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1. Introduction

Our Friends support group/message board provides continual updated information regarding Fibromyalgia, Chronic Fatigue Syndrome, chronic pain and similiar diseases, including information that might be controversial. We want to address as many relevant issues as possible. Also we like to provide a little more than an ordinary Fibromyalgia website. We are very aware of the two diseases FMS and CFS having a lot in common and that other diseases sometimes are mistaken for Fibromyalgia.

Down below you will find a basic summary of Fibromyalgia and Chronic Fatigue Syndrome. If you have any questions or need help, join us at the message board in the forum called Coping and healthproblems. Also visit our board to get information about the latest treatment for Fibromyalgia, CFS and chronic pain, including backpain. You are welcome to visit our link library. The support group has a very experienced, active and caring group of people.

2. Basics on Fibromyalgia

Fibromyalgia (FMS) is the most common cause of chronic widespread pain, affecting an estimated 2 percent of the population - or 5.6 million people - in the U.S.A., alone.

Fibromyalgia, formerly known as fibrositis, was first recognized by the American Medical Association as a "true" illness and the cause of disability in 1987. In an article the same year, in the Journal of the American Medical Association, a physician named Goldenberg called the syndrome Fibromyalgia. Even though Goldenberg's paper was published in a highly respected medical journal, some doctors are still slow to accept FMS as a real diagnosis. Doctors' reluctance is largely due to the lack of "clinical" evidence. In other words, there isn't an X-ray or blood test to prove FMS.

Fibromyalgia has also been called a "wastebasket" diagnosis, usually meaning that the doctor doesn't acknowledge real pathology or consistent disease. Some doctors and medical researches don't believe that people "just have" Fibromyalgia. They suspect that other diseases like for instance Lyme disease or spine problems are undiagnosed and mistaken for Fibromyalgia or other syndromes like Myofascial syndrome. They suspect multiple diseases might be captured with the label Fibromyalgia. Also some believe every case of Fibromyalgia has a cause, like whiplash, Arnold Chiari or cervical stenosis, Lyme disease, mycoplasma or viral infections, chronic Epstein Barr mono, lupus or rheumatoid arthritis. Join our ongoing discussions in our support group.

More dangerous still is that the Fibromyalgia diagnosis gives a label for insurance billing that allows doctors to now explain away huge varieties of symptoms. This has only been lately acknowledged to be very dangerous to the Fibromyalgia patient. According to a report in the British Medical Journal, Febr. 2002, FMS patients die more often from cancer probably because their doctors don't listen to them when they complain of their initial symptoms and the diagnosis is often made too late. The FMS diagnosis can be used as an excuse for doctors not to think.

Ordinary laboratory tests are unlikely to show anything unusual, and the diagnosis is usually made from the history and physical exam. Upon physical examination, the Fibromyalgia patient will be sensitive to pressure in certain areas of the body called tender points. To meet the traditional diagnostic criteria, patients must have:

A. Widespread pain in all four quadrants of their body for a minimum of three months

B. At least 11 of the 18 specified tender points

These 18 sites used for diagnosis cluster around the neck, shoulder, chest, hip, knee and elbow regions. Over 75 other tender points have been found to exist, but are not used for diagnostic purposes.

Although the criteria focuses on tender point count, a consensus of 35 Fibromyalgia experts published a report in 1996 saying that a person does not need to have the required 11 tender points to be diagnosed and treated for FMS. This criteria was created for research purposes and many people may still have Fibromyalgia with less than 11 of the required tender points as long as they have widespread pain and many of the common symptoms associated with Fibromyalgia.

3. Basics on Chronic Fatigue Syndrome (CFS)

Millions of people from around the world are afflicted with Chronic Fatigue Syndrome. An illness that is little understood, and baffles medical science. It's main characteristic is a relentless and extreme fatigue unrelieved by sleep and often made worse by even minor activity. Sometimes brought on by a viral flu that just doesn't go away. Some people experience remissions and others have an ongoing battle with fatigue and pain, including auto-immune type symptoms, frequently being diagnosed with arthritis as the cause of the pain. There are documented clusters of epidemics of CFS over the course of the last 50 years.

Chronic Fatigue Syndrome is usually accompanied by a group of other symptoms which include muscle and joint ache, headache, memory loss and mental confusion, poor concentration and depression, anxiety attacks, dizziness, irregular heart beat, digestive disorders, recurring infections, low grade fever, swollen lymph glands, allergies, rashes, hypersensitivity to heat and cold, light and sound. Although there are no standard medical tests to detect CFS, the Center for Disease Control suggests that if these symptoms persist for a period of six months, it is a strong indication that an individual has the condition. As overwhelming as this illness may be, diet and suppliments are recommended but not a cure. There are numerous treatments that are controversial and unproven. Some patients experience remissions, while others might find their illness progressive. Join our discussion forum called Coping with Health problems.

A. Fatigue
Severe, unexplained fatigue that is not relieved by rest, which can cause disability and which has an identifiable onset (i.e., not lifelong fatigue). It must be persistent or relapsing fatigue that lasts for at least six or more consecutive months.

B. Four or more of the following symptoms:

impaired memory or concentration problems
tender cervical or axillary lymph nodes in neck region (note that they do not have to be swollen but just tender; this can be a problem for people with FMS who have tenderness in these areas as well)
sore throat (but may not show signs of infection)
muscle pain
multi-joint pain (but not arthritis)
new onset headaches (tension-type or migraine)
unrefreshing sleep (wake up in the morning feeling unrested)
post-exertional malaise (fatigue, pain and flu-like symptoms after exercise)

Five of the above eight criteria relate to pain and are often present in Fibromyalgia as well. For both the Fibromyalgia and Chronic Fatigue Syndrome criteria, patients should be evaluated for other problems that could cause pain and fatigue, such as low thyroid function, low iron stores, arthritis and many other medical conditions. If any of these problems are found and corrected, but the individual still meets the FMS criteria, these other disorders (FMS and CFS) are viewed as co-existing and deserving of special medical attention.

4. Chronic Fatigue Syndrome or Fibromyalgia - similar illnesses?

Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) and Fibromyalgia Syndrome (FMS), have rather nonspecific but similar complex, multi-organ signs and symptoms that overlap or are almost identical. The major difference between these illnesses appears to be in the severity of specific signs and symptoms. ME being the diagnostic term used in Europe.

The diagnosis might be influenced purely by the particular information your doctor has recieved, such as if your illness did not start with a flu, then they might decide you have FMS. Fatigue and pain are a specific charcteristic of all three illnesses, so the accuracy of diagnosis can be flawed. Many credible sources think both CFS, ME and FMS are the same illness, but others disagree.

5. Infectious nature?

There is growing awareness that many chronic illnesses may have an infectious nature that is either responsible (causative) for the illness, a cofactor for the illness or appears as an opportunistic infection(s) that is responsible for aggravating ones disease. There are several reasons for this awareness, including the clustered appearance of an illness, often in immediate family members and close friends or fellow workers, the course of the illness and its response to therapies based on infectious agents.

5.1 Mycoplasma

One of the types of infections that have caught the attention are microorganisms called Mycoplasmas, small bacterial organisms, lacking cell walls, that are capable of invading several types of human cells and are associated with a wide variety of human diseases. Dr. Garth Nicolson has performed much research on this subject, and has some excellent information regarding the high percentages of CFS - FMS related bacterial infections.

5.2 Laboratory results

Three separate laboratories in the United States have identified Mycoplasma organisms in patients with Chronic Fatigue Syndrome and Fibromyalgia. With percentage of positives ranging from 60-80%.

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia Syndrome (FMS), Multiple Chemical Sensitivity (MCS), and Gulf War Syndrome (GWS) share many of the same symptoms, and often occur together, but they differ greatly in the methods used for their diagnosis and treatment. Which of these diagnoses a person receives usually depends on the type of specialist he or she sees. Chronic Fatigue Syndrome is most likely to be diagnosed by internists or infectious disease specialists and Fibromyalgia by rheumatologists.

5.3 Research

Research on Chronic Fatigue Syndrome (CFS), recently presented by Dr. Martin Lerner, has received considerable media attention. Lerner, an infectious disease specialist and clinical professor at Wayne State University School of Medicine in Detroit, believes that the cause of CFS is a continuing or reactivated cardiac infection by Epstein-Barr virus (EBV) and cytomegalovirus (CMV).

Data from two new studies by Lerner, showed that 95% of CFS patients tested by holter monitoring had abnormal electrocardiograms (ECGs), including oscillating or flat/inverted T waves. Approximately 25% of healthy subjects had abnormal ECGs. Right ventricular endomyocardial biopsies performed on the CFS patients showed microfiber disarray, hypertrophy and mild fibrosis.

Older observations from Europe suggested that an illness called myalgic encephalomyelitis had occurred in clusters that suggested an infectious/contagious basis for the outbreak.

There is some evidence, however, that CFIDS may be associated with unresolved or persistent infectious agents. For example, most patients with CFIDS have persistently and, at times, markedly elevated antibodies to portions of the EBV, suggesting that their latent infection with EBV has in some way been re-activated. This indicates that they have been exposed to EBV at least once and possibly on an ongoing basis. The same can be said, albeit less assuredly, for HHV-6. Belgian and French coworkers also have reported recently that certain types of bacteria known as Mycoplasma are associated with precipitating or perpetuating the illness. One species of special interest is Mycoplasma fermentans. Weighing the evidence,very few infectious diseases cause the number and diversity of symptoms seen in patients with CFIDS. The disease that most resembles CFIDS is acute and subacute EBV infection.

Other case histories have shown numerous bacterial infections causing CFS and FMS symptoms. Also, research is ongoing, including endocrine/hormone disorders and auto-immune disease.

Here is a reply from Kit to a member asking about the difference between Fibromyalgia and Chronic Fatigue Syndrome:

Quote:

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Your question about FMS and CFS. Look at the diagnostic criteria:

Diagnostic criteria for CFS
A. Fatigue

Severe, unexplained fatigue that is not relieved by rest, which can cause disability and which has an identifiable onset (i.e., not lifelong fatigue). It must be persistent or relapsing fatigue that lasts for at least six or more consecutive months.

B. Four or more of the following symptoms:

impaired memory or concentration problems
tender cervical or axillary lymph nodes in neck region (note that they do not have to be swollen but just tender; this can be a problem for people with FMS who have tenderness in these areas as well)
sore throat (but may not show signs of infection)
muscle pain
multi-joint pain (but not arthritis)
new onset headaches (tension-type or migraine)
unrefreshing sleep (wake up in the morning feeling unrested)
post-exertional malaise (fatigue, pain and flu-like symptoms after exercise)

Diagnostic criteria of FMS used to focus on 11 of 18 tenderpoints. In 1996 the American assoication of rheumatology decided that a person could still have FMS without 11 or 18 tender points provided they had a syndrome characterized by:
fatigue
irritable bowel (e.g., diarrhea, constipation, etc.)
sleep disorder (or sleep that is unrefreshing)
chronic headaches (tension-type or migraines)
jaw pain (including TMJ dysfunction)
cognitive or memory impairment
post-exertional malaise and muscle pain
morning stiffness (waking up stiff and achy)
menstrual cramping
numbness and tingling sensations
dizziness or lightheadedness
skin and chemical sensitivities

Look at the incredible overlap-a large number of people meeting one set of criteria also meet another. Whichever one their doc thought of first was likely related to what they complained about the most. Whether the doc completed all the questions about both relates to how thorough the doc is, how knowledgeable, and how much time the doc had available. Many things that cause one of those illnesses will cause the other. I had both diagnoses on my chart before the underlying cause was discovered-Lyme Disease.

Lyme happens to cause all the symptoms you have listed (not spina bifida occulta, obviously). Most doctors do not know how to diagnose it, and the tests they do are a deadly trap. If you are going to pursue this, please do not talk to your docs without talking to me further first. The chances are over 90% yu will get the wrong test, and then they will never do the right test based on the data in the wrong test.

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