FM/CFS/ME RESOURCES - Miscellaneous FAQ's

 

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MISCELLANEOUS FAQ'S

The following are miscellaneous questions and answers regarding Fibromyalgia (FM) and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Contact us if you have a question you'd like answered. Select from the table below for more FAQ's.

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Why Can't I Remember Anything?

This is commonly known as "Brain Fog" or "Fibro Fog". It's usually one of the earliest symptoms that make us realize that something is really wrong with us. We erroneously think we have early Alzheimer's, brain tumors, or that we're just crazy.

Brain fog may be described as a state of confusion or lack of clarity. It can feel like a cloud that reduces your visibility or clarity of mind. It can cause you to become forgetful, detached and often discouraged and depressed.

Brain fog and/or fibro-fog is very common. It affects thousands of people, children as well as adults. It contributes to school and work problems, low self-esteem, accidents, unhappy relationships and even crime and delinquency. Although it is common, it is not a recognized diagnosis, either in medicine or psychology. Some people have been this way for most of their life and think this is normal. Brain fog can have many causes - physical, biochemical, and emotional.

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Can I Donate Blood?

This is what the American Red Cross says about donating blood if you have a chronic illness:

    "Most chronic illnesses are acceptable as long as you feel well, the condition is under good control, you have an adequate hemoglobin level and your temperature is normal when you come to donate, and you meet all other eligibility requirements."


For People With CFS/ME:

    "You may not donate if you have been diagnosed by your doctor with chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME). This requirement is related to concerns about the impact of donation on donor health and the possibility of infectious disease transmission.

    Xenotropic Murine Leukemia Virus-Related Virus (XMRV) infection has been associated in some studies with CFS. There is currently insufficient data to conclude that XMRV is transmitted through blood transfusion. However, the National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop CFS."

    Eligibility Criteria by Alphabetical Listing

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Can I Be An Organ Donor?

This is what the American Red Cross says about donating blood if you have a chronic illness:

    "Most chronic illnesses are acceptable as long as you feel well, the condition is under good control, you have an adequate hemoglobin level and your temperature is normal when you come to donate, and you meet all other eligibility requirements."


For People With CFS/ME:

    "You may not donate if you have been diagnosed by your doctor with chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME). This requirement is related to concerns about the impact of donation on donor health and the possibility of infectious disease transmission.

    Xenotropic Murine Leukemia Virus-Related Virus (XMRV) infection has been associated in some studies with CFS. There is currently insufficient data to conclude that XMRV is transmitted through blood transfusion. However, the National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop CFS."

    Eligibility Criteria by Alphabetical Listing

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Why Do I Keep Gaining Weight?

There are a several answers to that question. First, and most obviously, increased pain and discomfort makes us avoid those activities we previously enjoyed and which helped to keep the weight off. Secondly, our metabolism is slowing as we age. Thirdly, and perhaps the most important answer, lies in understanding the role that some of our biochemical abnormalities.

FM often causes weight gain in individuals due to a number of factors that are both directly and indirectly related to the disease itself. FM leads to hormonal imbalances, affecting levels of cortisol, thyroid, serotonin and insulin, as well as the production of growth hormones. Because of this hormonal imbalance, metabolism slows down and weight gain often follows. Fatigue associated with FM also leads to increased weight.

Because FM initiates an arousal disturbance in the brain wave pattern during sleep, the individual can't get enough quality sleep; the individual can also suffer from sleep apnea and restless leg syndrome, which increase tiredness. A new study found that a lack of sleep also leads to higher hypocretin production, which is important in sleep and appetite levels. When hypocretin neuron levels are high (due to environmental and mental stressors), they lead to an increased state of arousal, leading not only to fatigue, but also to overeating. Drugs taken to treat FM-related depression can also cause the individual to gain weight. Antidepressants increase appetite, fluid retention, and can affect hormone levels and therefore metabolism.

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Why Do My Nails Have Ridges?

Your fingernails' health can tell a great deal about your internal health. These abnormalities of the nails are often the result of nutritional deficiencies or other underlying conditions. Here are some of the nutritional deficiencies and what they do:

  • Hangnails: Lack of protein, folic acid, and Vitamin C
  • Brittleness and dryness: Vitamin A and calcium
  • Horizontal, vertical ridges, and fragility: B vitamins
  • Excessive dryness, rounded and very curved nail ends, darkened nails: B12
  • "Spoon" shaped nails and/or vertical ridges: Iron deficiency
  • White spots: Zinc deficiency
  • Splitting nails: Lack of hydrochloric acid

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Is this Disease Hereditary?

As we become more familiar with the signs and symptoms of this disease, we often begin seeing that other family members seem to have it, too. Does that means it's hereditary? Some doctors say that there does seem to be a predisposition for that. If that is true, then does that mean there is a gene for this disease being passed down within the family? No one knows yet because no research is being done on it. There are certainly "clusters" of family members with this disease. However, there are also clusters in non-related people who happened to live in the same community or worked in the same place.

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How Many People Get FM/CFS/ME?

Current best estimates indicate that:

  • 2% to 4%, or 4 to 8 million Americans have FM/CFS/ME
  • 1.5 million people in Canada have FM/CFS/ME
  • In Europe it's estimated that 1 million people have FM/CFS/ME

These figures make FM/CFS/ME the second most common rheumatological illness after osteoarthritis.

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What Is Homeopathy?

Your body has the ability to heal itself. When you are ill, your body produces symptoms, which is how we know that the body has recognized that something is wrong and is actively working to heal itself. This "natural regulator" is your body's auto-regulatory mechanism and it works to keep your body in balance - or in a state of homeostasis.

Here's an example of how this works. Think of your "natural regulator" as your internal temperature gauge. If you go outside and it is very hot, your body will recognize it is too hot and begin to perspire. Your homeostatic mechanism is producing a symptom - perspiration - in an effort to cool down the body. If you go outside and it is very cold, the symptom is shivering. Your homeostatic mechanism is trying to warm the body up by shivering to produce heat.

Think about the last time you were shivering. You could not control it, and you did not stop until you were warm. It is the same way with homeopathic medicines. If you are ill and your body is showing symptoms, the symptoms will not disappear until the source of the symptoms has disappeared.

Homeopathic medicines stimulate your body's homeostatic mechanism so your body heals itself by dealing with the sources of your symptoms.

Homeopathy is different from conventional medicine because conventional medicine simply defines health as the lack of symptoms (if you dry up a runny nose, is your cold gone and are you healthy?). Homeopathy defines health as the lack of disease (if you get rid of the source of the runny nose in the process of dealing with the source, the runny nose will disappear on its own.)

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Is Homeopathy Regulated?

Homeopathic medicines are regulated as drugs by inclusion in the Food, Drug and Cosmetic Act. All homeopathic medicines are required to have NDC (National Drug Codes) listed on the front panel of the label and box and identify that the products are registered with the federal government. Homeopathic medicines, like all drugs in the United States, are also regulated as prescription and non-prescription. If a remedy is regulated as a prescription item, it is necessary to have a written prescription from a physician to obtain the remedy.

Drugs in the United States are made according to either the United States Pharmacopoeia (USP) or the Homeopathic Pharmacopoeia of the United States (HPUS). These Pharmacopoeias are like cookbooks that contain the procedures for manufacturing drugs in the United States-, either prescription or non-prescription. You can find most common drugs in the USP and every homeopathic medicine from Arnica to Zincum in the HPUS.

Because homeopathic medicines are regulated as drugs, in order to prescribe or dispense homeopathic medicines, you must have a license to prescribe medicine. If somebody makes an individual decision to use a homeopathic over-the-counter drug for an acute illness, that is their decision. It is illegal to tell somebody which remedy to take unless you have a license to prescribe. It is not illegal, however, to guide people towards books and informational materials that will help them determine which remedy may best match their symptom picture.

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What Is Naturopathic Medicine?

Naturopathic medicine (also known as naturopathy) is a school of medical philosophy and practice that seeks to improve health and treat disease chiefly by assisting the body's innate capacity to recover from illness and injury. Naturopathic practice may include a broad array of different modalities, including manual therapy, hydrotherapy, herbalism, acupuncture, counseling, environmental medicine, aroma therapy, nutritional counseling, homeopathy, and so on. Practitioners tend to emphasize a holistic approach to patient care. Naturopathy has its origins in the United States, but is today practiced in many countries around the world in one form or another, where it is subject to different standards of regulation and levels of acceptance.

Naturopathic practitioners prefer not to use invasive surgery, or most synthetic drugs, preferring "natural" remedies, i.e. relatively unprocessed or whole medications, such as herbs and foods. Licensed physicians from accredited schools are trained to use diagnostic tests such as imaging and blood tests before deciding upon the full course of treatment. Naturopathic Practitioners also employ the use of prescription medications and surgery when necessary and refer out to other medical practitioners.

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What Is Acupuncture?

Acupuncture is a technique of inserting and manipulating filiform needles into "acupuncture points" on the body. According to acupuncture teachings this will restore health and well-being, and is particularly good at treating pain. The definition and characterization of these points is standardized by the World Health Organization (WHO). Acupuncture is thought to have originated in China and is most commonly associated with Traditional Chinese medicine. Different types of acupuncture (Japanese, Korean, and classical Chinese acupuncture) are practiced and taught throughout the world.

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What Is Acupressure?

Acupressure is a traditional Chinese medicine technique based on the same ideas as acupuncture. Acupressure involves placing physical pressure by hand, elbow, or with the aid of various devices on different acupuncture points on the surface of the body. Traditional Chinese Medicine does not usually operate within a scientific paradigm but some practitioners make efforts to bring practices into an evidence-based medicine framework.

There is no scientific consensus over whether or not evidence supports the efficacy of acupressure beyond a placebo. Reviews of existing clinical trials have been conducted by the Cochrane Collaboration and Bandolier according to the protocols of evidence-based medicine; for most conditions they have concluded a lack of effectiveness or lack of well-conducted clinical trials.

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What Is Hydrotherapy?

Hydrotherapy, formerly called hydropathy, is probably the oldest form of medical treatment. It involves the use of water for soothing pains and treating diseases. Hydrotherapy is used to treat arthritis, burns, spasticity, ankylosing spondylitis, musculoskeletal disorders, spinal cord injuries and stroke patients with paralysis. It is also used to treat orthopedic and neurological conditions in dogs and horses and to improve fitness.

Immersion in water - and doing exercises in water - has always been a popular therapy. Thousands of years of treatments have built an enormous amount of expertise but the alleged benefits had little supporting evidence from science until approximately 30 years ago. A 2006 survey of research in Annals of the Rheumatic Diseases discusses the vast amount of high-quality studies showing the effectiveness of hydrotherapy. A new field of research focuses on the cost-effectiveness of hydrotherapy vs. other forms of treatment.

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Fibromyalgia & Guaifenesin Therapy

Dr. R. Paul St. Amand believes that Fibromyalgia (FM) is caused by an abnormality in phosphate excretion, which may be due to a genetic defect. Retention of phosphates eventually interferes with energy formation in affected cells.

Guaifenesin (guai) treatment flushes metabolic debris out of the body, and while this occurs, your pain will probably increase temporarily. His treatment is designed to restore energy production by releasing the body from a biochemical blockade. He believes that FM is caused by the retention of a biochemical substance within the cells themselves a metabolic malfunction that results in an inability to produce energy.

There was a research study conducted to look at the potential effect of guaifenesin in people with fibromyalgia. However, the study was never published in a peer-review medical journal (so it is not on PubMed). The study showed that guaifenesin performed no better than a placebo, and the blood/urine tests revealed that it could not possibly work as suggested by Paul St. Amand, M.D., the guaifenesin controversy is still alive.

Despite St. Amand's role as advisor for the study design (he selected the doses, etc.), he has since published a book on how guaifenesin can "cure" people with fibromyalgia. There is also a new cosmetic line that does not contain salicylates (vigorously marketed to people trying the quaifenesin protocol as outlined in St. Amand's book). It is just one example of how marketing "cures" for FM without a shred of evidence can add to the wealth of some. The promise of a "cure" sells books, but it also tarnishes the reputation of people with this chronic illness and damages their relationships. With so many bogus cures in the media, patients have a difficult time explaining to family and friends why it is that they are not going to pay for this or that to "cure" themselves!

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What's The Difference Between Acute & Chronic Illness?

An Acute illness typically will "run its course" regardless of whether or not there is drug intervention. Coughs, colds, teething, PMS, sleeplessness are all examples of such illnesses. Usually, medicines for acute illnesses are regulated as OTC (over-the-counter) drugs.

A Chronic illness is one that requires medical supervision and is often a disease that has formed over a long period of time. Examples of chronic illnesses are Cancer, AIDS, Kidney Disease, Diabetes, Fibromyalgia, Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Usually, medicines for chronic illnesses are regulated as prescription Only.

Homeopathy is often used for treatment of both acute and chronic illnesses. As with any disease, if a chronic illness is being treated using homeopathy, medical diagnosis and monitoring is still required.

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What's The Difference Between A Sign and A Symptom

A sign is objective evidence of disease; it is something that can be seen.

A symptom is subjective evidence of disease; it is a feeling.

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What's The Difference Between A Disease and A Syndrome

A disease is a pathological condition of a body part, an organ, or a system resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.

A syndrome is a group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition.

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What's The Difference Between FM and CFS/ME

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and Fibromyalgia (FM) are alike in many ways. In fact, it is not uncommon for a person to have both FM and CFS/ME. Some experts believe that FM and CFS/ME are in fact the same disorder, but expressed in slightly different ways. Both CFS/ME and FM have pain and fatigue as symptoms.

CFS/ME often begins after having flu-like symptoms. But people with CFS do not have the tender points that people with FM have. CFS/ME is an illness characterized by prolonged and debilitating fatigue accompanied by a number of other symptoms including:

  • Memory and Concentration Problems
  • Recurrent Sore Throats
  • Unrefreshing Sleep
  • Muscle and Joint Pain
  • Headaches

To be diagnosed with CFS/ME, a person must have:

  • Extreme fatigue for at least 6 months that cannot be explained by medical tests
  • Have 4 or more of the following symptoms:
  • Forgetting things or having a hard time focusing
  • Feeling tired even after sleeping
  • Muscle pain or aches
  • Pain or aches in joints without swelling or redness
  • Feeling discomfort or "out-of-sorts" for more than 24 hours after being active
  • Headaches of a new type, pattern, or strength
  • Tender lymph nodes in the neck or under the arm
  • Sore throat

FM is a malfunction of the central nervous system that causes disordered pain processing, and results in pain amplification. The main symptoms of FM include:

  • Widespread Pain
  • Fatigue
  • Sleep Disorders

Other symptoms that may occur include:

  • Chest Pain
  • Persistent Headaches, Migraines
  • T.M.J. (temporomandibular joint syndrome)
  • Mitral Valve Prolapse
  • I.B.S. (irritable bowel syndrome)
  • Vision Problems
  • Urinary Problems
  • Acid Reflux
  • Allergies
  • Dizziness
  • Numbness and Tingling
  • Sensitivity to cold or heat
  • Depression
  • R.L.S. (restless legs syndrome)
  • Chemical or Environmental Sensitivities
  • Impaired Balance or Coordination
  • Problems with Memory, Concentration and Cognitive Functioning

While the two illnesses have a number of similarities, they also have some distinct differences.

Similarities

  • Reduced Cerebral Blood Flow to the Cortex and Midbrain
  • HPA (hypothalamic pituitary axis) Suppression
  • Reduced Levels of Serotonin
  • Non-restorative Sleep
  • Reduced Levels of Growth Hormone
  • Evidence of a Genetic Component

Although there are many similarities, there are also significant differences.

Differences
  • FM is identified by 18 distinct tender points (designated points on the body that are painful when pressure is applied), while CFS/ME is distinguished by post-exertional malaise (deep fatigue and exhaustion following physical exertion, which lasts more than 24 hours).

  • Substance P (a neurotransmitter that sends pain signals) is elevated in FM but not in CFS/ME

  • RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS/ME but not in FM

  • CFS/ME is often triggered by an infectious or flu-like illness, while FM is usually triggered by a severe physical or emotional trauma (for example, injury, illness, surgery, prolonged stress)
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