Chronic Fatigue /
Fibromyalgia Syndrome

Chronic Fatigue / Fibromyalgia Syndrome: Overview

Alternative names: Myalgic Encephalomyelitis, ME

Chronic Fatigue Syndrome (CFS) is described as a severe, debilitating fatigue, lasting at least six months (of new and definite onset), associated with at least four of the following symptoms: impaired memory or concentration, sore throat, lymphadenopathy, muscle pains, joint pains, new headaches, unrefreshing sleep, and post-exertion malaise.

Fibromyalgia Syndrome (FMS) is a pain disorder associated with multiple tender points, sleep disturbances (insomnia and non-restorative sleep), and fatigue.  Hypothalamic dysfunction, immune dysfunction, and nutritional inadequacies can all cause or perpetuate this sometimes severe syndrome.

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Chronic Fatigue and Fibromyalgia are officially classified as 'syndromes', which means each condition is a collection of signs and symptoms that are known to occur together, without a known cause.

Back and front images of a woman with 18 tender point locations
A unique feature of fibromyalgia is multiple tender points on the body. Sensitivity in 11 or more of the 18 points suggests FMS.

CFS and FMS may be opposite ends of the same disorder.  With CFS the emphasis is on fatigue; with FMS the emphasis is on the pain.

Research suggests that CFS and FMS occur when parts of the brain that control perception of fatigue and pain become damaged during an episode of glandular fever or a number of other common viral infections.

Fibromyalgia is thought to be a mainly neurological phenomenon, with much of the pain being the result of the brain amplifying signals from the nerves.

Incidence; Causes and Development; Contributing Risk Factors

Most common in women over 30, it can affect men and children as well.

No single causative agent has been found.  Many viruses have been considered and may play a role in CFS including the Epstein-Barr virus (EBV) and Cytomegalovirus (CMV).  Human herpes virus 6 is under investigation.

Fibromyalgia develops slowly over many years, making the condition very difficult to diagnose in the early stages.  It usually is well advanced before it is suspected.  Educating yourself about this condition is the best way to catch it early.  If any other family members have it, your chances of having it are increased.  This is an important clue, for successful early diagnosis and treatment.

Based on a study by the University of Washington of over 1,400 individuals, it was found that those who drank well water on a regular basis during childhood were 10 times more likely to develop fibromyalgia than those who did not.  Since many wells contain environmental toxins such as pesticide run-off, we feel there could be a definite link, especially since fibromyalgia seems to be a central nervous system disease.

In one study, 75% of urine specimens obtained from CFS patients contained elevated levels of 5-HIAA, (5-hyroxyindole acetic acid), a breakdown product of serotonin.  This recent finding also showed that 70% of those taking NADH returned to normal levels of 5-HIAA, while 70% of placebo patients continued to show elevated or increasing levels of 5-HIAA.  The urinary measurement of 5-HIAA may help predict which CFS patients respond to NADH therapy.  However, if a person is taking guaifenesin, levels of 5-HIAA may be falsely elevated.

Signs and Symptoms

Transparent 3D head model showing a foggy brain inside
The concentration and memory problems of fibromyalgia and chronic fatigue syndrome are known as "fibro fog".

The key symptoms are disabling fatigue, diffuse achiness that is worse with exercise, disordered sleep, brain fog (decreased memory and/or concentration), and perhaps increased thirst, all for more than six months.  After demanding physical exercise, chronic fatigue syndrome patients show impaired cognitive processing.

If these symptoms are persistent and not caused by other untreated organic problems such as anemia, cancer, diabetes, lupus, polymyalgia rheumatica, or a chronic infection such as sinusitis or Lyme's disease, then a comprehensive treatment approach will likely help.  CFS and fibromyalgia are not "all or nothing" problems.  Like arthritis and many other illnesses, they occur in varying degrees of severity.

Diagnosis and Tests

Both CFS and FMS can be difficult to diagnose.  There are currently no lab tests to confirm what remains a clinical diagnosis.  Many doctors encourage a comprehensive approach.  Other medical and psychiatric conditions that can produce fatigue should be ruled out, including Lyme's disease.

Treatment and Prevention

There are many treatment choices available in alternative medicine so it is necessary to find what works best for you.

The following is a summary of important areas that may require treatment in CFS and FMS.

Hormone Imbalances: Consider and treat as necessary hypothyroidism, low or borderline adrenal function, and sex hormone deficiencies.  DHEA and 7-Keto DHEA may be useful; routine endocrine tests are normal in suspected cases of fibromyalgia.  Current research is focusing on growth hormone irregularities.  Insulin-related growth factor-1 (IGF1) is secreted mainly by the liver in response to growth hormone release.  Growth hormone deficiency in adults has been associated with many symptoms that are similar to those described by fibromyalgia patients: low energy, poor general health, reduced exercise capacity, muscle weakness, cold intolerance, impaired cognition, dysthymia and decreased lean body mass.  IGF1 levels are often found to be low in FMS patients and the few studies done so far have found symptomatic improvement of CFS and FMS patients with growth hormone injections.

3D transparent model of a brain showing the basal ganglia
Patients with CFS have decreased activation of the basal ganglia (colored above) in response to reward

It is likely that the problem in cases of FMS is a "physiologic growth hormone deficiency".  Evidence of this was provided by a study in which FMS patients were exercised to voluntary exhaustion on a treadmill; this is a standard test of growth hormone secretion.  Unlike healthy controls, FMS patients were unable to mount a growth hormone response to exercise despite reaching an anaerobic threshold (an indication of an adequate exercise workload).  However, when fibromyalgia patients were given pyridostigmine 1 hour prior to exercising, they were able to mount a reasonable growth hormone response.  As pyridostigmine is known to reduce somatostatin tone in the hypothalamus, this result is compatible with the notion that growth hormone deficiency in fibromyalgia cases is a potentially reversible problem that has a physiologic basis i.e. increased hypothalamic somatostatin tone. [Eduardo S. Paiva, Atul Deodhar, Kim D. Jones, Robert Bennett; Oregon Health Sciences University, Portland (press release)]

Immune Dysfunction: Immune dysfunction has been documented in cases of CFS and CFS has been called chronic fatigue immune dysfunction syndrome (CFIDS).  The immune dysfunction may result in recurrent infections, often with normally non-pathogenic organisms such as Candida albicans or bowel parasites.  Treat any bowel infections or imbalances and any sinusitis or nasal congestion.

Nutritional Inadequacies: Nutritional deficiencies, especially of the B-complex vitamins, magnesium or iron may be aggravated by malabsorption or increased utilization.  Treat any magnesium deficiency preferably with magnesium malate.  Sometimes magnesium by injection or IV is used.

Do not consume any sweets, alcohol or caffeine for three to six months, and then limit them to moderate amounts.  Expect withdrawal symptoms during the first week.

Consider vitamin B12 injections at higher doses (2,000-5,000mcg) at least once per week and possibly more for at least eight to ten weeks.  Consider treating persistent fatigue with CoQ10, evening primrose oil and possibly fish oil.

Liver detoxification and hidden food allergy management can be important and should not be overlooked.  Get as much sleep as you need, or at least eight hours per night.  Be sure to exercise, slowly at first and more with improvement, but be cautious about over-exertion.  Seek to resolve unconscious life conflicts.

All underlying problems should to be treated simultaneously or a vicious cycle can be kicked into action in which each problem can trigger the others.  Some call this the "fatigue cycle".

Diagnosis and treatment are combined in the use of the decongestant guaifenesin (often called "guai" by users).  Dr. St. Amand in his book What Your Doctor May Not Tell You About Fibromyalgia gives an excellent presentation on the subject with full details of "guai" use.  He does not distinguish between Chronic Fatigue Syndrome, Fibromyalgia or Candida, using "guai" for them all.  This protocol requires the careful avoidance of all salicylates and a hypoglycemic diet if low blood sugar is a factor.  There are extensive web sites on its use.

Complications

The primary complications of CFS-FMS come from the overall lethargy that the condition causes.  Many patients struggle with depression, keep themselves socially isolated, and miss work due to the pain and exhaustion.

Signs, symptoms & indicators of Chronic Fatigue / Fibromyalgia Syndrome:

Lifestyle

Symptoms - Environment

(Minor/major) pain in cold/cool/damp weather

Cold, damp weather can worsen the pain at fibromyalgia tender points.  Fibromyalgia produces a shortening and tightening of muscle fibers; cold weather also contracts muscles, making symptoms worse.

Counter-indicators
No pain in cold/cool/damp weather

Cold, damp weather can worsen the pain at fibromyalgia tender points.  Fibromyalgia produces a shortening and tightening of muscle fibers; cold weather also contracts muscles, making symptoms worse.

Symptoms - General

Counter-indicators

Symptoms - Glandular

(Frequent/multiple) swollen cervical nodes

The lymph nodes involved in CFS are small, moveable, not tender and most commonly involve the neck, axillary region or inguinal region.  A single lymph node that is very large, tender or immovable suggests a diagnosis other than CFS.  Similarly, generalized adenopathy suggests a diagnosis other than CFS.

(Frequent/multiple) swollen axillary nodes

The lymph nodes that are associated with CFS are small, moveable, not tender and most commonly involve the neck, axillary region or inguinal region.

(Frequent/multiple) swollen inguinal nodes

The lymph nodes that are associated with CFS are small, moveable, not tender and most commonly involve the neck, axillary region or inguinal region.

Counter-indicators

Symptoms - Head - Eyes/Ocular

Symptoms - Head - Mouth/Oral

Gradual/rapid decline in speaking ability

Fibromyalgia sufferers can have difficulty speaking or making themselves understood.

Symptoms - Head - Nose

Symptoms - Metabolic

Counter-indicators

Symptoms - Mind - General

Symptoms - Muscular

Counter-indicators

Symptoms - Nails

Symptoms - Nervous

Symptoms - Reproductive - Female Cycle

Symptoms - Skeletal

Symptoms - Skin - Conditions

Symptoms - Sleep

(Somewhat) disturbed sleep

Based on doctors' estimates, sleep disturbances are experienced by approximately 75% of Chronic Fatigue and Fibromyalgia sufferers.

Counter-indicators
Being a deep sleeper

Based on doctors' estimates, sleep disturbances are experienced by approximately 75% of Chronic Fatigue and Fibromyalgia sufferers.

Symptoms - Urinary

Conditions that suggest Chronic Fatigue / Fibromyalgia Syndrome:

Allergy

Environmental Illness / MCS

MCS is a distinct illness that many times is diagnosed secondarily to CFS and/or fibromyalgia.

Circulation

Counter-indicators
Anemia

If anemia is identified as a problem then the likelihood of CFS is reduced.  Therefore, it is wise to rule out anemia first, because both can contribute to similar symptomology.  Of course, it is not impossible for both to occur simultaneously, but this is less likely.

Dental / Oral

Female-Specific

Vulvodynia / Vestibulitis

Dr. St. Amand, MD, specializing in fibromyalgia and author of What Your Doctor May Not Tell You About Fibromyalgia believes that all women with chronic vulvodynia have a form of fibromyalgia.  He discovered that at least 11% of his female patients with fibromyalgia also have vulvodynia (painful genitals).  The guaifenesin therapy for chronic fatigue enhances oxalate crystal excretion which has been shown to be beneficial in vulvodynia also.

Immunity

Counter-indicators

Mental

Anxiety

Depression or anxiety may occur as a result of the chronic pain and fatigue, or the frustration felt with this condition.  It is also possible that the same chemical imbalances in the brain that cause fibromyalgia also cause depression and anxiety.  Some 24% of patients suffer from anxiety.

Musculo-Skeletal

TMJ Problems

TMJ disorders occur more often among those with CFS.

Skin-Hair-Nails

Sleep

Risk factors for Chronic Fatigue / Fibromyalgia Syndrome:

Environment / Toxicity

Family History

Symptoms - Food - Beverages

Symptoms - Head - Ears

Symptoms - Muscular

Symptoms - Sleep

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Chronic Fatigue / Fibromyalgia Syndrome suggests the following may be present:

Circulation

Hypercoagulation (Thickened Blood)

Studies show that 79-92% of CFS/FMS patients have a hypercoagulation defect.

Raynaud's Phenomenon

Raynaud's phenomenon is found in between 30% to 50% of CFS/FMS sufferers.

Digestion

IBS (Irritable Bowel Syndrome)

Research has shown that IBS frequently co-exists with CFS and fibromyalgia.  Depending on the study quoted, between 34% and 73% of CFS/FMS sufferers have Irritable Bowel Syndrome.

Increased Intestinal Permeability / Leaky Gut

The leakage of toxic waste from the gut into the bloodstream is believed to be a primary cause of Chronic Fatigue.

Hormones

Low HGH (Human Growth Hormone)

It has been known for 25 years that FM patients have an abnormal sleep pattern involving stages 3 and 4 of non-REM sleep.  As GH is secreted predominantly during stages 3 and 4 of non-REM sleep, it was originally hypothesized that FM patients may have impaired GH secretion.  IGF-1 levels are abnormally low in some fibromyalgia patients.

In an analysis of IGF-1 levels in 500 female FM patients and 152 age matched non-FM subjects the mean IGF-1 level in the FM patients was 137 +/- 58ng/ml versus 216 +/- 86ng/ml in controls.  Eighty-five percent of the FM patients had IGF-1 levels below the 50th percentile of the control population and 56% fell below the 20th percentile.

Immunity

Immune System Imbalance (TH2 Dominance)

CFS patients are Th2 activated.  This means they over-respond to toxins, allergens, normal bacteria and parasites, and under-respond to viruses, yeast, cancer and intracellular bacteria.

Musculo-Skeletal

Rheumatoid Arthritis

Almost all (98%) of Rheumatoid Arthritis patients report fatigue.  They also report that it is more of a problem than the stiffness and pain.

Organ Health

Liver Detoxification / Support Requirement

In one evaluation of 200 Chronic Fatigue and Fibromyalgia patients it was found that 80% had a significant impairment of liver detoxification function.

Patients suffering from toxic burdens may experience a wide range of symptoms, among them fatigue and poor tolerance for exercise.  These processes have been postulated to be a central factor in the development of CFS.  Oxidative damage to mitochondria and the detoxification process itself is being considered as a fundamental mechanism in the development of CFS. [1 Bland JS, HealthComm Inc., 1997; Int Clin Nutr Rev 1988;8(4): pp.173-5]

Chronic Fatigue / Fibromyalgia Syndrome can lead to:

Circulation

Cold Hands and Feet

Raynaud's phenomenon (severe cold hands and feet) affects about 16% of fibromyalgia sufferers.

Eyes / Ocular

Mental

Depression

70% to 100% (different studies show various numbers) of fibromyalgia patients are found to have depression, though many consider that this is more likely to be a result of the muscular pain rather than part of the cause.

A sample of 69 patients with FM underwent a standardized tender point examination and a semistructured psychological interview and completed a set of self-report inventories.  Of the sample, 39 met criteria for depressive disorder and 30 did not. [Evaluation of the Relationship Between Depression and Fibromyalgia Syndrome: Why Aren't All Patients Depressed?  Akiko Okifuji, Dennis C. Turk, Jeffrey J. Sherman]

Headaches

Severe headaches are experienced by 44-56% of fibromyalgia sufferers.

Chronic Fatigue / Fibromyalgia Syndrome could instead be:

Infections

Gulf War Illness

Although there is not yet a case definition for Gulf War Illness, the chronic signs and symptoms loosely fit the clinical criteria for Chronic Fatigue Syndrome and/or Fibromyalgia Syndrome.

Lyme Disease

Lyme disease should be a differential diagnosis for all fibromyalgia patients who could have been exposed to a tick bite.

Nutrients

Vitamin D Requirement

Some doctors automatically test the vitamin D status of anyone who comes to them with "fibromyalgia", since fibromyalgia is easily misdiagnosed and vitamin D deficiency is easily cured.

Recommendations for Chronic Fatigue / Fibromyalgia Syndrome:

Dental

Dental Metal Removal

Hypersensitivity to dental metals and nickel is frequent in patients with CFS and MCS-like syndromes.  Ongoing metal-induced inflammation can be present in the oral cavity and/or in any other place of metal deposition.  Metal-driven chronic inflammation may affect the hypothalamic-pituitary-adrenal axis (HPA-axis) and trigger a myriad of non-specific symptoms characterizing CFS, MCS and other related diseases.  The removal of metallic restorations can reduce lymphocyte sensitization and improve the health of patients. [Neuroendocrinology Letters, 20: pp.289-298, 1999]

Diet

Raw Food Diet

In one study, 30 people participated in a dietary intervention using a mostly raw, pure vegetarian diet.  The diet consisted of raw fruits, salads, carrot juice, tubers, grain products, nuts, seeds, and a dehydrated barley grass juice product.  19 of 30 subjects were classified as responders, with significant improvement on all measured outcomes, compared to no improvement among non-responders.  This dietary intervention shows that many fibromyalgia subjects can be helped by a mostly raw vegetarian diet. [BMC Complement Altern Med 2001;1(1): p.7]

In another study, the effect of a strict, low-salt, uncooked vegan diet rich in lactobacteria in 18 fibromyalgia patients both during and after a 3-month intervention period was evaluated.  15 patients continued their omnivorous diet as controls.  The results revealed significant improvements in pain reduction, joint stiffness, quality of sleep, and overall scoring in all 3 questionnaires which were used.

The majority of patients were overweight to some extent at the beginning of the study and shifting to a vegan food caused a significant reduction in body mass index.  Total serum cholesterol showed a statistically significant lowering and urinary sodium dropped to 13 of the beginning value indicating good diet compliance.  It can be concluded that a raw vegan diet has beneficial effects on fibromyalgia symptoms at least in the short run. [Scand J Rheumatol 2000;29(5): pp.308-13]

Plant-Based Nutrition

See the link between Chronic Fatigue / Fibromyalgia and Raw Food Diet.

Vinegar

May be an effective aid in the destruction of lipid-enveloped viruses, such as HIV, HHV-6 (strains A and B), EBV, CMV, and herpes.

Aspartame (Nutrasweet) Avoidance

According to researchers and physicians studying the adverse effects of aspartame, chronic fatigue syndrome and fibromyalgia among other conditions can be triggered or worsened by ingesting aspartame.

Therapeutic Fasting

Fasting is reported to help in cases of fibromyalgia, but probably not chronic fatigue syndrome.

Drug

GHB (Gamma-Hydroxybutyrate)

GHB has been reported to help decrease pain and improve sleep amongst fibromyalgia patients.

Habits

Not recommended
Aerobic Exercise

Exercise is often a problem for people with CFS because physical activity can worsen symptoms.  Medical opinion has been divided on whether CFS patients should attempt regular exercise or not – some believe that gentle exercise is helpful, while others caution against any form of aerobic activity at all.  However, a study published in the British Medical Journal found that patient education on CFS and a graded exercise program can greatly improve CFS symptoms in many cases.

Some people with CFS, especially in the weeks or months following onset, are unable to perform the most basic activities, such as showering or walking from one room to another.  In such cases of extreme exhaustion and pain, the person may be confined to their bed.  As time passes, they may feel a little better and attempt regular exercise.  However, aerobic activity can cause a relapse of symptoms that forces the person back to their bed again.  The added problem for CFS sufferers is that a sedentary lifestyle causes a range of other health problems including muscle wastage, loss of bone mass, and increased risk of obesity and cardiovascular disease.

A person with CFS needs a gentle approach to physical activity and should only make tiny increases in the frequency, duration and intensity of their exercise program.  General suggestions include:

  • Aim for no more than three exercise sessions per week.
  • Experiment to find the type of exercise that works best for you.  Choose from a range of gentle activities such as stretching, yoga, Tai Chi, walking and light weight training.
  • Stretching seems to be well tolerated by people with CFS.  You may prefer to perform your stretching program while lying down in bed.
  • Aerobic exercise seems to cause relapses for many people with CFS.  If this is true for you, try non-aerobic forms of exercise like weight training with one-kilogram dumbbells.
  • Learn from past relapses.  For example, if walking for 20 minutes worsened your symptoms, try walking for five minutes and see how that goes.  It may be helpful to keep a diary to keep track of what works and what doesn't.
  • Stop the physical activity well before you feel tired.
  • Remember that your exercise tolerance will differ from one day to the next.
  • Listen to your body – if you don't feel up to exercising on a particular day, don't.
  • Only increase the intensity, time spent or frequency of exercise when you know you can cope with it.  For example, if you can exercise for five minutes without suffering a relapse, try for six minutes.

Hormone

Melatonin

A randomized, placebo-controlled study found that melatonin supplementation (either alone or in conjunction with fluoxetine/Prozac) significantly reduced fibromyalgia symptoms.

Invasive / Surgery

Surgery

Some dentists report treating chronic fatigue and arthritic pain by removing infected bone in the third molar area.  These problems disappear in many patients after removing dental infections.

Laboratory Testing

Bacteria / Pathogen Testing by PCR

A Fatigue Illnesses and Pain Panel (Blood) can test for the presence of Mycoplasma fermentans, Mycoplasma pneumoniae, Mycoplasma penetrans, Chlamydia pneumoniae, Epstein Barr Virus (EBV), Cytomegalovirus (CMV) and Human Herpes Virus (HHV-6).

Mineral

MSM (Methyl Sulfonyl Methane)

According to Dr. Stanley Jacobs, MD, MSM can be helpful in most musculoskeletal pain and inflammation conditions, including fibromyalgia.

Magnesium

Fatigue is sometimes reduced with magnesium (and potassium) supplementation.  The many enzyme systems that require magnesium help restore normal energy levels.

Oxygen/Oxidative Therapies

Physical Medicine

Calming / Stretching Exercises

Studies from Texas Tech University found that the yoga postures helped increase circulation to the limbs and decreased physically related anxietyFMS sufferers frequently complain about decreased energy, but the Tech subjects reported that the yoga exercises actually increased energy levels.

Supplements

DMAE

DMAE increases the body's release of energy.

Vitamins

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