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Protocols: Recommended Self-Care for Chronic Fatigue Syndrome, Fibromyalgia and Post-Infectious Fatigue Syndrome
Although Chronic Fatigue Syndrome (CES), Fibromyalgia Syndrome (ES) and Post-Infectious Fatigue Syndrome (PIFS) are far better understood now than they were in the late 1980s when our office first conducted a CES research study was conducted we have still not arrived at a definitive treatment regime. Nonetheless, there are a variety of treatment options which have been explored in the scientific literature and which seem to have been helpful for some individuals. The best news is that we now know that CES and ES are generally self-limiting and that it is likely that a given individual will recover within 5 years of onset of the syndrome.
Below are some of the more important theoretical and research findings which anyone with CES or ES should be aware of Although CES and ES are distinct in many ways, we have grouped them together in this paper because many of the self-care recommendations apply as easily to one as the other. We have additional information available specific to Fibromyalgia upon request.
Chronic Fatigue Syndrome Epidemiology
The plethora of names and the frequency of descriptions in the medical and lay press are evidence of the confusion about Chronic Fatigue Syndrome, Fibromyalgia and Post Viral Fatigue Syndrome (PVFS). There can be no doubt, however, that one or more syndromes of chronic fatigue certainly do exist, and the personal testimonies of some of the sufferers highlight how painful and disabling it can be. There can be few conditions with such a varied and extensive nomenclature, but through the confusion can be discerned two distinct groupings: the epidemic cases (including epidemic neurornyaesthenia, Adelaide epidemic, Royal Free disease, Iceland disease, Los Angeles flu, Lake Tahoe disease) and the sporadic cases (including myalgic encephalomyelitis (ME), fibrositis myalgia, Yuppie' flu, idiopathic chronic fatigue syndrome, Epstein Barr disease/chronic infectious mononucleosis). In addition to their historical and epidemiological distinctions, there are a number of significant differences in the clinical features which they present. Estimates of its yearly incidence range from 140 cases in 6 months from a general practice population for 10,000 (annual rate = 2,800/100,000) to a hospital estimate of an incidence of 3-5 per 100,000. The total number of such cases in the UK is not known, but reports of the condition to specialist centers and private health insurance companies are increasing rapidly and the ME Association estimates the overall prevalence in the UK at around 150,000 cases. Most studies have shown a strikingly consistent predominance of females compared with males of around 2:1 and the large majority of cases are said to occur between the ages of 18 and 60 (the mean age in most series is around 35 years). There is a common perception that the disorder predominantly affects individuals from the middle socio-economic classes and of professional occupation, hence the name 'Yuppie flu' coined, somewhat uncharitably, by the press. In the great majority of cases, there are no abnormalities on clinical examination and routine laboratory testing. Patients almost always report having been quite well before the onset of the condition, and usually relate the start of the illness to a non-specific 'viral' infection, hence the term 'postviral fatigue syndrome.' A number or organisms, including Candida and molds have been implicated in the causation of the condition; in the UK, interest has mostly centered on the enteroviruses and in particular the Coxsackie viruses, while in the USA the focus of attention has been primarily the Epstein-Barr virus (EBY). Those studies which have examined psychiatric status reveal that between 50-80% fulfill operational criteria for psychiatric disorder. The natural history appears to be of a persistent condition with a generally poor prognosis: 'Most of the cases do not improve, give up their work and become permanent invalids.'
Chronic Fatigue Syndrome
The psychosocial characteristics that appear to differentiate patients who are chronically fatigued from those with Chronic Fatigue Syndrome (CFS) are: Symptoms of Major Depression (which typically reduces immune system functioning), a higher degree of stressful life change events in the past year, lower levels of physical activity, and social introversion. When some individuals with high levels of general fatigue are infected by viruses and/or have many life stresses, their fatigue, physical symptoms, and depressive moods become severe. A chronic state of this condition can lead to CFS. Since viral infections can alter neurotransmitter and/or neuroendocrine regulation it has been hypothesized that CFS may result from a mild central adrenal insufficiency secondary to either a deficiency of CR1-I or some other central stimulus to the pituitary-adrenal axis triggered by a viral illness in an already fatigued immune system. Laboratory findings with CFS patients include reduced NK cell activity, reduced numbers of CD 16+ and CD56+ cells, significantly reduced basal evening glucocorticoid levels, (glucocorticoid insufficiency appears to be continual), hypofunctioning of hypothalamic CRH neurons and low 24-hour urinary free cortisol excretion with elevated basal evening ACTH concentrations.
There are several theories, each with their own research evidence, to explain Fibromyalgia Syndrome. Researchers will probably find that more than one of these explanations combine together to create the syndrome. In no particular order they are: Serotonin deficiency; Cortisol deficiency resulting in and excess of cytokines which are immune system chemicals that fight disease, but cause pain in muscle tissue; Pituitary growth hormone (GH) deficiency and, or serotonin deficiency causing disturbed Stage 4 Delta sleep and resulting in inability of body to repair microscopic muscle tears; Serotonin deficiency resulting in increase of pain signals to brain may combine with overabundance of pain transmitting substance P; Phosphate buildup in muscle tissue. Individual may have genetic predisposition and then encounter a triggering event such as physical trauma, or chemical exposure.
By general agreement the definition of CFS and FS is a diagnosis of exclusion. Indeed, one of the universally accepted criteria is the absence of normal results on routine laboratory testing. Although the hunt is on to identify a biological marker (and some claims have been made to have found one), most doctors and sufferers alike would agree that at present no such marker exists. In its absence, a precise case definition together with the use of reliable, valid and reproducible measures is essential in order to ensure that different studies include comparable patients.
Chronic fatigue syndrome (CFS)
- Characterized by fatigue as the principle symptom
- The fatigue is severe, disabling, and affects physical and mental functioning
- The symptom of fatigue should have been present for a minimum of 6 months during which time it was present for at least 50% of the time
- Four or more of the following symptoms are concurrently present: impaired memory and concentration, sore throat, tender cervical or auxiliary lymph nodes, muscle pain, multi-joint pain, new headaches, unrefreshing sleep, post-exertion malaise, depressed mood.
- Specific points (18) of tenderness or pain
- Two or more of the following symptoms are concurrently present: impaired memory and concentration, muscle pain, multi-joint pain, new headaches, unrefreshing sleep, post-exertion malaise, depressed mood.
Post-infectious fatigue syndrome (PIES)
- There is definite evidence of infection at onset or presentation
- The infection has been corroborated by laboratory evidence
- The syndrome is present for a minimum of 6 months after the onset of the infection
Chronic Epstein-Barr virus (EBV)
- Antibody tests for EBV are of no value in diagnosing the syndrome.
- Flu-like illness from which you cannot recover.
- Overwhelming fatigue, lack of energy
- Severe disturbances of sleep and memory
- Unusual sensations, including tingling in parts of the body or the feeling of a motor racing inside of them.
- Sore throats, fevers, and swollen glands
We have found the following types of self-care activities to be essential for fatigue and myalgia recovery. Your therapist can give you more detailed information and suggestions in each category. Self-care allows your body to mobilize its healing resources to resolve the crisis.
CHRONIC FATIGUE SYNDROME TREATMENT OPTIONS
- Gingko Biloba - cognitive problems
- B-100 vitamin complex
- American Ginseng - adaptagen
- Follow and antioxidant plan including Coenzyme Q10 and Noni juice supplementation
- Anti-depressant therapy including use of hypericum perforatum and ginkgo biloba
- Aerobic exercise and weight training
- Avoidance of nonorganic environmental chemicals
- Contrast showers (alternating hot and cold, 1 time daily)
- Malic acid + Calcium + Magnesium = healthy energy metabolization in muscle cells
- Sleep hygiene leading to robust and sufficient sleep
- Relaxation response training
- Breathing exercises
- Communication and boundary-setting skills
- Educational and career planning
- Low-protein, low-fat, high-carbohydrate diet
- Antioxidant vitamin formula plus a B-100 B-complex supplement
- Astra-8, a mixture of Astragalus with seven other Chinese herbs
- Avoid symptom-reinforcing support groups
- Establish social supports
- Chronic Fatigue Syndrome. The Hidden Epidemic, by Jesse A. StoW MD & Charles R. Pellegrino, PhD
- Oxygen therapy
- Therapy with NADA:
- Research subjects were given 10 mg of nicotinamide adenine dinucleotide (NADH) in it's stabilized, oral absorbable form NADA (brand name Enada). Nicotinamide adenine dinucleotide is known to trigger energy production through ATP generation which may for the basis for it's potential effects. No adverse effects were reported. 31% of patients responded favorably to NADH compared to 8% for the placebo group. (Forsyth, et al. Therapeutic effects to oral NADH on the symptoms of patients with chronic fatigue syndrome. Ann Allergy Asthma Immunol. 1999;82:185-191.)
- Therapy with essential fatty acids (EFAs):
Eight capsules per day of the following essential fatty acids were administered to 63 adults resulting in a 74% improvement in CFS symptoms over a one month period.
- 36 mg gamma-linolenic acid (GLA)
- 17 mg of eicosapentaenoic acid (EPA)
- 11 mg of docosahexaenoic acid (DHA)
- 255 mg of linoleic acid
- 10 IU of vitamin E
The EFAs were given in research setting as capsules of "Primrosa" (or "Efamol Marine"): this is a mixture of Epogam and concentrated fish oil. Epogam itself consists of oil from seeds of evening primrose, Oenothera spp, the strains having been selected to yield oil of constant quality and composition. If this specific preparation is not available an alternative can be found by consulting your health food store proprietor. The patients took eight capsules a day in four divided doses. The effect of high doses of essential fatty acids on symptoms postviral fatigue syndrome was marked. At one month 74% of patients on active treatment and 23% on placebo assessed themselves as improved over baseline. No adverse events were reported. (Behan P, Behan W and Horrobin D. Effect of high doses of essential fatty acids on the postviral fatigue syndrome Acta Neurol Scand 1990;82:209-2 16.)
FIBROMYALGIA TREATMENT OPTIONS
- Acupuncture: for pain relief and neuromuscular reconditioning.
- Allergy Treatment: both preventive and situational.
- Analgesic and Anti-inflammatory Medication: Ibuprofen, Indocin, NSATDs, Codeine.
- Biofeedback/Neurofeedback: (Reducing pain, stimulating immune system and neurochemical balance, normalizing brain area targeted through brain imaging.)
- Dietary and Supplements: 5-Hydroxitryptophane may be helpful in establishing normal sleep patterns and raising pain threshold; Barley Green can act as an anti-inflammatory agent and can be sprinkled on salad, or taken in water (1 or 2 tablespoons). Malic + Calcium + Magnesium supplements as directed on label promote healthy energy metabolization in muscle cells. Malic acid (1200-2400 mg.), which plays an important role in sugar metabolism, has been helpful to many persons with ESS. Proteolytic enzymes, or Infla-Zyme Forte (American Biologists Co.) can reduce inflammation and improves protein absorption needed for tissue repair. Free-form amino acid complex (Use as directed can supply protein to muscles for repair and rebuilding. A carbohydrate restriction diet is also helpful for some FSS sufferers. Eating more frequently and drinking a large amount of water helps provide a steady supply of protein muscle tissues and to flush out toxins. Avoid wheat, brewers yeast, white potatoes, saturated fats, red meat, sugar, fried foods, tomatoes, green peppers, eggplant, and. alcohol.
- Environment: Some researchers believe that ESS is triggered, caused, or exacerbated by chemical sensitivities. Avoidance on non-organic chemicals in the environment is recommended.
- Exercise: Gentle, very low-impact aerobics is the second most important intervention for most people with FSS. Start slow (5 minutes per day) and build to tolerance (20-30 minutes per day). Positive benefits cannot be expected until tolerance level is reached. Yoga (esp. bridge, cobra, knee squeeze, spine twist postures), tai chi, or basic stretching exercise improves muscle fitness, reduces muscle pain and restores neurochemical balance.
- Heat (Topical): Some find symptomatic relief from infrared light heat, or hot whirlpools which can increase blood flow to muscle tissue. Others report deep heat increases inflammation and pain - probably due to overheating which increases metabolism and consumption of oxygen beyond the ability to restore oxygen to the muscle being heated. Some ESS sufferers find contrast showers (alternating hot and cool) are helpful in stimulating blood flow to muscle tissue.
- Medication (Prescription Only): Serotonin levels can be increased through use of serotonin reuptake inhibitors (SRls) such as Prozac and Wellbutrin, but these medications are primarily effective in giving relief from depression associated with FSS. Flexeril, Elavil, Sinequan Doxepine, Desryil and Amitriptyline can be used to establish regular sleep patterns (Amitriptyline has more side effects) and can also have an antidepressant effect. Uricosurics, specifically Guaifenesin (1800 mg. Per day) can assist muscles in flushing out toxins. (The positive action of Guaifensin can be blocked by use of plant extracts, or salicylates found in cosmetics and lotions, herbal medications, Myoflex and Ben Gay). Inflammation can be treated with non-steroidal anti-inflammatory drugs (NSAIDs), or Azulphadine which is also helpful for irritable bowel syndrome. Some have found relief through thyroid hormone. Amantadine and medications designed for high blood pressure can be used to increase blood flow. An underactive thyroid gland is associated with muscular stiffness, fatigue, and depression. Use of benzodiazepines is discouraged as they can block Stage 4 deep sleep. Medications should always be started at lowest possible dose and increased every few days to maximum relief of symptoms without unacceptable side effects.
- Oxygen Therapy: Breathing exercises and aerobic exercise can restore normal oxygenation to muscle tissues. Also, dietary supplementation with Coenzyme QIO (75 mg. Daily), Dimethylglcine (DMG) (50 mg. 3 times daily), or Ginkgo biloba (take as directed) can improve oxygenation of tissues. Bottled oxygen can be utilized under medical supervision. Transfusions of red blood cells can be used in severe FSS situations.
- Physical Therapy: Crainosacral, Myofacial Release, Rolfing and traditional massage therapy can restore neuro-muscular pathways and muscle function. Posture and movement training (Feldenkris) can also be helpful.
- Relaxation Response Training: Guided imagery, autogenics, progressive muscle relaxation and other techniques (with, or without biofeedback) can mobilize natural healing responses.
- Rest: Next to exercise and proper sleep patterns probably the most helpful self-help treatment. Rest restores general wellness and allows body systems to reset themselves.
- Sleep Hygiene: A primary causative factor in Fibromyalgia syndrome appears to be loss of Stage 4 deep sleep (which restores muscle function) due to an "alpha-EEG anomaly". Intrusive dream imagery, restless leg syndrome, nocturnal myoclonis, sleep apnea, and other sleep disorders can disturb delta level sleep. Reestablishing normal sleep patterns is the most important treatment for FSS. No More Sleepness Nights (Hauri and Linde, 1990) and Insomnia (Morin) are two of the best self-help texts in this area. Melonatonin is a hormone naturally secreted by the pineal gland and can be a very effective alternative to synthetic medications in treating sleep disorders. 5-Hydroxytryptophane can increase serotonin levels in the brain and reestablish normal sleep patterns.
- Topical Pain Relievers: Trigger Point Injections with lidocaine, or alternate medication. Topical application of cayenne (capsicum) powder mixed with wintergreen oil can help relieve muscle pain by inhibiting release of neurotransmitters responsible for pain transmission.
- Fibromyalgia and Chronic MPS: A Survival Manual (Starlanyl and Copelan)
Warnings: The information above is provided for educational purposes and may not be construed as a medical prescription or as a substitute for the advice of your physician. Do not use these products without first consulting your physician especially if you are pregnant or lactating. Be advised that some herbs and dietary supplements can cause severe allergic reactions in some individuals and may also have an adverse result in conjunction with other medications, or treatments. You should regularly consult your physician in matters regarding your health and particularly in respect to symptoms and conditions which may require diagnosis or medical attention. Reevaluate use of any product after 6 months.
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