What's Going On? A Simple Explanation of Fibromyalgia
Making Sense of a Complex Disorder, For Those Who Don't Have It
By Adrienne Dellwo, About.com
Updated: June 05, 2009
About.com Health's Disease and Condition content is reviewed by the Medical Review Board
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Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.
If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.
Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.
The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.
Understanding the Pain of Fibromyalgia
Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't know show, and instead of 20 guests, you get 100. You're overwhelmed.
That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.
When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into very real pain.
Other substances in the patient's brain amplify signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.
Understanding the Ups & Downs of Fibromyalgia
Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.
Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.
Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel
Understanding Stress & Fibromyalgia
Some people think FM patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.
The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.
People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.
Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.
Related terms
· Cortisol
· HPA Axis
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:
· insomnia (difficulty getting to sleep or staying asleep)
· Inability to reach or stay in a deep sleep
· Sleep apnea (breathing disturbances that can wake the person repeatedly)
· Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
· Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)
Fibromyalgia In a Nutshell
A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.
Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
· It's NOT psychological "burn out" or depression.
· It's NOT laziness.
· It's NOT whining or malingering.
· It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.
Fibromyalgia
Fibromyalgia — Comprehensive overview covers symptoms, treatment of this chronic condition characterized by widespread pain.
Definition
Tender points
You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.
Symptoms
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.
Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
Back of the head
Between shoulder blades
Top of shoulders
Front sides of neck
Upper chest
Outer elbows
Upper hips
Sides of hips
Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Co-existing conditions
Many people who have fibromyalgia also may have:
Chronic fatigue syndrome
Depression
Endometriosis
Headaches
Irritable bowel syndrome (IBS)
Lupus
Osteoarthritis
Post-traumatic stress disorder
Restless legs syndrome
Rheumatoid arthritis
Causes
Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:
Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.
Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.
Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.
Risk factors
Risk factors for fibromyalgia include:
Your sex. Fibromyalgia occurs more often in women than in men.
Age. Fibromyalgia tends to develop during early and middle adulthood. But it can also occur in children and older adults.
Disturbed sleep patterns. It's unclear whether sleeping difficulties are a cause or a result of fibromyalgia. But people with sleep disorders — such as nighttime muscle spasms in the legs, restless legs syndrome or sleep apnea — often have fibromyalgia.
Family history. You may be more likely to develop fibromyalgia if a relative also has the condition.
Rheumatic disease. If you have a rheumatic disease, such as rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.
Complications
Fibromyalgia isn't progressive and generally doesn't lead to other conditions or diseases. It can, however, lead to pain, depression and lack of sleep. These problems can then interfere with your ability to function at home or on the job, or maintain close family or personal relationships. The frustration of dealing with an often-misunderstood condition also can be a complication of the condition.
Preparing for your appointment
Because many of the signs and symptoms of fibromyalgia are similar to various other disorders, you may see several doctors before receiving a diagnosis. Your family physician may refer you to a rheumatologist, a doctor who specializes in the treatment of arthritis and other inflammatory conditions.
What you can do
You may want to write a list that includes:
Detailed descriptions of your symptoms
Information about medical problems you've had in the past
Information about the medical problems of your parents or siblings
All the medications and dietary supplements you take
Questions you want to ask the doctor
What to expect from your doctor
In addition to a physical exam, your doctor may check your neurological health by testing your:
Reflexes
Muscle strength
Muscle tone
Senses of touch and sight
Coordination
Balance
Tests and diagnosis
Tender points
The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:
Widespread pain lasting at least three months
At least 11 positive tender points — out of a total possible of 18
Tender points
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor's fingernail bed. These 18 tender points are a hallmark for fibromyalgia.
Blood tests
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
Complete blood count
Erythrocyte sedimentation rate
Thyroid function tests
Treatments and drugs
In general, treatments for fibromyalgia include both medication and self-care. The emphasis is on minimizing symptoms and improving general health.
Medications
Medications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:
Analgesics. Acetaminophen (Tylenol, others) may ease the pain and stiffness caused by fibromyalgia. However, its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that may be taken with or without acetaminophen. Your doctor may recommend nonsteroidal anti-inflammatory drugs (NSAIDs) — such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen sodium (Aleve, others) — in conjunction with other medications. NSAIDs haven't proved to be as effective in managing the pain in fibromyalgia when taken by themselves.
Antidepressants. Your doctor may prescribe amitriptyline to help promote sleep. Fluoxetine (Prozac) in combination with amitriptyline is effective in some people. Duloxetine (Cymbalta) may help ease the pain and fatigue associated with fibromyalgia. And milnacipran (Savella) was recently approved by the Food and Drug Administration for the treatment of fibromyalgia symptoms.
Anti-seizure drugs. Medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) is the first drug approved by the Food and Drug Administration to treat fibromyalgia.
Therapy
Physical therapy. Specific exercises can help restore muscle balance and may reduce pain. Stretching techniques and the application of hot or cold also may help.
Counseling. Cognitive behavioral therapy seeks to strengthen your belief in your abilities and teaches you methods for dealing with stressful situations. Therapy is provided through individual counseling, classes, and with tapes, CDs or DVDs, and may help you manage your fibromyalgia.
Lifestyle and home remedies
Self-care is critical in the management of fibromyalgia.
Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.
Alternative medicine
Complementary and alternative therapies for pain and stress management aren't new. Some, such as meditation and yoga, have been practiced for thousands of years. But their use has become more popular in recent years, especially with people who have chronic illnesses, such as fibromyalgia.
Several of these treatments do appear to safely relieve stress and reduce pain, and some are gaining acceptance in mainstream medicine. But many practices remain unproved because they haven't been adequately studied. Some of the more common complementary and alternative treatments promoted for pain management include:
Acupuncture. Acupuncture is a Chinese medical system based on restoring normal balance of life forces by inserting very fine needles through the skin to various depths. According to Western theories of acupuncture, the needles cause changes in blood flow and levels of neurotransmitters in the brain and spinal cord. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit.
Chiropractic care. This treatment is based on the philosophy that restricted movement in the spine may lead to pain and reduced function. Spinal adjustment (manipulation) is one form of therapy chiropractors use to treat restricted spinal mobility. The goal is to restore spinal movement and, as a result, improve function and decrease pain. Chiropractors manipulate the spine from different positions using varying degrees of force. Manipulation doesn't need to be forceful to be effective. Chiropractors may also use massage and stretching to relax muscles that are shortened or in spasm. Because manipulation has risks, always go to properly trained and licensed practitioners.
Massage therapy. This is one of the oldest methods of health care still in practice. It involves use of different manipulative techniques to move your body's muscles and soft tissues. The therapy aims to improve blood circulation in the muscle, increasing the flow of nutrients and eliminating waste products. Massage can reduce your heart rate, relax your muscles, improve range of motion in your joints and increase production of your body's natural painkillers. It often helps relieve stress and anxiety. Although massage is almost always safe, avoid it if you have open sores, acute inflammation or circulatory problems.
Coping and support
Besides dealing with the pain and fatigue of fibromyalgia, you may also have to deal with the frustration of having a condition that's often misunderstood. In addition to educating yourself about fibromyalgia, you may find it helpful to provide your family, friends and co-workers with information.
It's also helpful to know that you're not alone. Organizations such as the Arthritis Foundation and the American Chronic Pain Association provide educational classes and support groups. These groups can often provide a level of help and advice that you might not find anywhere else. They can also help put you in touch with others who have had similar experiences and can understand what you're going through.
Related links:
Acupuncture
TENS therapy: An option for fibromyalgia treatment?
Massage: Get in touch with its many health benefits
Milnacipran (Savella) for fibromyalgia: What makes it different?
Fibromyalgia: Can it cause elevated ESR and CRP levels?
Fibromyalgia treatment: Does gabapentin relieve symptoms?
Cupping therapy: Can it relieve fibromyalgia pain?
Is fibromyalgia hereditary?
Fibromyalgia misconceptions: Interview with a Mayo Clinic expert
Fibromyalgia pain: Options for coping
Fibromyalgia symptoms or not? Understand the fibromyalgia diagnosis process
