FOR THE NEWLY DIAGNOSED

If you were just diagnosed with Fibromyalgia (FM) and/or Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), most likely you have been battling pain and fatigue for awhile. Of the people we've surveyed, it took them an average of seven years to be diagnosed.

While it can be relieving to finally have a name for your symptoms, learning that you have a chronic condition that you will most likely have to deal with for life can be distressing. We have created this section if for you, to help you in learning to live with your FM and/or CFS/ME.

Choose from the menu below for more information. You can always Contact Us if you have any questions.

Don't let pain from Fibromyalgia (FM) and Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME), keep you down. Small changes to your daily routine can keep you active and enjoying life. Here are some tips to help you improve your quality of life with FM and/or CFS/ME.

Always Believe in Yourself

And what you are feeling both emotionally and physically. No one can tell you that what you are experiencing is not real! FM and CFS/ME are chronic medical disorders just like diabetes, hypertension, and asthma. While there are still gaps understanding these disorders, and disagreements among researchers as to specific causes, the symptoms are very real, and your suffering is legitimate.

Never Feel Guilty

FM and CFS/ME aren't something you wished for, and they aren't something you can wish away. Healthcare providers have had trouble accepting FM and CFS/ME as bona fide medical conditions because of the lack of readily available blood tests or X-rays that show there is something wrong with the FM and CFS/ME patient's body. However, research studies have revealed problems in such areas as the chemical content of the spinal fluid, the manner in which certain endocrine glands and the autonomic system respond to stress, in brain function, and in patient performance during tests of cognitive and physical function. FM and CFS/ME are not psychiatric conditions or character flaws.

FM and CFS/ME Can Wax and Wane

So on the days that are extra challenging, remember that it will get better. FM and CFS/ME involve much more than just pain. In fact, surveys of patients have consistently suggested that fatigue may be just as problematic, if not more so. Other leading symptoms that are associated with these disorders include sleep disturbances, stiffness, and problems with concentration and certain forms of memory. While many clinicians associate FM and CFS/ME with depression, it appears that anxiety-related issues may be more prominent. Appropriate therapies can help keep flares under control, and good self-management techniques can help stave them off.

You're Never Alone

FM and CFS/ME can sometimes make you feel very alone. Keep in mind that over 10 million Americans have FM and/or CFS/ME and feel just like you do! Our Support Group Database consists of 664 Support Groups in 16 countries worldwide that offer support to people with FM and/or CFS/ME. Help is just around the corner.

Get Enough Sleep!

Many of us are plagued by sleep disturbances, so it is extra important that you do everything you can to make sure that you sleep as well as possible. Go to bed at the same time each night. Develop a bedtime routine. That will help your body to know that it is time to relax. If your bed is uncomfortable, consider getting a new mattress. If a new mattress is not financially feasible, a mattress pad and new pillows might help. Make sure that your bedroom isn't too hot or too cold.

During the day when you get tired, it is important to rest. Rest can be lying down in bed with a book for half an hour or watching TV with your feet propped up. It can be doing a sitting task at work. Whenever I am tired, I do something to make myself more comfortable. That invariably leads to me having more energy for the next thing I need or want to do.

Find A Good Healthcare Provider

Some doctors are more familiar with FM and CFS/ME than others. Ideally, the relationship between a healthcare provider and a patient should be comfortable and based on mutual respect. When considering potential providers, patients should do some "homework." Do they have good reputations among professional colleagues, and do their patients speak well of them? Do they have a positive attitude toward FM and CFS/ME, do they keep up with current insights on treatment options? These are all questions you need answers to when searching for a healthcare provider. Our Doctor Database consists of 5970 doctors in 80 countries worldwide that specialize in helping people with FM and/or CFS/ME.

Try Hot Baths

Soaking in a hot bath is an excellent way to relieve stress and relax your muscles. Thirty minutes in a hot bath (or even better a hot tub) can be a great way to start the day or a relaxing part of your bedtime routine.

Use Gentle Massage

Ask you partner or a friend to rub an aching back. Aching arm or leg muscles can even be massaged by yourself. The trick is keeping the massage gentle. You don't want to trigger a pain reflex, just to signal to your muscles that it is ok to relax.

Ask For Help!

This one is perhaps the most difficult but very important. There are most likely people in your life who would be happy to help out on an occasional or regular basis. Even asking for help with little things can make a huge difference. Can your partner bring you a drink so you don't have to stand up? Can your kids make their own lunches? Is your mom willing to run some errands for you when she is going out to do her own? Asking others to help you with simple things will give you more energy for the important things.

Don't Be Afraid of Pain Relievers

Talk to you doctor about what types of pain relievers might be best for you and then when you need them, take them. I know too many people who suffer because they are afraid of their medication. If you are worried about possible side effects, talk to your doctor and pharmacist about it and change medications if necessary.

Leave Work Stress at Work

Life is hard enough without bringing home stress from a stressful job. This is especially important when you have FM and CFS/ME. Carefully consider each of the sources of stress at your place of employment and come up with a plan to improve things. Can you alternate physical and nonphysical tasks? Share sources of stress with co-workers. It will not be to your benefit to take all the worst things on yourself. If your job causes a lot of stress, see if you can cut back on hours or transfer to a different position or location. It might even be in your best interest to leave. Usually there are other options for cutting work stress, but if your job is making you sicker, it might be best to cut expenses for awhile and find less stressful employment or another way to support yourself.

Keep The Lights On!

Sunlight improves mood and reduces stress. It also helps in the production of vitamin D. Vitamin D deficiency has been linked to bone pain and muscle weakness. Try to take a leisurely walk outside each day, or if you aren't up to it, just sit in a sunny spot and relax. Obviously there are times of the year in some climates where sunshine is a rare occurrence. During those times, keep your house as bright as possible. Turn on the lights when you get up in the morning and don't dim them until it is time to start your bedtime routine. You will find your mood brighter and have fewer FM and CFS/ME symptoms.

Learn to Listen to Yourself

The thing that has helped me the most is learning to stop regularly during the day to see how my body and mind are doing and then to do what is necessary to make myself more comfortable. So many things can make bad flare days worse. Learn to ask yourself if you are hungry or thirsty or need to move or rest. Have you been on the computer too long? Do you need company? It is too easy in our busy lives to just push past our needs, but in the end, learning to listen and respond to yourself, will lead to a happier, less stressful, and less painful life.

Never Give Up Hope!

Every day we are making advances in the awareness, research and treatment of FM and CFS/ME. People, organizations, companies, and medical experts are all working to ensure a better future for people with these medical conditions! There is hope. In the last 15 years, medical science has made tremendous strides in our understanding of the basic pathology of these disorders, and advances are rapidly being made in the manner in which they are being treated.

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If you have just been diagnosed with fibromyalgia syndrome, than you are probably wondering exactly what to expect in your future. What symptoms will you develop? Will the pain get worse? Will you ever completely recover? Unfortunately, there are a lot of questions when it comes to fibromyalgia, and not always the best answers.

The Course of Fibromyalgia

The course that fibromyalgia takes depends upon the individiual. Typically, fibromyalgia begins with some minor aches and pains. Gradually, pain will become more pronounced and noticeable. You'll begin to lose some muscle strength and movement, which may affect your mobility. For instance, you may find that you have trouble getting out of bed in the morning or completing your responsibilities at work. You will also begin to notice other fibromyalgia symptoms popping up.

Fibromyalgia symptoms tend to turn up in cycles. You may notice that your symptoms are fine one day and really bad the next. This is known as a fibromyalgia flare. Certain things can trigger flares, like alcohol, overexertion, and insomnia. Over time, you will learn to recognize those things that trigger your flares.

Does Fibromyalgia Get Worse?

Luckily, research shows that fibromyalgia symptoms tend to level out over time. This means that your symptoms shouldn't get any worse. However, fibromyalgia is a chronic illness, which means recovery is difficult. You may always have to live with some symptoms. If your health continues to decline or declines quickly, seek appropriate treatment. Sometimes, fibromyalgia can cause associated conditons that may affect your health.

What Fibromyalgia Is

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.

I 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.

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) is a complex illness characterized by severe, prolonged fatigue in addition to numerous other recurrent clinical symptoms including pharyngitis, persistent low grade fever, lymphadenopathy, myalgia, arthralgia, headache, sleep disorders, difficulty in concentrating, and short term memory loss. According to The Center for Disease Control (CDC), CFS/ME affects more than 4 million people in the United States.

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 Encephalomyelitis (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's a myth that patients with CFS/ME can be cured by exercise, but it's 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

Myth 9: CFS/ME is a psychological disorder.

While rates of mood disorder are increased many chronic fatigue syndrome (CFS/ME) patients do not have a mood disorder and mood disorders are not increased in patients prior to their coming down with their disease. ²⁴

Myth 10: CFS/ME is simply about fatigue

Not only do patients report that their fatigue is far more severe than anything they'd ever experienced before they also often experience many other troubling symptoms such as pain, poor sleep, inability to concentrate, troubles standing, problems with coordination, and more.²⁴ For more information about CFS/ME symptoms click here.

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!

Myth 7: Fibromyalgia is just pain.

Fibromyalgia patients often display a variety of other symptoms such as severe fatigue, sleep and cognitive problems, allergies, chest pain, dry eyes and mouth, orthostatic intolerance (trouble standing), anxiety and depression. For more information about additional syptoms click here.

Myth 8: Fibromyalgia is primarily a muscle disease.

The locus of pain in the muscles has lead FM to be wrongly characterized as a muscle disease. Studies, however, have found few indications of inflammation or injury in the muscles of FM patients. Most researchers now believe the pain and other problems found in FM are primarily caused by a central nervous system dysfunction.

Myth 9: Fibromyalgia is a psychological disorder.

The early emphasis put on diagnosing FM patients using tender points singled out a subset of primarily female patients with high rates of depression. Later studies indicate mood disorders neither contribute to the risk of getting FM nor play a role in its severity.

Myth 10: Fibromyalgia is a minor disease.

Disability is an unfortunate but common outcome of FM. One study found that 25% of FM patients had received disability payments at one time.