CFS/FMS Frequently Asked Questions

It's All In Your Head	Anti-depressants
Benzodiazepines	Brainfog
Burning/Sore Tongue	Cause
CFS, FMS, or MCS?	Contagious
Diet	Exercise
Finger Nails	Gaining Weight
Hair Loss	Hereditary
Hormones	HPA Axis - huh?
Muscle Relaxants	Narcotics
Progressive?	Rashes
Sexual, Physical, Emotional Abuse	Sleep
Stress	Symptoms
Temperature	Viruses

Unfortunately, they're wrong. While acknowledging that it is important to keep as active as possible (so you don't become immobile), CFS/FMS actually is a disorder of the Hypothalamus-Pituitary-Adrenal (HPA) axis of the brain and we have documented low blood levels of many important amino acids, as well as elevations of other factors that make us feel more pain. Additionally, our muscles don't function as they do for normal folks. For a full explanation of the blood and cerebral spinal fluid abnormalities, click on the Abnormalities Page.

Long ago, in treating depressed patients, it was found that often their body aches and pains were relieved after starting anti-depressants. So those anti-depressants were tried on folks with CFS/FMS and they were found to work fairly well in smaller doses. Initially, a tricyclic that prevents serotonin and Norepinephrine reuptake, amitriptyline (Elavil) was used. One of the theories behind using these drugs is that they are making more serotonin (which metabolizes to nortriptyline) available for use by the brain. Many folks feel that the tricyclics simply work because of their sedative qualities and because they don't interfere with Stage 4 sleep. Additionally, in many studies, anti-depressants (including SSRI's like Prozac) have been found to be no more effective than placebo for treating the other symptoms of these syndromes.

He/She's actually doing you a favor. Most sleeping pills are central nervous system depressants, cause depression by themselves, and are addictive, but more importantly, they rob Stage 4 (delta) sleep by prolonging Stage 1 sleep. Stage 4 sleep is when the brain repairs the body. Benadryl, Valerian Root, and the tricyclic anti-depressants help people get to sleep without disrupting Stage 4.

This is just a short list of the many ways brainfog impacts us. It often is 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 are just crazy. Instead, the reason for our brainfog is because we have documented reduced blood flow in the brain areas that handle those kind of problems. For more information on brainfog. Please see Brainfog. Some people have greatly lessened their brainfog with Gingko Biloba and/or Co-enzyme Q10.

There is a medical reference to such conditions as being secondary to low estrogen. However, I don't think that study is referring to the same condition often voiced by FMS and CFS patients. Most anecdotal accounts on the various lists point to the tongue problems being caused by systemic herpes, nutritional inadequacies (particularly the B vitamins), systemic Candidiasis, or any combination of those. Bringing these problems under control often makes the burning tongue condition non-existent.

The cause(s) of Fibromyalgia and CFS remains in contention. However, it has been proven that we do not have psychiatric abnormalities as its cause. Chronic Epstein-Barr was the original name given to what is now known as Chronic Fatigue and Immune Dysfunction Syndrome, a.k.a. CFS, a.k.a. M.E. Epstein-Barr is exceedingly common in the population - almost everyone has been exposed to it. However, it apparently becomes a problem for us when it has been re-activated. There are lots of doctors who dismiss Epstein-Barr's importance in CFS and FMS, but there are lots of others who believe that Epstein-Barr, Cytomegalovirus (another common virus), Herpes Simplex, and/or HHV6 play major roles in CFS. Studies have shown that our immune systems are busy fighting a bacterial and/or virus infection, and many people have very high titers of EBV, CMV, HSV, and HHV6 (among others) during flares. Some people do not get colds and flu anymore. That is because their immune systems are so upregulated, normal colds and flu no longer effect them.

Dr. Garth Nicolson has found a large percentage of Gulf War Illness patients meet the criteria for CFS and/or FMS. His work has led to the Veteran's Administration finally recognizing CFS, FMS, and Multiple Chemical Sensitivities. He has found that many of the GWI patients test positive for Mycoplasma Incognitus, an air-borne disease. Mycoplasma Incognitus could give all the symptoms common to CFS and FMS, as well as several others. He is expanding his studies to include non-GWI people who have CFS or FMS. Information about his work and about being tested can be found at: http://www.immed.org

Dr. Lindner of Texas has also found that some CFS, FMS, MS, and Lupus patients
are responding to antibiotic therapy. His report (follow the Articles link) is located at: http://www.geocities.com/HotSprings/5983

Very recently, a particular RNase L enzyme abnormality was found as well as evidence of a Stealth Virus. You can read the latest about them at the following sites:

Several of the leading CFS/FMS specialists have suggested that until the cause and its possible transmission route is found, folks should assume that it can be contagious, especially during a "flare". The CDC has gone to great lengths to "prove" that clusters of outbreaks have "nothing" to do with it being contagious; they prefer to use terms like "genetically pre-disposed" to explain such clusters in families. However, they cannot explain the clusters of outbreaks among co-workers or neighborhoods.

"Osler's Web" by Hillary Johnson is a "must read for anybody with CFS or FM. The research has shown that we have elevated interferon-gamma - a cytokine that is not present in folks without infections of some sort. The emergence of Lyme Disease in us may finally explain that unusual elevation. I think that it is very important to realize that if we donate blood, we'd be passing along all of our reactivated viruses, perhaps the immune system IgG subclass deficiency, Lyme Disease (if we have it) and other adverse things we don't yet know. The viruses that have been found (Epstein-Barr, Cytomegalovirus, Herpes Simplex, and HHV6) while they are shared by millions of other people who do not have CFS or FMS, reactivate at will in us. During the 9/22/97 National Conference on CFS, Dr. Reeves of the CDC stated that while not ruling it out, there is no evidence of contagion, but would you want to inflict this disease on others by donating blood or by organ transplantation?

Research has proven that we do not tolerate high-impact exercises or sports. Without doing anything, our muscles have too much lactic acid - giving us that muscle-tiredness, crampy feelings, and spasms. For some reason, our muscle cells do not eliminate that lactic acid properly. Additionally, after exercise, we often become more symptomatic and often have "flares." All doctors familiar with this research urge us to begin some gentle exercise so we don't become immobile. Deconditioning Syndrome is a real potential problem for us and we must try to avoid allowing our muscles to atrophy.

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 (especially the low amino acids) play in the metabolism of fats and carbohydrates. Rather than repeat them here, visit the Abnormalities page. Lastly, with Leaky Gut Syndrome, our food cannot be metabolized correctly.

Based on the anecdotal reports on the newsgroups, it appears that the folks who stop depending upon carbohydrates, sugar, and caffeine to boost their energy, and instead eat primarily low-fat proteins, do better. First of all, your blood sugar will remain more stable. Secondly, you may find that you can lose some weight - as long as you do not take in more protein than your body can use (unused protein is turned to fat). You can test this for yourself. You may find that your pain level decreases by avoiding carbohydrates, and increases when you do. Please do make sure you have added essential vitamins and minerals to minimize the risks inherent in such a diet.

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:

Hair loss can be caused by many illness, syndromes, and/or diseases. Hair loss is called alopecia. If it falls out in obvious patches, it's called alopecia areata. Some scientists believe the body's immune system mistakes hair follicles for foreign tissue and attacks them. Even women can get male-pattern baldness (but usually not as extensively), and that may be because of genetic factors. Factors that are involved in hair loss include heredity, hormones, aging, poor circulation, acute illness, surgery, radiation exposure, skin disease, sudden weight loss, high fever, iron deficiency, diabetes, thyroid disease, some drugs used in chemotherapy, stress, poor diet, and vitamin deficiencies. Neither FMS nor CFS actually causes the hair loss (as far as is known medically), but we generally have one or more of the above possible factors for hair loss.

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. See "Contagious."

All the specialists recommend that any low hormone levels be addressed. If nothing else, hormone replacement therapy will eliminate those hormones from causing their own symptoms of fatigue, depression, hair loss, etc. A couple of doctors believe that low thyroid functioning is the cause of this disease. However, based on anecdotal messages on the newsgroups, replacement therapy apparently will not cure CFS/FMS.

Our bodies have several places where major aspects of our internal systems are regulated. The hypothalamus is in the brain and controls temperature and decides whether there is a threat to the body. If there is, its role is to warn the rest of the body, including the pituitary gland. The pituitary gland is also in the brain and is an endocrine gland. In response to signals from several locations, it secretes hormones that influence body growth, metabolism, and the activity of other endocrine glands. The adrenal glands are also endocrine and are located above each kidney. They produce epinephrine and Norepinephrine and a variety of steroid hormones. Each of these glands influencing and functioning together is called the Hypothalamic-Pituitary-Adrenal Axis. It is important to us because the abnormalities that have been found can be traced back to being a dysfunction in the HPA axis.

That depends on what they are and how often they are used. If they are benzos, then they are potentially harmful. If they are Soma, Baclofen, or Relafen, then the hope is that they are used only for the relaxation of the muscle spasms, instead of being used as though they were as safe as aspirin. In any case, too frequent use of muscle relaxants will cause us to develop tolerance to them, so that we will need more and more to do the job that one used to do.

Not one of the CFS or FMS specialists consider narcotics or heavy-duty analgesics to be appropriate treatments for our pain. This is not because the AMA or the DEA is after them. It's just because those drugs cause more harm than good. As central nervous system depressants, they CAUSE depression by themselves. They may also cause us to develop tolerance to them. CAUTION: Never stop taking narcotics without medical help! You may be physically addicted to them and stopping them without help is dangerous. What else is available to deal with the pain? Please check out my remission page. Additionally, Neurontin, at doses of at least 900mg a day, can be a miracle drug for some people.

Most doctors define "progressive" as a disease that would gradually extend, advance or increase in complexity and severity, eventually causing death. Since CFS or FMS don't cause death by themselves, that's where they're coming from. However, unless we correct the sleeping problems, increase our activity, and begin nutritional supplements, the cascading effects of the HPA axis dysfunction will increase and worsen our symptoms.

These rashes seem to be symptoms of systemic Candidiasis. Folks find that when they are placed on adequate doses of Diflucan or Sporanox, these rashes disappear. We are at increased risk for Candidiasis because our NK cells are usually low.

The medical research has shown that about half of us had suffered some form of abuse. One study indicates that the limbic structures of our brains have been altered by chronic extreme stress, perhaps by this abuse. Could that cause the multitude of our biochemical abnormalities? Apparently not. Check out the Abnormalities Page and form your own opinion.

One of the interesting studies that has come out of the Gulf War Syndrome research indicates that, under extreme stress, the blood-brain barrier (which normally protects the brain from molecules that could harm it) becomes more permeable. It will prove to be interesting as this research is expanded.

Fibromyalgia has often been thought to be caused by a dysfunction in our sleep. We are documented to have decreased Stage 4 (delta wave) sleep. Stage 4 is the stage where the body repairs itself and leaves us refreshed. Without proper amounts of Stage 4 sleep, we do not sleep well, and wake up with discomfort. Studies have proven that sleep deprivation alone will cause FMS symptoms. However, our sleep dysfunction is just another symptom of the syndrome - not the cause. Even when the sleep problems are relieved with medication, the other symptoms do not resolve. However, no improvement in our symptoms will occur if we don't get the sleep problem under control. Benadryl, Valerian Root, the tricyclics, Flexeril, or Ambien are medications that can cause sleep but not interfere with Stage 4 sleep. To learn which drugs adversely effect Stage 4, follow this link: Drugs

My problem is that I sleep too much. Is that a sleep disorder? Does that mean I don't have FMS?

The key to understanding the quality of our sleep is deciding whether it's "restorative" or not. Non-restorative sleep leaves us tired and unrefreshed no matter how long we sleep because we aren't getting enough Stage 4 sleep. People with CFS more often complain of sleeping too much than do people with FMS.

Like lack of Stage 4 sleep, too much stress can cause additional problems for us. It is often listed as a factor in causing flares. As difficult as it may be, most specialists recommend minimizing stress.

There is a large list of symptoms that have been found in folks with this disease. For a complete list, please see the Survey results which contains a complete symptom list. Many doctors try to treat each of the symptoms separately. Folks soon find they are taking many prescription medications for their Irritable Bowel Syndrome, migraines, sleep problems, pain, Restless Leg Syndrome…and on and on. When one realizes that serotonin has a major role in these symptoms, a subtle change in thinking can occur. Folks who have been more successful in treating their FMS/CFS have focused less on each symptom but on the disease as a whole and undertaken making major changes to their diet and adding nutritional supplements. They have found that with the fine-tuning of those supplements has resulted in resolution of most, if not all, of their symptoms and they no longer need any prescribed medications.

The easiest answer is that the hypothalamus controls our temperature and is known to be dysfunctioning in our disease. Another part of the problem might be hypothyroidism. And viruses are infamous for producing low-grade fevers. Then there's TB's night-sweats symptom. And last, but not least, there's the possibility that perimenopause or menopause is exhibiting its major symptom. So my suggestion would be to have one's thyroid and estrogen levels evaluated by a doctor, get a TB test, and have a viral panel done. Once those bases are covered, then you'll know that nothing "serious" is going on, that it might be "just" the disease.

Apparently, not much. The symptoms of each overlap the other by 75-90%. Many of us have evolved through CFS, FMS, and MCS over the years and some of us have been diagnosed with all of them. Folks with GWS are being found to meet the criteria for CFS and FMS. Most CFS, FMS, MCS, and GWS specialists consider them to be the same disease with different main symptoms, i.e., CFS = more fatigue and diffuse pain; FMS = more localized pain; MCS = more allergies; GWS = mainly CFS & FMS.