Hurting all over

You probably look healthy to those who don’t know you. But in fact, you have pain that has no boundaries. It started on the neck and shoulders, but it soon radiated out from there. Now, it seems like you just hurt all over. At times, you describe your discomfort as deep muscular aching, but sometimes it feels more like burning, throbbing, shooting or stabbing pain. It’s there all the time and it’s exhausting. It’s often worse in the morning, especially after a night of disturbed sleep. And symptoms may wax and wane. For a long time, you didn’t know what was wrong with you, but not anymore. Your symptoms now have a name – fibromyalgia.

Once referred to as fibrositis or fibromyositis, fibromyalgia affects millions of people – about 80 percent to 90 percent of them women. "Fibromyalgia is a mysterious illness with a long name and a bad reputation," says Dr. Ian K. Smith, medical writer of Time magazine. But the reputation is undeserved. For years, patients who went to their doctors complaining of unexplainable pain, stiffness and fatigue were told that their symptoms were psychosomatic. Now, we know that fibromyalgia is a real medical syndrome. And it is being taken more and more seriously these days.

If you suspect you may have fibromyalgia, here’s how your doctor will go about diagnosing and treating your condition.

Common Symptoms

Fibromyalgia is a chronic condition that leaves you with widespread pain and fatigue. In fact, the word "fibromyalgia" means pain in your muscles, ligaments and tendons – the fibrous tissues in your body. It’s similar to the pain of arthritis but your joints are not affected and they don’t become deformed or deteriorate over time. Fibromyalgia pain can vary depending on the weather, stress, physical activity or just the time of day.

Besides pain and fatigue, you may also experience:

• Sleep disturbances. Most people with fibromyalgia wake up tired and feel unrefreshed, even though they seem to get plenty of sleep. Sleep studies suggest this is due to a sleep disorder called alpha-wave interrupted sleep pattern, a condition in which deep sleep (stage 4) is frequently interrupted by bursts of brain activity similar to wakefulness.

• Irritable Bowel Syndrome (IBS). About 40 to 70 percent experience constipation, diarrhea, abdominal pain and bloating – the hallmark of IBS.

• Chronic headaches and facial pain. About 50 percent have recurrent migraine or tension-type headaches, which may be related to tenderness in the neck and shoulders. As many as 90 percent experience jaw and facial pain which may be associated with tenderness in the muscles and ligaments around the jaw joint – often called TMJ (temporomandibular joint) syndrome.

• Sensitivity to environment. About 50 percent report being sensitive to odors, noise, bright lights, various foods and weather.

• Other symptoms. These include numbness or tingling sensations in the extremities, difficulty concentrating, pelvic pain, chest pain, morning stiffness, irritable bladder, dry eyes and mouth, and dizziness.

Making The Diagnosis

Despite the many symptoms that have been attributed to fibromyalgia, only two are considered mandatory for making a diagnosis. According to the criteria set by the American College of Rheumatology, you must have at least 11 of 18 specific areas on your body – called "tender points" – that are intensely painful upon pressure (see illustration for location of the 18 tender points). And this widespread pain must persist for at least three months.

Sounds simple but it’s not. Part of the problem in diagnosing fibromyalgia is that the symptoms often mimic other conditions which must be excluded by medical testing. For example, between a quarter and a third of people with fibromyalgia experience depression. This may result from fibromyalgia or be a contributing cause. Some confusion persists, no doubt, because some of the symptoms of fibromyalgia – fatigue, sleep problems, and disturbances in mood and concentration – are also present in depression.

Depressed feelings that accompany fibromyalgia may be a reaction to the pain and fatigue that you deal with on a daily basis. What’s more, if your symptoms are misunderstood by your family or by your doctor, you may also have feelings of rejection and alienation, leading to a depressed mood. If you’re experiencing periods of depression along with fibromyalgia, you may benefit from treatment for depression, including counseling, medication or support groups. This treatment will help you learn how to cope with your chronic illness and enhance your own capacity to deal with your symptoms.

No Single Cause

Doctors believe there isn’t one single cause of fibromyalgia. Rather, there may be a number of contributing factors including:

• Chemical changes in the brain. Studies suggest that some people with fibromyalgia have alterations in the regulation of certain brain chemicals called neurotransmitters – in particular, serotonin (which is linked to depression, migraine and gastrointestinal distress) and substance P (which appears to be elevated in the spinal fluid of those with fibromyalgia). Other studies show abnormal levels of a hormone called somatomedin C in the spinal fluid. This hormone may cause a heightened sensitivity to pain.

• Sleep disturbances. Some people theorize that disturbed sleep patterns may be at the root of many cases of fibromyalgia.

• Familial susceptibility. Studies indicate that you may be more likely to have fibromyalgia if your mother has the condition.

• Injury or physical trauma. An injury in the upper spinal region, for example, has been shown to trigger the development of fibromyalgia in some people.

• Infection with a virus or bacteria. Although some believe this may be a triggering event, no one has identified the Epstein-Barr virus, parvovirus, other viruses or bacteria as playing a role.

Standard Treatment Strategies

The best approach is a multifaceted one, including traditional and complementary approaches. Treatments are usually long-term – maybe even for life – and relapses may occur. Patience is required, but the more you learn about and participate in your own treatment, the better you’re likely to feel. Treatments include:

• Physical activity. Regular exercise is a must to ease muscles and improve range of motion, but begin slowly. Try stretching and low-impact aerobics such as swimming, water therapy, walking, or using a stationary bike. Keep up the exercise even on days when you’re tired and aching.

• Physical therapy. This may include massage, application of ice, heat and ultrasound, and posture and movement training.

• Sleep and diet. Establish regular sleep routines and balance work with regular rest periods throughout the day. Maintain a healthy diet low in animal fat and high in fiber. Include lots of fruits and vegetables. If you’re overweight, losing weight can significantly ease your pain.

• Medications. To boost your body’s serotonin levels and help improve your sleep quality, your doctor may prescribe low doses of antidepressants such as nortriptyline, fluoxetine (or a combination of these two), sertraline or paroxetine. To help with pain, you may try acetaminophen or non-steroidal anti-inflammatory drugs such as ibuprofen or aspirin.

Complementary Therapies

You may also find varying amounts of relief with therapies such as:

• Stress management. These include meditation, deep breathing, and visualization techniques.

• Biofeedback. To help you train your muscles to relax.

• Acupuncture. To help reduce the pain.

• Music, humor and hobbies. Finding activities you enjoy will help you relax and focus on positive events.

Feeling Better

Over the long term, chronic pain may affect your self-esteem and your relationships with others. The key to feeling better is understanding your condition and committing to the lifestyle changes that bring you relief.