Chronic Fatigue Syndrome
Take Back Your Life from CFS
Chronic Fatigue Syndrome
Take Back Your Life from CFS
Fibromyalgia is a chronic pain syndrome, which has been described in the literature for over 200 years. It is believed that fibromyalgia may affect millions of individuals in the United States alone. Fibromyalgia, as defined by the American College of Rheumatology, includes: diffused widespread pain, presence of multiple tender points, sleep disturbances, fatigue, reduced exercise tolerance, and irritable bowel syndrome.> Previous research involving muscle biopsies of tender points/sites, analyzed for high-energy phosphate levels, mainly adenosine triphosphate (ATP), revealed decreased energy compounds, suggesting a metabolic abnormality². Therefore, some have argued that by replenishing these decreased energy levels, symptoms may be lessened or alleviated. D-ribose, a naturally occurring pentose sugar, aids in the formation of adenine nucleotides, via an intermediate compound called phosphoribosyl-1-pyrophosphate (PRPP), which is essential for de novo synthesis and salvage of nucleotides 5. Since the majority of fibromyalgia patients complain of chronic fatigue and with the possibility that reduced ATP levels are present at points of tenderness, supplementation of D-ribose may offer a clinical benefit in lessening or relieving symptoms to improve one’s quality of life.
The goal of this study is to determine the potential benefit of D-ribose versus placebo in patients afflicted with the diagnosis of fibromyalgia. Endpoints of this study will assess levels of relief in symptoms of fatigue and pain, as well as potential benefits in their quality of life, assessed by questionnaires. Summary of Objectives:
- Demonstrate a significant reduction in the symptoms of pain and fatigue
- Demonstrate an improvement in ones quality of life
Definition of Chronic Fatigue Syndrome
Clinically evaluated, unexplained, persistent, or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.
Concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
- Self-reported impairment in short term memory
- Sore throat
- Tender cervical or axillary lymph nodes
- Muscle pain
- Multijoint pain without joint swelling or redness
- Headaches of a new type, pattern, or severity
- Non refreshing sleep
- Postexertional malaise lasting more that twenty-four hours
- Problem with the definition is that it is a research definition and excludes many people with the syndrome.
A history of widespread pain. The patient must be experiencing pain or achiness, steady or intermittent, for at least 3 months. At times, the pain must have been present:
- On both sides of the body
- Both above and below the waist
- In the Mid-body-for example, in the neck, midchest, midback, or headache.
- Pain on at least eleven of the eighteen tender points
- Problem with the definition is that it is a research definition and excludes many people with the syndrome.
Basic dysfunctions can be generalized to be characterized by:
- Disordered sleep
- Hormonal deficiencies (not picked up on standard blood tests)
- Nutritional deficiencies
- Mitochondrial dysfunction
- Chronic Sinusitis
- Multiple Chemical Sensitivity (MCS)
- Sensitive to medications
- Sensitivity to temperature or barometric changes
- Intolerant to alcohol
- Low blood pressure
- Low grade fevers
- Heart palpitations
- Frequent infections
- Irritable Bowel Syndrome
- Headaches (migraine and tension)
- Autoimmune diseases (lupus, RA)
- Restless Leg Syndrome
- Weight Gain
- Increased thirst
- Low body temp
- Insulin resistance
- Yeast overgrowth
- Carpal tunnel syndrome
New Standard for the Treatment of Chronic Fatigue Syndrome and Fibromyalgia
Chronic fatigue syndrome and fibromyalgia are complex diseases that involve multi-system disturbances and abnormalities. Because of this complexity, these conditions have been poorly treated by the current medical system in this country.
These conditions do not lend themselves to be successfully treated with the eight to fifteen minute visits that address only a portion of the wide spectrum of underlying dysfunctions. Through a more detailed evaluation and specialized testing, all identifiable etiologies contributing to the symptomotology may be appropriately addressed, and when multifaceted treatment is instituted that addresses the entire spectrum of these diseases, truly remarkable success and total cures can be obtained.
In general, successful treatment can be viewed in components. Treatment needs to be individualized, components may occur in different order and multiple components are often addressed simultaneously, but these can be broken down as follows:
Component One: Stabilize the Patient
This is a component in which pain and sleep disturbances are addressed. This may include the use of sleep medications, pain medications and antidepressants. This is in general a temporary “stop gap” phase because as the treatment progresses and the underlying problems are addressed, the medications that “mask the symptoms” are no longer needed. Unfortunately, the overwhelming majority of patients are never brought past this stage by their doctors. This is because this component is the limit of training for most doctors, but it really should only be the first step.
Component Two: Mitochondrial Enhancement
This component is actually integrated throughout the treatment program and tapered as the patient returns to normal functioning. The mitochondria are the energy producers of the cells and are critical for normal functioning. But they are shown to be poisoned in these conditions, leaving the cells starving for energy.
Many things can poison the mitochondria including hormonal deficiencies, toxins and infections. Mitochondria dysfunction may be the common denominator and underlying mechanism that explains the symptoms of CFIDS/FM. In addition to the treatments above to rid the body of the offending agents, specific nutrients can be given to jump start the mitochondria and get the body functioning again. These can also be administered orally or via an intravenous route
Component Three: Balance the Hormones
There are a number of hormonal deficiencies with these conditions that must be addressed to assure successful treatment. Unfortunately, these hormonal deficiencies are often missed or poorly treated because doctors have come to rely on standard blood tests that require an intact pituitary and hypothalamus for diagnosis and dosing of hormone levels. There is, however, severe hypothalamic and pituitary dysfunction with these conditions, making the standard blood tests inadequate. Some typical hormones functions, not just levels, that need to be evaluated include thyroid function, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolone, estradiol, progesterone, among others. When they are properly treated and balanced, tremendous results can be achieved.
Component Four: Treat the lnfectious Components
There are multiple infections that either may be the cause of CFIDS/FM or contribute to the dysfunction. Because of the immune dysfunctions, there is often more than one infection that must be addressed. Potential pathogens include a variety of viruses such as Epstein Barr (EBV), Cytomegalovirus(CMV), Human Herpes Virus 6 (HHV6), Enteroviruses, such as Coxsackie, Echo, and Stealth virus. Bacterial infections include intracellular organisms such as mycoplasma, Chlamydia pneumonia, Borrelia burgdorferi (Lyme disease) and ehrlichia. A number of yeasts such as Candida and parasites must also be evaluated. Infections with many of the above organisms will also further suppress the immunity, often resulting in further infections with other organisms.
Thus, many organisms must be evaluated and treated along with an assessment and treatment of the immune system. If a poor immune system is not addressed, successful eradication of the organisms is not likely, even with the most potent treatments. Treatment may be administered with oral medications or via an intravenous route.
Component Five: Address Unique Etiologies
There are a number of problems that must be addressed in select patients. For instance, some individuals have a coagulation defect that is set off by a chronic infection. This results in the laying down of a fibrin coating on the lumen of the vessel causing impaired oxygen and nutrient transfer. This can result in fatigue, muscle aches and “brain fog”. If suspected, diagnosis requires specialized testing. If not treated, not only are the cells starved for oxygen and nutrients, but it is very difficult to eradicate any infection because they will “hide” in the fibrin coating. Also, if the organism is one that produces neurotoxins, this must also be addressed. These substances can remain in the body and continue to cause symptoms long after the organism that produced them are gone. Special testing and protocols must be done to rid the body of these tiny toxins.
Component Six: Maintenance
Here is where the patient is weaned to just a few core medications and supplements to remain symptom free and maintain their health. Significant recovery or complete resolution of symptoms is the rule rather than the exception when a multifaceted treatment plan is instituted.
Chronic Fatigue Syndrome and Fibromyalgia – Now Treatable Diseases
Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are illnesses that often coexist and affect millions of Americans. Symptoms vary amongst individuals and commonly include severe fatigue, sleep disturbances, cognitive problems, commonly called brain fog, muscle pain and multiple infections. Unfortunately, many individuals and physicians continue to deny that these syndromes are legitimate diseases. The medical literature is, however, very clear that these are legitimate diseases and individuals with these syndromes have measurable hypothalamic, pituitary, immune and coagulation dysfunction. These abnormalities then result in a cascade of further abnormalities, in which stress plays a role by suppressing immunity and hypothalamic-pituitary function. The pituitary and hypothalamic dysfunction results in multiple hormonal deficiencies that are often not detected with standard blood tests, as well as autonomic dysfunction, including neutrally mediated hypotension. The immune dysfunction, which includes natural killer cell dysfunction, results in opportunistic infections and yeast overgrowth, making the symptoms worse. Recent studies have shown that the coagulation dysfunction is usually initiated by a viral infection and has genetic predisposition. This abnormal coagulation results in increased blood viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue and decreased cognition (brain fog). Neurotransmitter abnormalities and macro and micro nutrient deficiencies have also been shown to occur with these disorders.
Current research suggests that many triggers can initiate a cascade of events, causing the hypothalamic, pituitary, immune and coagulation dysfunction. The most common initiating cause is a viral or bacterial infection, which is very commonly Epstein Bar Virus (EBV), Cytomegalovirus (CMV), HHV6, mycoplasma, Chlamydia pneumonia or Lyme’s disease. When specialized testing is utilized, these infections are found in 30-80% of CFS and FM patients. Many people with these syndromes can pinpoint the start of their disease to a viral infection that never got better usually during significant life stressors.
Effective treatment, with 70 to 90 percent of individuals achieving significant clinical benefits, can be achieved by simultaneously treating the above problems that an individual is found to have. The mix of treatments needed varies from patient to patient, but there is consistent abnormal pathophysiology. For instance, a high percentage of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals because of the pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3 is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions. In addition, adrenal insufficiency and growth hormone deficiency are also very common with these disorders, and supplementation with these hormones can often have profound effects. As with thyroid testing, these deficiencies are, unfortunately, usually not detected with the standard screen blood tests and require more specific testing.
When an individual is found to have one of the viruses discussed above, these can be treated with resulting improvement in symptoms. It can require a combination of medications, supplements and sometimes intravenous treatments to eradicate some of the persistent infections.
Although a concept that is sometimes uncomfortable and foreign to traditional medical styles of thinking, the need for multiple interventions is required for effective treatment of an illness that affects a critical control center (such as the hypothalamus), which impacts the multiple systems noted above. Unfortunately, there is not a single treatment that reverses hypothalamic dysfunction directly. Thus, this situation is different from illnesses that affect a single target organ and which can be treated with a single intervention. For example, pituitary dysfunction itself often requires treatment with several hormones. This effect is multiplied in hypothalamic dysfunction, which affects several critical systems in addition to the pituitary gland. An integrated treatment approach based on simultaneously treating the above problems is significantly beneficial in CFS and FMS. Individuals with these devastating syndromes can “get their lives back” despite the fact that they were previously told, “There is nothing that can be done,” or “It is all in your head.”
Are All Chronic Fatigue Syndrome / Fibromyalgia Patients Low Thyroid?
There is mounting evidence that there is low thyroid activity present in the majority of chronic fatigue syndrome and fibromyalgia patients. Studies demonstrate that in addition to an increased incidence of primary hypothyroidism in chronic fatigue syndrome and fibromyalgia, there is a combination of secondary, tertiary and thyroid resistance in the overwhelming majority of CFS and FM patients, despite having normal thyroid tests because these latter forms of tissue hypothyroidism are not detected by standard thyroid function tests. Thus, many chronic fatigue syndrome and fibromyalgia patients are erroneously told over and over that their thyroid levels are fine.
TSH is secreted by the pituitary in the brain and stimulates the thyroid to secrete T4, which is not the active thyroid hormone. T4 must then be converted in the body to the active thyroid hormone T3. When T4 and T3 levels drop, the TSH should increase indicating hypothyroidism. This is the standard way to diagnose hypothyroidism and is the only way that the majority of physicians (endocrinologists, internists, family practitioners, etc.) know how to test for low thyroid levels. There are, however, multiple abnormalities in CFS and FM that result in tissue hypothyroidism that are not detected using the standard TSH, T4 and T3 testing. In fact, standard thyroid tests fail to detect tissue hypothyroidism 80-90% of the time in patients with chronic fatigue syndrome and fibromyalgia.
There is clearly hypothalamic and pituitary dysfunction in these conditions (can potentially be caused by viruses, bacteria, stress, yeast, inflammation, toxins, pesticides, plastics and mitochondria dysfunction). The hypothalamic dysfunction results in the production of TSH that has diminished biological activity so there are lower T4 and T3 levels for any given level of TSH. In addition, the pituitary dysfunction results in a diminished secretion of TSH, masking low tissue thyroid levels as the TSH is usually in the normal range. Very few doctors understand the significance of this and incorrectly state that the thyroid is fine based on a normal TSH level.
Furthermore, many chronic fatigue syndrome and fibromyalgia patients have relatively diminished T4 to T3 conversion and a relatively increased T4 to reverse T3 conversion, also resulting in low tissue levels of active thyroid hormone levels despite having a normal TSH. (See the handout Fatigued, Depressed, Difficulty Losing Weight). The type II deiodinase that converts T4 to T3 is down regulated in chronic fatigue syndrome and fibromyalgia while the type III deiodinase enzyme that increases T4 to reverse T3 (rT3) is unregulated in these conditions. This maladaptive response decreases the T3/rT3 ratio, further diminishing tissue thyroid levels but are also not detected by standard testing. The T3 and rT3 levels can be measured and the ratio calculated, but merely finding normal T3 and reverse T3 levels is not adequate to detect this abnormality.
Another significant cause of low tissue thyroid levels in chronic fatigue syndrome and fibromyalgia that is not detected by standard testing is the fact that there has been shown to be a peripheral thyroid hormone resistance found in these patients, meaning that there is a diminished thyroid effect for a given amount of thyroid hormone in the blood. This has been discounted in the past, but more and more evidence is surfacing proving that this is indeed a significant problem with these conditions.
The combination of factors present in chronic fatigue syndrome and fibromyalgia, including hypothalamic and pituitary dysfunction, diminished T3/rT3 production ratios and thyroid resistance, results in most, if not all, chronic fatigue syndrome and fibromyalgia patients having inadequate tissue thyroid effect. T4 preparations such as Synthroid and Levoxyl rarely work and Armour thyroid, a pig glandular product, is somewhat better, but definitely not adequate for most patients. The treating physician must know when to use a T4/T3 combination or straight T3. T3 works the best for many of these patients, but Cytomel, a very short acting T3 available at normal pharmacies, is also a poor choice because the varying blood levels can cause significant side effects. Compounded timed release T3 is usually the best treatment. However, to achieve significant improvement, the treating physician must be very knowledgeable about T3 and must realize that when on T3, standard blood tests will lead one to dose incorrectly and not obtain significant benefits. This includes doctors who previously felt that they were thyroid experts and had been using thyroid with chronic fatigue syndrome and fibromyalgia for a long time. Ultimately, it is the expertise and dosing of the T3 or T4/T3 combinations and the makeup of the medications that determines the optimal treatment regimen and is one major component in the treatment of chronic fatigue syndrome and fibromyalgia.
This study shows that low-dose hydrocortisone results in significant reduction in self-rated fatigue and disability in patients with chronic fatigue syndrome…The degree of disability was reduced with hydrocortisone treatment, but not with placebo. Insulin stress tests showed that endogenous adrenal function was not suppressed by hydrocortisone (9
A subsequent commentary by Teitelbaum published in JAMA states, “Our previously published pilot study and the work of Jefferies suggests that using low-dose hydrocortisone in CFS as dosages of 7.5 mg to 20 mg/day is safe and effective. These low dosages have not caused adrenal suppression…We recently completed a randomized, double-blind study that tested the effectiveness of treating patients with fibromyalgia and CFS for hypothalamic dysfunction in an integrated manner. This included treating suspected hormonal deficiencies (including low hydrocortisone) and the sleep disorder simultaneously. Using this protocol in 72 patients resulted in a significant improvement in active vs. placebo group.” 42 Cortisol replacement appears to be an essential part of a comprehensive treatment approach that can be used successfully in the treatment of CFS and FM (31,42).
Fibromyalgia: Seven foods to avoid
While there may not be a single set of dietary guidelines that are right for all fibromyalgia patients, there are certain foods, or food groups, that appear to make a difference for a significant number of people. But remember, avoiding these foods is not a guarantee that your symptoms will change. Also, avoiding one group may offer benefit while another may make no difference at all. Nevertheless, the experts WebMD talked to agree that eliminating at least some of these foods is worth a try.
1. Aspartame (NutraSweet). All the experts WebMD talked to agree that for a large majority of people with fibromyalgia, foods sweetened with aspartame could exacerbate fibromyalgia symptoms.
“There is a pain receptor in the nervous system known as NMDA,” says McNett. “When pain turns from acute to chronic, it involves opening the NMDA pain receptor. Aspartame, which is classified as an excitotoxin, helps to stimulate this event.” He also says people with fibromyalgia appear to already have overly active NMDA pain receptors, making them more susceptible to the stimulation.
In one study published in the Journal of Rheumatology in 2006, experts found patients with fibromyalgia did have an increased expression of NMDA receptors in their skin. This indicated a general increase in activity of peripheral nerves.
Fibromyalgia: Seven foods to avoid continued…
Holtorf says aspartame may play a role in stimulating those nerve pathways. Then he adds that for some people, “cutting it out of their diet can have a dramatic impact on pain.”
That appeared to be the case for patients in one small study published in the Annals of Pharmacotherapy in 2001. Researchers found that, when patients with fibromyalgia avoided aspartame as well as the flavor enhancer MSG, they felt better overall.
Other artificial sweeteners such as Splenda, saccharin, and stevia do not appear to have the same effect as aspartame.
2. Food additives including MSG (monosodium glutamine) and nitrates. MSG is an additive or flavor enhancer that’s found in many processed and frozen foods and in some Asian cuisines. Experts say it can intensify pain symptoms in many individuals. Like aspartame, MSG is classified as an excitotoxin and has the same potential for affecting NMDA receptors.
The same is true, says McNett, for foods containing preservatives such as nitrates, commonly found in lunchmeats like ham or bologna or in bacon.
“A lot of people who don’t have fibromyalgia can’t tolerate nitrates or MSG very well. But one of the hallmarks of this condition is that it amplifies unpleasant reactions,” McNett says. “So a stimulus that some people would find mildly unpleasant becomes very unpleasant in those who have fibromyalgia.” Cutting these ingredients out of the diet, he adds, usually helps.
3. Sugar, fructose, and simple carbohydrates. There is no clear evidence that cutting out simple carbohydrates — like sugar, cake, or white bread — will have an impact on fibromyalgia. What it can do, though, is reduce symptoms of chronic yeast infection — a fungus that thrives on sugars and may be a secondary condition contributing to the pain of fibromyalgia. This theory, however, is still being debated by experts.
“Cutting out sugary foods, particularly high fructose corn syrup, can make a difference in these patients,” says Holtorf. “And that’s independent of any weight loss that might occur when they stop eating these foods.”
Shikhman adds that cutting out carbonated beverages sweetened with fructose may yield even more noticeable results. That’s because the carbonation, he says, causes a metabolic reaction. This reaction results in much more sugar pouring into the blood much more quickly.
“It’s this quick rise in blood sugar,” Shikhman says, “followed by the subsequent fall that exacerbates the fatigue element of fibromyalgia. That, in turn, creates more cravings for sugar, followed by still more fatigue — allowing a vicious cycle to develop.” Cutting out the sugar, he says, particularly soda, can result in better, more even control of blood sugar. Better control will help reduce fatigue and at least some of the related pain.
4. Caffeine — including coffee, tea, colas, and chocolate. Because it is considered a stimulant, many fibromyalgia patients turn to caffeine-rich beverages as a source of energy. But McNett says the boost you get is false — and can quickly exacerbate fatigue.
Fibromyalgia: Seven foods to avoid continued…
“The problem with caffeine is that the ‘up’ is relatively brief and transient,” he says. “And it’s followed by substantially longer and deeper sedative effect.”
Because people with fibromyalgia are already tired, McNett cautions, those sedative effects can be much more powerful. “They are starting off from a point of fatigue, so the sedative qualities are amplified — leading to a much deeper and long lasting sense of fatigue.”
The good news is that cutting out caffeine can make a difference within less than a week. “Most patients begin to see a difference in their fatigue level almost right away,” he says.
5. Yeast and gluten. Although these are two separate food substances, they frequently appear together — particularly in baked goods like cake, donuts, and bread. For this reason, cutting out one, usually means you are cutting out both. That can actually yield two separate benefits for people with fibromyalgia.
In the case of yeast, some doctors say it fosters the overgrowth of the yeast fungus in the body. This overgrowth may cause or exacerbate much of the joint and muscle pain experienced by people with fibromyalgia. Research, though, has yet to confirm this link.
Gluten can exacerbate a condition known as gluten intolerance. Gluten intolerance, Shikhman says, frequently results in a variety of stomach ailments and other digestive problems. It also is associated with fatigue in patients with fibromyalgia.
“I have seen people with and without fibromyalgia experience enormous positive changes in their health by simply cutting out gluten products,” Shikhman says.
6. Dairy. Be they low fat or high fat, some experts say, dairy products — particularly, milk — have been known to drive the symptoms of fibromyalgia. Avoiding these products may help some people turn their health around.
On the other hand, if you feel as if milk is doing your body some good, keep chugging a glass or two of skim milk a day. It’s got calcium to build bones and protein to build muscle, and it’s fat free.
7. Nightshade Plants: Tomatoes, chili and bell peppers, potatoes, and eggplant. There are over 2,000 species of plants that that can be listed under the category of “nightshade.” Those which are edible comprise a group that some say can trigger flares of various types of arthritis, including fibromyalgia.
“I have seen patients who do much better when they cut these foods out of their diet,” says Holtorf. We’re not sure why, but it seems to work in a significant percentage of fibromyalgia patients.” At the same time, these vegetables are among the most nutritious. So if they don’t trigger your fibro pain, don’t ban them from your fridge.
A final word – Nutrients and the power of a healthy diet
Avoiding certain foods may help individual patients better cope with their disease. Nutritionist Samantha Heller, MS, RD, says, however, that most can also benefit from an overall heart-healthy approach to good eating.
A final word – Nutrients and the power of a healthy diet continued…
“When you are eating a heart-healthy diet – one low in saturated fat, lean meats, and poultry and high in the fresh fruits and vegetables that don’t cause you problems, your body is going to work in a more healthful way, ” Heller says.
And while, she says, this won’t necessarily reduce your fibromyalgia symptoms, it can help to reduce the risk of other ailments that can only compound your health issues.
“When your body is healthier overall,” says Heller, “you may be better able to cope with any disease, and better able to respond to even small changes you make.”
One small study published in the journal Complementary and Alternative Medicine in 2001 found that patients who ate a vegetarian diet consisting of mostly raw whole foods did see a reduction in their fibromyalgia symptoms.
Holtorf also believes that sticking to a heart-healthy diet may yield some specific helpful effects. “Patients with fibromyalgia have documented mitochondria dysfunction,” he says. “This is the area of the cell where energy is made. Consequently, it’s necessary to have high levels of nutrients to get the mitochondria to work and for energy to be produced.” So, Holtorf adds, the higher your level of dietary nutrients, at least theoretically, the better off you might be.
What can also help, he says, is a high potency vitamin supplement as well as supplements containing omega 3 fatty acids. Omega 3 fatty acids — which are also found in foods such as fish oil, flax seed, walnuts, some fortified cereals, and eggs — are the “good fats” that have been shown to have an impact on inflammation.
“For some fibromyalgia patients,” Holtorf says, “they work extremely well.” Then he adds, “It is definitely worth a try.”