Every person with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME) and/or fibromyalgia syndrome (FMS) has a unique presentation of these conditions with various complications and sets of symptoms. There is no one treatment that can “cure” these syndromes or that is helpful to everyone however a combined approach of therapies can lead to an improved quality of life. I have listed below things that have been beneficial for myself and others.
1. Diet and Chemical Exposure
Impaired detoxification is common to chronic fatigue and fibromyalgia sufferers. Avoidance of stimulants, depressants, pharmaceutical drugs and toxic chemicals can make a big difference in feeling better. This includes alcohol, caffeine, sugar, pain relievers and additives in processed food. Unfortunately many physicians prescribe drugs for pain, depression and sleep, which become less effective with time and in the long run make a patient worse. Some CFS/FMS have a particular sensitivity to fluoride, which is discussed in the post "Fluoride Poisonin g" fibrofriends.typepad.com/fibro_friends/2008/07/fluoride-poison.html. Others are sensitive to environmental stresses such as living is close proximity to a cellular tower. The optimal diet is one that is high in protein and minimally processed: organic meats, fish, eggs and dairy products, vegetables, nuts, whole grains and fruit. It is also important to consume salt and to drink plenty of water.
Breathing is the underlying force of life and many people with chronic fatigue and fibromyalgia have impaired or restricted breathing contributing to poor health and pain. People with CFS/FMS are often unaware that they are surviving on less air, which does not show up in an oxygen saturation test because their bodies compensate for this with low blood pressure. This is a cause of neurally mediated hypotension, a blood pressure abnormality common in Chronic Fatigue patients. Oral Systemic Balance is a treatment developed by a TMJ dentist named Farrand Robson that employs oral appliances to help patients breathe better and restore balance to the nervous system. It resulted in significant improvement in my own health and provided the foundation for my recovery which I discuss in my post “Oral Systemic Balance ” fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html . The treatment is time consuming and expensive however I believe that it addresses a key sources of stress for those suffering from Chr onic Fatigue and Fibromyalgia Syndromes. For more information call TMJ Diagnostics at (800)977-1945.
Dr. Majid Ali, a leader in the field of Integrative Medicine with an impressive list of credentials believes that all symptoms of fibromyalgia and chronic fatigue syndromes are caused by cellular oxygen deprivation and metabolism. His website that discusses this theory is: www.majidali.com/oygenand.htm
The website www.breathing.com / has helpful information on holistic breathing development research, education and self-help programs developed by “The Optimal Breathing Coach” Mike White. I recommend ordering the Fundamentals of Breathing Development Video and Breathing Kit, which offers an effective program of breathing exercises.
Chronic Fatigue and Fibromyalgia Syndromes are conditions of neurological exhaustion and physical stress that result in dysregulation of the Central Nervous System. Dr. Len Ochs, a pioneer in the biofeedback field developed a unique form of EEG feedback or neurofeedback called Low Energy Neurofeedback System (LENS) that has helped many people with CFS/FMS. The system operates entirely different from traditional EEG or neurofeedback training. Treatment involves very short (a few seconds per session) feedback of the dominant frequency the brain is producing at an offset. This results in the brain jumping out of its existing patterns and breaking up dysfunction. The therapy works best for those who have resolved underlying physical stressors that led to their condition i.e. obstructive breathing and infections. For more information read the book "The Healing Power of Neurofeedback" by Stephen Larsen and go towww.ochslabs.com/.
4. Thyroid Function
Most chronic fatigue and fibromyalgia patients suffer from symptoms of hypothyroidism, which include low body temperature (below 98 degrees), fatigue and constipation, even though their thyroid blood tests are normal and/or they are taking thyroid replacement. Dr. Denis Wilson discovered that this condition which is called “Wilson’s Thyroid Syndrome”, "Wilson's Low Body Temperature Syndrome" or “Wilson’s Syndrome” can be reversed by taking for a period of time the active thyroid hormone T3. Returning my body’s temperature and thyroid function to normal was one of the big breakthroughs of my healing and I think it is an issue for many CFS/FMS patients. You can read more about this at www.wilsonssyndrome.com and in my post “Thyroid Function"fibrofriends.typepad.com/fibro_friends/2009/03/thyroid-function.html.
5. Biofeedback Self-Regulation Skills
Biofeedback is the process of becoming aware of various physiological functions using instruments that provide information on these systems and through practice learning to manipulate them at will. I have discovered two biofeedback modalities, Surface EMG and Hand-Warming, to be particularly beneficial in reducing the symptoms of an agitated sympathetic nervous system. Both modalities use instruments that are inexpensive and can be practiced on one's own.
An electromyograph (EMG) is an instrument that uses surface electrodes to detect muscle contraction. EMG biofeedback employs this instrument to measure the surface electromyogram (SEMG) using one or more active electrodes that are placed over a target muscle and actively record the muscle tone in microvolts. Paying attention to this feedback one can manipulate and decrease agitated muscle contractions. The therapy is particular helpful for fibromyalgia, which often manifests itself as a condition of hypertoned muscles that over contract. By placing electrodes on the tender or trigger points one can learn to retrain the muscles to relax. Surface EMG is also helpful for tension headaches, repetitive strain injuries and general calming of the nervous system. An inexpensive home unit can be purchased from Win Health www.win-health.com/neurotrac_simplex.html.
Hand-Warming is a self-regulation skill that employs a feedback thermometer that detects skin temperature with a sensor that is attached to a finger. Paying attention to this feedback one can manipulate circulation to the extremities of the body which are often shunted in response to stress. The skill is helpful for preventing migraine headaches, arresting night sweats and general calming of the nervous system. An inexpensive Indoor/Outdoor thermometer can be purchased at a hardware or electronics store such as Radio Shack for this purpose using First Aid tape to afix the "outdoor" temperature sensor to one's finger. To read about my personal experience treating night sweats with hand-warming go to my "Waiting For Sleep" post fibrofriends.typepad.com/fibro_friends/2009/10/waitin.
Glutathione is the master antioxidant found in every cell of the body. It is responsible for transporting proteins between cells, detoxifying chemicals and environmental pollutants, activating the immune system and regenerating a variety of other antioxidants. Chronic Fatigue and Fibromyalgia patients have low levels of glutathione and this causes some of the symptoms associated with the disorder including brain fog. Taking glutathione orally is ineffective because it is destroyed by stomach acid. Some physicians treat chronically ill patients with glutathione injections or include glutathione in a intravenous solution with vitamins and minerals. These therapies are expensive and their effects immediate and short term. T here are supplements that can increase the production of glutathione including vitamin C, alpha lipoic acid, milk thistle and N-acetyl cysteine. Dr. Robert Keller, a doctor who treated many chronic fatigue and fibromyalgia patients developed after 10 years of research a glutathione optimizer, which is a patented formula of supplements called MAXGXL. For more information go to: www.maxgxl.com. An alternative method is using a nonotechnology homeopathic patch that stimulates acupuncture points to increase the production of glutathione. For more information go to:www.lifewave.com. To learn about my experience exploring the detoxification issue go to fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html.
To download interesting articles written by Rich Van Konynenburg, Ph.D.,an independent researcher about the role of glutathione depletion in Chronic Fatigue Syndrome" goto:www.aboutmecfs.org/Trt/TrtGSHIntro.aspxaboutmecfs.org/Trt/TrtGSHIntro.aspx.
7. Protein Deficiency
Fibromyalgia patients have chronically low levels of amino acids and are deficient in systemic protein, which provide the materials to maintain, protect and repair body functions. This is most likely due to inflammation in the gastrointestinal tract that makes it difficult to completely digest protein, carbohydrates and fats. A chiropractor named Dr. Brice Vickery has studied this area extensively and developed a patented formula of amino acids called “Platinum Plus Essential Amino Acids” that is beneficial in addressing protein deficiency and improves many of the symptoms of fibromyalgia. To learn more about this read my post “Protein Deficiency” fibrofriends.typepad.com/fibro_friends/2009/01/protein-deficiency-fibromyalgia.h. You can order the amino acids at:www.supernutrient.com.
Adrenal exhaustion is common to all CFS/FMS due to the enormous stress of living with these conditions. Mainstream endocrinologists do not diagnose or treat adrenal fatigue because there is nothing fundamentally wrong with the adrenal glands i.e. cancer or autoimmune disease. Holistic and naturopathic physicians diagnose this condition through saliva tests and treat with small amount of hydrocortisol or adrenal cortical extracts for a few months to give the adrenal glands a chance to recover. Taking hydrocortisol has been helpful for those suffering from severe gastrointestinal issues as well. I have benefited from this therapy for short periods of time and discuss in my post "Adrenal Exhaustion"fibrofriends.typepad.com/fibro_friends/2008/10/adrenal-fatigue.html.
9. Infections & Complicating Conditions
CFS/FMS patients are prone to a variety of infections and conditions including yeast overgrowth or candida, intestinal parasites, heavy metal toxicity and mercury poisoning, viral, retroviral and mycoplasma infections, and Lyme disease. This is due to lack of oxygen, inflammation in the gastrointestinal tract, depletion of glutathione and stress. These conditions can be treated by a good holistic physician using herbs, short term courses of antibiotics and probiotics. An interesting website that discusses research on chronic infections is www.immed.org.
10. Atlas Profilax
Atlas Profilax is a physical therapy developed in Switzerland by Rene-Claudius Shumperli, which employs a vibrating instrument that massages the sub-occipital muscles of the neck. This results in a freeing and relocating the first cervical vertebra or atlas. The treatment is gentle, safe and usually permanent typically requiring only one session. Cost for the treatment and follow-ups is $250. Although the treatment was not helpful for me, I know of a few people who got significant improvement in fibromyalgia symptoms from it. To read about their experiences check out the post "Atlas Profilax" fibrofriends.typepad.com/fibro_friends/2008/10/atlas-profilax.html . For more information on the procedure and to find a practitioner goto:www.atlasprofilax.ch/.
11. Lymphatic Dysfunction
The lymphatic system is a specialized component of the circulatory system which functions to remove excess fluids from body tissues, absorb fatty acids and produce immune cells. CFS/FMS patients have a sluggish or restricted flow of lymph resulting in mild edema. Some people have experienced a decrease of symptoms by taking decongestants and expectorants such as guaifenesin. I personally use an electronic instrument called Lymph Star Pro that facilitates lymph drainage via emissions of specific light and sound frequencies. I think this is a preferable alternative to taking drugs and that it has been mildly beneficial. The device is manufactured by Arcturus Star Products www.arcturusstar.com.
12. Gastrointestinal Problems
Many people with CFS/FMS suffer from gastrointestinal problems including constipation, loose stools, bloating, and flatulence. There are multiple causes of these symptoms including intestinal parasites that can be treated with appropriate antibiotics, low production of stomach acid which can improve by taking hydrochloric acid capsules after meals and low production of digestive enzymes by the pancreas which can be treated by taking digestive enzymes. An excellent laboratory used primarily by naturopathic or holistic physicians for diagnosing these disorders is Diagnos-Techs, Inc in Tukwila, WA. Some have reported good results in resolving gastrointestional problems from taking the nutritional supplement Mila, a chia seed that is high in fiber, antioxidants and essential fatty acids.Seewww.lifemax.net. A good magnesium supplement that relieves constipation is "Homozon".
13. Physical Therapies
I have explored a variety of physical modalities extensively in my search for better health including many kinds of acupuncture, massage, Rolfing, cranial sacral work, Tragger, chiropractic, Reiki, etc. I have found two forms of physical therapy to be particularly beneficial: Feldenkrais and Bowen Work. Both these therapies are very gentle and noninvasive which is important for CFS/FMS patients who can overreact to more aggressive treatments. Feldenkrais addresses patterns of movement and posture that can cause pain. Its practitioners are well educated and can help individuals attain the most efficient and stress free way to move, stand and sit as well as an overall awareness of one’s body. For more information and to locate a practitioner go to:www.feldenkrais.com. Bowen Work stimulates healing through subtle moves that release tension in specific areas of the body and restore physical balance. For more information and to locate a practitioner go to : firstname.lastname@example.org. Both therapies activate the sympathetic nervous system and are excellent adjuncts to healing.
Exercise is a tricky and sometimes impossible activity for persons with CFS/FMS depending on the severity of the condition. Overdoing it can result in a flare-up of symptoms and compound the exhaustive state. Mild exercise and movement such as walking, yoga and Tai Chi well within the limits of one's capacity for exertion however are beneficial.
14. Stress Management
The challenge of living with conditions that cause ongoing fatigue, pain and insomnia is huge. Persons with CFS/FMS are under incredible stress physically and therefore have a low tolerance for additional stress in their personal lives. They need to make good decisions whenever possible about relationships, work and lifestyle that that minimize personal stress. I have been very fortunate to have people in my life who are supportive and understanding, to not have to solely support myself financially and to have the resources to explore treatments. I have benefited from learning meditation, relaxation and biofeedback self regulation skills. I also have built into my schedule a half hour “nap” after lunch that has been a lifesaver.