based upon two criteria:

1. A history of widespread pain lasting more than 3 months. Pain must be present in both the right and left sides of the body as well as above and below the waist.
2. Presence of tender points. The body has 18 sites that are possible tender points. For fibromyalgia diagnosis a person must have 11 or more tender points. For a point to be “tender,” the patient must feel pain when pressure is put on the site. People who have fibromyalgia may feel pain at other sites, too, but those 18 sites on the body are used for diagnosis.

Your doctor may try to rule out other causes of your pain and fatigue. Testing for some of these things may make sense to you. For instance, you may find it reasonable that your doctor wants to rule out rheumatoid arthritis, since that disease also causes pain. Testing for other conditions — such as lupus, multiple sclerosis, or sleep apnea — may make less sense to you. But fibromyalgia can mimic or even overlap many other conditions. Talk with your doctor. He or she can help you understand what each test is for and how each test is part of making a final diagnosis.

Fibromyalgia can be hard to treat. It's important to find a doctor who has treated others with fibromyalgia. Many family doctors, general internists, or rheumatologists can treat fibromyalgia. Rheumatologists are doctors who treat arthritis and other conditions that affect the joints and soft tissues.

Treatment often requires a team approach. The team may include your doctor, a physical therapist, and possibly other health care providers. A pain or rheumatology clinic can be a good place to get treatment. Treatment for fibromyalgia may include the following:

• Pain management. Three medicines have been approved by the U.S. Food and Drug Administration (FDA) to treat fibromyalgia. These are pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella). Other medications are being developed and may also receive FDA approval in the future. Your doctor may also suggest non-narcotic pain relievers, low-dose antidepressants, or other classes of medications that might help improve certain symptoms.
• Sleep management. Getting the right amount of sleep at night may help improve your symptoms. Here are tips for good sleep:
  • Keep regular sleep habits. Try to get to bed at the same time and get up at the same time every day — even on weekends and vacations.
  • Avoid caffeine and alcohol in the late afternoon and evening.
  • Time your exercise. Regular daytime exercise can improve nighttime sleep. But avoid exercising within 3 hours of bedtime, which can be stimulating, keeping you awake.
  • Avoid daytime naps. Sleeping in the afternoon can interfere with nighttime sleep. If you feel you cannot get by without a nap, set an alarm for 1 hour. When it goes off, get up and start moving.
  • Reserve your bed for sleeping. Watching the late news, reading a suspense novel, or working on your laptop in bed can stimulate you, making it hard to sleep.
  • Keep your bedroom dark, quiet, and cool.
  • Avoid liquids and spicy meals before bed. Heartburn and late-night trips to the bathroom do not lead to good sleep.
  • Wind down before bed. Avoid working right up to bedtime. Do relaxing activities, such as listening to soft music or taking a warm bath, that get you ready to sleep. (A warm bath also may soothe aching muscles.)

• Psychological support. Living with a chronic condition can be hard on you. If you have fibromyalgia, find a support group. Counseling sessions with a trained counselor may improve your understanding of your illness.
• Other treatments. Complementary therapies may help you. Talk to your physician before trying any alternative treatments. These include:
  • Physical therapy
  • Massage
  • Myofascial release therapy
  • Water therapy
  • Light aerobics
  • Acupressure
  • Applying heat or cold
  • Acupuncture
  • Yoga
  • Relaxation exercises
  • Breathing techniques
  • Aromatherapy
  • Cognitive therapy
  • Biofeedback
  • Herbs
  • Nutritional supplements
  • Osteopathic or chiropractic manipulation

Besides taking medicine prescribed by your doctor, there are many things you can do to lessen the impact of fibromyalgia on your life. These include:

• Getting enough sleep. Getting enough sleep and the right kind of sleep can help ease the pain and fatigue of fibromyalgia. Most adults need seven to eight hours of "restorative" sleep per night. Restorative sleep leaves you feeling well-rested and ready for your day to start when you wake up. It is hard for people with fibromyalgia to get a good night's sleep. It is important to discuss any sleep problems with your doctor, who can recommend treatment for them.
• Exercising. Although pain and fatigue may make exercise and daily activities difficult, it is crucial to be as physically active as possible. Research has repeatedly shown that regular exercise is one of the most effective treatments for fibromyalgia. People who have too much pain or fatigue to do hard exercise should just begin to move more and become more active in routine daily activities. Then they can begin with walking (or other gentle exercise) and build their endurance and intensity slowly.
• Making changes at work. Most people with fibromyalgia continue to work, but they may have to make big changes to do so. For example, some people cut down the number of hours they work, switch to a less demanding job, or adapt a current job. If you face obstacles at work, such as an uncomfortable desk chair that leaves your back aching or difficulty lifting heavy boxes or files, your employer may make changes that will enable you to keep your job. An occupational therapist can help you design a more comfortable workstation or find more efficient and less painful ways to lift. A number of federal laws protect the rights of people with disabilities.
• Eating well. Although some people with fibromyalgia report feeling better when they eat or avoid certain foods, no specific diet has been proven to influence fibromyalgia. Of course, it is important to have a healthy, balanced diet. Not only will proper nutrition give you more energy and make you generally feel better, it will also help you avoid other health problems.

Fibromyalgia is a chronic condition, meaning it lasts a long time — possibly a lifetime. However, it may be comforting to know that fibromyalgia is not a progressive disease. It is never fatal, and it will not cause damage to the joints, muscles, or internal organs. In many people, the condition does improve over time.

Chronic fatigue syndrome (CFS) and fibromyalgia are alike in many ways. In fact, it is not uncommon for a person to have both fibromyalgia and CFS. Some experts believe that fibromyalgia and CFS are in fact the same disorder, but expressed in slightly different ways. Both CFS and fibromyalgia have pain and fatigue as symptoms.

The main symptom of CFS is extreme tiredness. CFS often begins after having flu-like symptoms. But people with CFS do not have the tender points that people with fibromyalgia have. To be diagnosed with CFS, a person must have:

1. Extreme fatigue for at least 6 months that cannot be explained by medical tests and
2. At least four or more of the following symptoms:
   • Forgetting things or having a hard time focusing
   • Feeling tired even after sleeping
   • Muscle pain or aches
   • Pain or aches in joints without swelling or redness
   • Feeling discomfort or "out-of-sorts" for more than 24 hours after being active
   • Headaches of a new type, pattern, or strength
   • Tender lymph nodes in the neck or under the arm
   • Sore throat

Many experts in fibromyalgia do not suggest patients go on disability. These experts have found that if patients stop working, they:

• Stop moving as much during the day
• Lose contact with co-workers
• Lose a "sense of purpose" in life

All of these things can make a patient feel more alone and depressed. These three things tend to make fibromyalgia symptoms worse. Deciding to go on disability is a hard choice that you should talk about with your doctor or nurse.

However, if you cannot work because of your fibromyalgia, contact the Social Security Administration for help with disability benefits. You may qualify for disability benefits through your employer or the Federal Government. Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI) are the largest Federal programs providing financial assistance to people with disabilities. Although the medical requirements for eligibility are the same under the two programs, the way they are funded is different. SSDI is paid by Social Security taxes, and those who qualify for assistance receive benefits based on how much they have paid into the system. SSI is funded by general tax revenues, and those who qualify receive payments based on financial need. For information about the SSDI and SSI programs, contact the Social Security Administration at 800-772-1213.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases sponsors research to help understand fibromyalgia and find better ways to diagnose, treat, and prevent it. Researchers are studying:

• Why people with fibromyalgia feel a lot of pain
• How exercise can help patients with fibromyalgia
• Medicines and behavioral treatments

For more information about fibromyalgia, call the OWH Helpdesk at 800-994-9662 or contact the following organizations:

• Arthritis Foundation 
  Phone: 800-283-7800
• National Fibromyalgia Partnership, Inc. 
  Phone: 866-725-4404
• National Institute of Arthritis and Musculoskeletal and Skin Diseases 
  Phone: 877-226-4267