Fibromyalgia is a complex condition that's difficult to understand, even for some people with a medical degree. Because it involves the brain and nervous system, FM can have an impact on virtually every part of the body.

If you're trying to understand this condition for the first time 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 FM must be a psychological problem. However, a host of scientific evidence 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.

We will try to help you understand and relate to what's going on in the body of someone with FM, in plain terms and without medical jargon.

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 FM. 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 FM, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why people with FM 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 FM 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 FM 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 FM 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.

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 FM, though, comes sleep disorders that make a good night's sleep a rarity. A person with FM 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. FM, 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.

FM 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.

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We all get tired. It's part of life, and especially part of modern life. Think for a moment about the last time you were really tired at work. It's harder to focus, harder to function, but you can push through it.

Now think back to the last time you were really sick with something like strep or the flu, too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you're sick like that, it's like your body just shuts down and demands that you rest.

There's a big difference between the two types of tired, right? That second kind of tired is what people with CFS/ME deal with every day. They're not just sleepy, and they can't just push through it. They're so wiped out that their bodies demand rest and sleep constantly.

Most people who are regularly tired can trace it to some aspect of their lives, they don't get enough sleep, they're too busy, they're under too much pressure, etc. People with CFS/ME, however, don't have an obvious cause of fatigue. Usually, they were perfectly healthy people one day and no longer healthy the next.

What Does Chronic Fatigue Syndrome Do to Your Body?

In most cases, CFS/ME comes on suddenly. While scientists don't yet know exactly what causes it, a growing pool of evidence points to a combination of genetic predisposition and exposure to viruses or toxins. Many cases start after a flu-like illness, but then some of the symptoms never go away.

What many experts believe is going on in the body of someone with CFS/ME is constant immune system activation, as if the body is trying to fend off illness. Working that hard all the time is a big drain on the body, which is part of the reason we all get so tired when we're sick.

Beyond Fatigue

As if that level of fatigue weren't enough to deal with, CFS/ME can bring a host of other symptoms. Experts recognize about 45 of them, and each person deals with a different mix of symptoms and levels of severity.

Common CFS/ME symptoms include:

• Sleep that isn't refreshing
• Muscle and joint aches
• Headaches
• Sore throat
• Swollen lymph glands
• Cognitive problems

The cognitive problems associated with CFS/ME are sometimes severe. Regardless of how intelligent the person is, he or she may become forgetful, be unable to recall common words, frequently lose a train of thought, or sometimes become confused. Simple tasks such as reading a newspaper, cooking a simple meal, or finding your car in a parking lot become daunting and overwhelming.

Well-meaning people frequently tell those with CFS/ME that they'd feel better if they'd get more exercise. Most people do get an energy boost from exertion, but people with CFS/ME don't. They have a symptoms called post-exertional malaise, which means that even small amounts of exertion can make all of their symptoms worse for a couple of days. Since deconditioning can add to the fatigue and weakness that CFS patients face, a gentle graded routine is one of the treatment recommendations.

Chronic Fatigue Syndrome, Disbelief, and the Need for Support

Imagine suddenly feeling sick and exhausted all the time and having someone tell you that you're not really sick. People with CFS/ME face that all the time. Some doctors say they're depressed or that it's all in their heads - they're just whiners or hypochondriacs. It's also common for them to tell someone, "I have CFS/ME," and hear something like, "I think I have that, too. It seems like I'm always tired."

Because we don't yet have a good diagnostic test for CFS/ME, sometimes it's hard for people with the condition to convince the people around them they're really sick. It can strain marriages, drive friends apart, and make work conditions especially stressful. People with CFS/ME often end up feeling isolated, which compounds the depression that frequently goes along with any debilitating illness.

Some people with CFS/ME find medications, supplements and life-style changes that help them feel better, but it's a long, difficult process of experimentation and not everyone finds things that make a big difference. So far, no drug is FDA approved for treating CFS/ME, and no treatment works for everyone.

Chronic fatigue syndrome 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.

CFS/ME is a serious, life-altering, frustrating, often misunderstood illness. What people with CFS/ME need most of all from those around them is emotional support and understanding.

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Misinformation can be as harmful as a misdiagnosis. The following are a few of the myths about Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) and the facts.

Myth 1: CFS/ME is a disease defined just by a group of symptoms. There are no objective abnormalities.

Many published studies^{4-5-6-7-8-9-10-11} report abnormalities of the central nervous system, autonomic nervous system, and immune system in patients with CFS/ME, abnormalities not present in comparison groups who are healthy or have other fatiguing illnesses.

Myth 2: Whenever one research group finds a biological abnormality in patients with CFS/ME, another research group can't find it.

With research on virtually all illnesses, there are always some reports in the research literature that conflict. The question with CFS/ME or any illness is: Counting all of the published reports^13-14 , and the numbers of patients in all of these reports, do the great majority of reports involving the great majority of patients find objective biological abnormalities? The answer for CFS/ME, with regard to studies of the nervous system and immune system, is yes.

Myth 3: CFS/ME only affects white and higher income individuals, and is a relatively rare disorder.

Recent evidence from community prevalence studies ^15-16 indicates that CFS/ME is not a YUPPIE disease, and in fact, it occurs more often among Latino and African-American minority groups and those with lower incomes. CFS/ME affects from 800,000 to one million individuals in the US, and thus represents one of the more common chronic health conditions.

Myth 4: Cognitive behavior therapy interventions can cure CFS/ME.

Cognitive behavior therapy is widely used to help people cope with chronic illnesses, both "physical" illnesses and psychological illnesses. While these types of psychological interventions can help patients with CFS/ME cope better with their symptoms and deal with the consequences of having a chronic health problem, these types of intervention do not cure the illness. ¹⁷

Myth 5: Patients with CFS/ME are either lazy or malingering.

There is no truth to this statement, and many patients with this condition would like nothing better than to have their old lifestyle back. They are very motivated and often go to many physicians to find a way of getting better. ¹⁸

Myth 6: All cases of CFS are caused by the Epstein-Barr Virus (EBV).

These are common misconceptions among primary care providers. The onset of CFS/ME is sometimes but not always linked with the recent presence of an infection. CFS/ME has been reported as following acute mononucleosis (a viral infection like EBV), Lyme disease (a bacterial infection) and Q fever (an infection with a different type of infectious agent).¹⁹

Myth 7: Patients with CFS/ME can be cured by exercise.

It is a myth that patients with CFS/ME can be cured by exercise, but it is also a myth that no one with CFS/ME can ever benefit from some physical activity. For some patients, a carefully monitored program incorporating paced and non-fatiguing activity can be used to strengthen and condition muscles. But it is worth noting that Black, O'Connor, and McCully (2005)²⁰ recently found that with an average 28% increase over baseline levels of daily physical activity over for a four week period, patients with CFS/ME indicated they had worsening overall mood, muscle pain intensity and time spent each day with fatigue. ²¹

Myth 8: CFS/ME is difficult to diagnose.

Actually it is pretty straightforward to diagnose when familiar with the case definition. It is, however, important to determine whether the Fukuda et al. (1994) ²² or the Canadian case definition of CFS/ME is being used (Caruthers et al., 2003). ²³

Misinformation can be as harmful as a misdiagnosis. The following are a few of the myths about Fibromyalgia (FM) and the facts.

Myth 1: Fibromyalgia is not real.

Fibromyalgia is recognized as a medical condition by well-known, expert groups:

• National Institutes of Health
• American Medical Association
• American College of Rheumatology
• Food and Drug Administration
• Social Security Administration
• And all major insurers

The cause of the condition is not known, and there is no cure, but it can be diagnosed and treated.

Myth 2: Fibromyalgia is caused by depression.

Fibromyalgia (FM) is not caused by depression. FM is a very painful and frustrating illness to have. FM symptoms like chronic headaches, sleep disorders, and muscle aches and pains can make living with the illness difficult and tiresome. Lack of understanding from the medical community, as well as friends & family members, can also make many FM sufferers feel isolated and alone.

As a result, many people with FM experience chronic depression alongside their illness. Depression can leave you feeling alone, anxious, and extremely sad, and can make FM even more troublesome to deal with. It is important to recognize the symptoms of depression so that you can seek appropriate treatment from your health care provider.

Myth 3: Fibromyalgia is a new and rare condition.

Fibromyalgia has been recognized by healthcare providers for a long time. Physicians wrote about "muscular rheumatism," a condition involving fatigue, stiffness, aches, pains and sleep disturbances back in the 1800's. The current term was coined in 1976. ¹ The American College of Rheumatology set out its diagnostic criteria in 1990. Fibromyalgia is one of this country's most common types of chronic widespread pain.

Myth 4: Fibromyalgia affects only women and older adults.

Fibromyalgia strikes both sexes and people of all ages. ² The condition occurs in about one in 30 women. It strikes one in 200 men. The risk of developing Fibromyalgia increases the older one gets.

Myth 5: Fibromyalgia is deadly.

Fibromyalgia is not life-threatening. But Fibromyalgia does have an impact on daily life. With proper treatment, people with Fibromyalgia can see symptoms improve. ³

Myth 6: It is not possible to have a good quality of life with Fibromyalgia.

People with Fibromyalgia can live full, happy lives. There are tips they can follow to feel better. There are treatments available to help manage the symptoms of Fibromyalgia. The understanding of fibromyalgia among the public, scientists and healthcare providers is getting better each day. More and more research is being conducted. New treatments are in development. The future is bright!