ME/CFS & Fibromyalgia Basics

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By Bruce Campbell

With long-term illness like ME/CFS and fibromyalgia, you have a different role as a patient than you have with acute illnesses. With short-term illnesses, you often can rely on a doctor to provide a solution. But ME/CFS and fibromyalgia are different. There is no medical cure for either one.

Conditions that can't be cured need to be managed. A manager is someone who is responsible for making decisions. And you are the expert on your condition. You know your situation better than anyone else and you are the person who has to carry out the treatments that can help you.

So, you are the most important person in managing your ME/CFS or fibromyalgia.

As a self-manager, you have a number of tasks. One is to gather information, to learn as much as you can about your condition and treatment options for it, so that you can make informed, intelligent decisions. A second task is to seek help from appropriate professionals.

Since the relationships you develop with doctors and other health care providers are crucial, it is important to find people you trust and feel comfortable working with, and for you to take an active role in your care.

Third, your success depends on your taking an active role in responding to ever-changing conditions. Above all, this means learning to solve problems. Each of these three tasks will be described in this series. We begin with a discussion of basic facts about ME/CFS and fibromyalgia.

Basic Facts about ME/CFS

ME/CFS, also called Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and formerly Chronic Fatigue and Immune Disfunction Syndrome (CFIDS), is a long-term disorder in which debilitating fatigue is usually the most prominent symptom. Fatigue is experienced as a deep exhaustion that can be brought on by low levels of activity or for no apparent reason.

Other common symptoms include poor sleep, body pain and mental confusion ("brain fog"). Sleep is often experienced as unrefreshing. Patients often feel as tired when they get up as before going to bed. Body pain is often described as the feeling of being run over by a truck. Emotional problems such as depression, anxiety, irritability and grief, are common.

The severity of ME/CFS varies greatly. While many patients have moderate cases, some continue to lead relatively normal lives and others are housebound or even bedridden.

ME/CFS is a common illness. Research suggests that there are probably something like one million people with the condition in the United States, and comparable numbers elsewhere. The illness affects all racial and economic groups, striking more vulnerable populations more heavily than upper middle class whites. About two-thirds of patients are women.

ME/CFS often appears together with fibromyalgia. Something like two-thirds of people diagnosed with one illness also have the other. The two illnesses are alike in many ways. Their symptoms are very similar and both are hidden illnesses, meaning patients often appear normal to others. There is no physical marker for either illness. Although both are now widely acknowledged to be real, physical illnesses, neither has a known cause or cure.

Diagnosis

There is as yet no diagnostic test or proven physical marker for CFS. Rather, the illness is diagnosed through a thorough medical examination and laboratory tests. The exam and tests can be used to identify other illnesses that have fatigue as a central symptom. These may include thyroid problems, lupus, MS, hepatitis, sleep disorders and depression.

For several decades, if no other illness could explain symptoms, an illness was considered to be ME/CFS if two criteria were met.

First, the person experienced a debilitating fatigue lasting at least several months and forcing a substantial reduction of activity.

Second, she or he had four or more of the following eight symptoms: 1) impaired memory or concentration (mental confusion), 2) sore throat, 3) tender lymph nodes in the neck or armpit, 4) muscle pain, 5) joint pain, 6) headaches of a new or different type, 7) sleep that does not refresh and 8) extreme fatigue following activity.

Since the 2015 Institute of Medicine report, there has been a shift to using the criteria outline in the report which include a substantial reduction in activity, substantial increase in symptoms after activity (post-exertional malaise) and unrefreshing sleep, and either or both of cognitive impairment and orthostatic intolerance.

Prognosis

There is so far no cure for ME/CFS and its course varies greatly. Some patients, probably only a small percentage, recover. They are able to resume their pre-illness lives with only a minor residue from the illness, such as vulnerability to high levels of stress or less physical stamina. Another, larger group achieves notable improvement but less than full recovery.

The amount of improvement in this second group ranges widely. The total of these two groups might be something like half or perhaps somewhat more than half of all patients. Unfortunately, others remain quite ill while a few worsen over time, and others swing between periods of improvement and times of intense symptoms.

The course of CFS also varies. Some people with the condition make relatively steady progress, some swing between periods of improvement and times of intense symptoms, while still others have a relatively stable level of symptoms, neither improving nor declining.

Treatments

Given the absence of a cure, treatment for ME/CFS focuses on controlling symptoms and improving quality of life. Medical treatment is tailored to the individual patient, often focusing on addressing the most bothersome symptoms such as sleep disorders and pain. Since no medication is commonly helpful, there is often a period of experimentation to find what works for a given individual.

Medications may have to be changed periodically, as they can lose effectiveness. Patients are usually started with very low dosages. Non-medical approaches are often used as well. They may include vitamins and supplements, acupuncture and other non-traditional remedies.

Many ME/CFS authorities recommend the approach we present in our program: making use of medical treatments where appropriate, but focusing on lifestyle adjustments such as pacing, control of stress and good support.

Dr. Charles Lapp summarizes the power of this approach when he states "There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of ME/CFS or FM."

Other well-known clinicians like Dr. David Bell and Dr. Paul Cheney echo that sentiment. After stating his belief that "the most important treatments available at the present time are not related to drugs," Dr. Bell recommends accepting and learning to live within limits, reducing stress, getting good rest and, where appropriate, exercise.

Dr. Cheney has said that patients need to work at "lifestyle adjustment, setting activity limits, [and] changing attitudes and beliefs." He advises patients "find the boundaries of what they can do...and then stay within those boundaries."

Basic Facts about Fibromyalgia

Fibromyalgia, also known as fibromyalgia syndrome (FMS), is a common condition in which pain is usually the major symptom. The pain is generally felt all over the body, though it can start in one region and spread or move from one area to another. The disease does not damage tissue and is not progressive.

Probably the second-most common symptom is poor sleep. Patients may have trouble falling asleep or staying asleep. In most cases, sleep is not experienced as restorative or refreshing.

Another frequent symptom, reported by about three-quarters of patients, is fatigue of the type felt by people with ME/CFS.

Other common symptoms among fibromyalgia patients include headaches, strong emotions such as depression and anxiety, and cognitive difficulties ("fibro fog"). The latter include confusion, difficulty concentrating and poor memory. People with fibromyalgia often have one or more other medical conditions, including ME/CFS, irritable bowel syndrome, thyroid problems, arthritis and myofascial pain.

As with ME/CFS, the severity of fibromyalgia varies. Many patients continue to work, though a significant minority are disabled. Like ME/CFS, fibromyalgia is a common illness. Estimates vary, but there are probably at least four to five million people in the United States with fibromyalgia, possibly many more. Perhaps as many as 90% are women.

Diagnosis

Like ME/CFS, fibromyalgia is diagnosed through identification of symptoms and exclusion of other possible causes. There is no diagnostic marker for the illness in a patient's blood or evidence of the illness that appears through X-rays or other testing.

The criteria for diagnosis include a history of at least several months of pain in many parts of the body (left and right sides, above and below the waist) and pain in at least 11 of 18 specific "tender points" on the body. Tender points are locations on the body that are painful when pressed.

Such points in fibromyalgia are found in particular locations around the neck, shoulders, chest, elbows, lower back, hips and knees. Studies suggest that it takes an average of five years after the first appearance of symptoms to get a diagnosis.

Prognosis

Fibromyalgia is neither progressive nor fatal. Just as there is no cure for ME/CFS, there is no treatment that cures fibromyalgia. But, as with ME/CFS, some patients experience a spontaneous recovery and many experience notable improvement.

In fact improvement is probably the most common outcome for fibromyalgia, experienced by half to two-thirds of patients. As with ME/CFS, the course of fibromyalgia may vary. The location and severity of pain can change over time. Symptoms can be intermittent, fluctuating or persistent. Triggers of symptom intensification may include stress, trauma, repetitive motion, poor sleep, strong emotions and weather changes.

Treatments

Like treatment of ME/CFS, treatment for fibromyalgia focuses on controlling symptoms rather than cure. Approaches include medications, alternative treatments and self-help measures.

Medications are often used for improving sleep and controlling pain, though their effectiveness varies greatly from patient to patient. Medication regimes are usually developed through experimentation with different medications and dosages. Overall, medications are only "modestly helpful" according to Dr. Daniel Goldenberg.

Exercise is commonly recommended, both for reducing pain and stiffness and for reversing deconditioning. And the lifestyle adjustment strategies mentioned for use with ME/CFS are also appropriate for fibromyalgia patients.

In the words of Dr. Daniel Wallace: "Patients can initiate numerous changes and make adjustments that improve their sense of well-being. Simply stated, there are things patients can do without spending money or seeing a health care provider."