A growing body of research has found abnormalities of the cardiovascular systems in persons with Chronic Fatigue Syndrome. These include a blood pressure regulation abnormality called neurally mediated hypotension (NMH) first discovered in a small study conducted by researchers at Johns Hopkins University in 1995; abnormal oscillating T-waves of the heart on 24 hour EKG Holter monitor demonstrating abnormal left ventricular myocardial function from a study headed by Dr. Martin Lerner reported in 1997; low levels of circulating blood volume and Red Blood Cell mass in a study initiated by Dr. David Streeten and Dr.David Bell in 1998; and low cardiac output assessed in a study using Impedance Cardiography headed by Dr. Arnold Peckerman in 2003. For more information on these and other studies on the cardiovascular abnormalities in CFS go to: http://www.name-us.org/ResearchPages/ResCirculatory.htm
The research suggests that insufficiency in circulation and heart function are significant problems for persons with Chronic Fatigue Syndrome, moreover they may be responsible for many of the symptoms of the disorder. Low circulating blood volume and fewer red blood cells results in reduced blood flow and oxygen to the skin, vital organs, muscles, and brain. One of the most enlightening articles for patients to read about cardiovascular issues in CFS is a transcript of a conversation with Dr. Paul Cheney, a leading CFS doctor and researcher called "The Heart of the Matter: CFS & Cardiac Issues". For the complete article go to: http://www.dfwcfids.org/medical/cheney/heart04.htm
Dr. Cheney describes a form of heart failure which he calls Compensated Idiopathic Cardiomyopathy that is characterized by low cardiac output correlating to a "Q" score measured by Impedance Cardiography. The degree of disability in persons with CFS corresponds to this score. Cheney maintains that the body will defend its blood pressure beyond anything else and in the case of low cardiac output it will sacrifice microcirculation to the tissues in a prioritized order. The first compromised area is microcirculation of the skin resulting in a poor ability to regulate body temperature and the development of compensatory hypothyroidism. The second area that the body will sacrifice is circulation to the muscles resulting in exercise intolerance and fibromyalgic pain. The third system affected is the liver/gut causing poor digestion and gastrointestinal problems. The fourth affected area is the brain causing cognitive issues such as brain fog. And the fifth area is the muscle of the heart itself resulting in mitral vale prolapse and chest pain. Persons with CFS rarely cross what Cheney calls the "Event Horizon" which affects the lungs and kidney and ultimately results in cardiac failure and death. He maintains this is because of the condition itself which protects the body by downregulating the production of energy.
There are a number of theories about the cause of low cardiac output in persons with CFS. One theory is that this is caused by mitochondrial failure from poor production or slow recycling of Adenosin-5'-triphosphate (ATP) the coenzyme that transports chemical energy within all the cells for the body. An alternate theory is that an infectious agent such as a virus or mycoplasma is attacking the heart. This theory is professed by Dr. Martin Lerner who describes CFS as a "persistent nonpermissive herpesvirus infection of the heart" and claims success treating patients with long term anti-viral drugs. For a detailed discussion of Dr. Lerner research and treatments go to: http://phoenixrising.me/interviews-3/learning-cfs-dr-lerner-on-his-longterm-antiviral-treatment-study-0510-by-cort-johnson . The role of heavy metals specifically mercury which is found in abnormally high levels in persons with Chronic Fatigue Syndrome patients is also suspected of playing a role in low cardiac low output. Some researchers including Dr. Cheney think that CFS and the resulting cardiovascular abnormalities are the result of a combination of factors: preordained genetics and environmental influences including infections, allergens, toxins, and heavy metals.
Recommended treatments for cardiovascular problems in persons with CFS include drinking lots of water and consuming more salt to help with symptoms of low blood volume; and taking nutritional supplements such as Coenzyme Q10, Acetyl L-carnitine, magnesium, Ribose, glutathione, fish oil, and B12 injections to help "feed" the mitochondria and boost cardiovascular function. Some physicians prescribe heavy metal detoxification programs.
My personal journey of managing and reversing the symptoms of Chronic Fatigue Syndrome has lead me down a path of discoveries of things that were not helpful and things that made me better. In retrospect I can see that I was always struggling to affect cardiovascular problems. I first became ill in 1973 at the age of 19. My condition remained undiagnosed for many years and I knew of no else with my particular set of symptoms. Initially I suffered from fatigue, headaches and eye strain. I discovered that avoiding stimulants and depressants such as alcohol, caffeine, and sugar was most important in managing my symptoms and combined with EMG biofeedback training on the muscles in my neck I eliminated my headaches. I also did a number of years of Feldenkrais training which helped improve my posture and educated my body to move more efficiently. For the first 28 years of my condition I was able to exercise in low impact activities such as walking, swimming and yoga and these things also helped me manage my condition.
I was diagnosed with Chronic Epstein Barr Virus in 1986 and by the 1990's it was clear to me that my condition was what then called Chronic Fatigue Immune Deficiency Syndrome. I always drank lots of water and liberally salted my food. I personally did not observe any benefits from taking the supplements listed above which I did for many years at the recommendation of various health practitioners. I also undertook a lengthy heavy metal detoxification program that did not result in significant improvements in my health. For more on that read my post "Detoxification". http://fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html
Beginning in the 1980's I began suffering from severe body heat at night that prevented me from sleeping. Various sleep medications and natural remedies were of no use but finally by chance I discovered a simple biofeedback technique called "hand warming" that helped. By observing a digital temperature display of a heat sensor strapped to my finger I learned to raise the surface temperature of my hands. When the temperature reached 95 degrees, a relaxation response occurred in the vascular system and my night sweats stopped. Although I had to repeat this exercise multiple times each night when I would awaken it allowed me to get adequate sleep. To read more about this and other biofeedback and neurofeedback therapies that were helpful for me go to my post "Biofeedback Therapies for CFS and FMS". http://fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html
In 2001 at the onset of menopause my health took a turn for the worse and began to affect my muscles so that I was no longer able to exercise or do any repetitive activities without developing fibromyalgia pain. Then in 2002 I experienced an episode of "Silent Thyroiditis" which led me down a long investigative path on the thyroid dysfunction associated with my condition. This culminated in a thyroidectomy and thyroid replacement in the form of compounded T3 according to the Wilson Syndrome protocol which eventually stabilized my thyroid function, permanently raised my body temperature to normal and eliminated a certain kind of fatigue which I had struggled with for over twenty-five years. Although a rather dramatic and involved way to manage the thyroid dysfunction in CFS it nonetheless worked. To read about this go to my post "Thyroid Function". http://fibrofriends.typepad.com/fibro_friends/2009/03/thyroid-function.html
The last area to be affected by my condition was my gut. This started around 2005 and manifested itself as indigestion, loose stools and bloating. Fortunately my condition never progressed to the point where it affected my brain because in 2007 I experienced a significant breakthrough in my health that stopped the progression of CFS. This happened when I started a therapy called Oral Systemic Balance. Developed by a TMJ dentist named Farrand Robson, the therapy employs oral appliances to help patients breathe better and restore balance to the nervous system. To learn more about my experience go to my post “Oral Systemic Balance” http://fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html
Today I no longer suffer from fatigue. While in the past I oscillated between feeling "wired" and "tired" now my energy is steady and balanced. Despite these improvements I am still unable to exercise or practice the piano regularly (I am a musician) without developing pain in my muscles. My digestion is better but not normal and my sleep although improved is still disturbed. I have come to the conclusion that I am still suffering from effects of low cardiac output which manifests itself as a kind of pressure or physical stress in various systems of my body. I manage my condition with a combination of strategies: wearing my oral appliance, maintaining a strict diet devoid of processed foods and all stimulants including sugar and fruit, doing surface temperature and EMG biofeedback training, taking lots of alternating hot and cold showers which helps with circulation, and avoiding strenuous physical activities. I also keep to a regular schedule which includes lying down for a short nap every afternoon and going to bed at 9:30pm.
Last fall I embarked on a series of Whole Body Cryotherapy sessions which was initially effective in improving my symptoms because it stimulated blood flow but eventually became ineffective when I reached a certain threshold. To learn more about this therapy go to my post "Whole Body Cryotherapy". http://fibrofriends.typepad.com/fibro_friends/whole-body-cryotherapy/ Wearing high tech sports compression garments also helped to a point but then made my gastrointestinal problems and sleep worse so I discontinued wearing them.
Recently I became aware that Dr. Farrand Robson has made significant advancements in Oral Systemic Balance since he started working with a heart ultrasound machine. Initially working with heart rate variability and then EKG as diagnostic tools Robson ascertained that the heart compensates for restrictions in the air passage. When his patients started wearing oral appliances he observed positive changes in the heart which corresponded to improvements in their health. Robson has since discovered that he can make an even greater impact on the health of his patients by making adjustments to the contours of the appliances while observing changes on the heart ultrasound.
I went to Dr. Robson's office several weeks ago for an evaluation of my heart function with an EKG. This was not the typical cardiologist test but more akin to what CFS researchers do. The test took about fifteen minutes. My heart was observed in various positions while wearing my appliance: sitting, lying and standing, and while breathing deeply, speaking and swallowing. Dr. Robson's assistant, a nurse who formerly worked for a cardiologist explained that the test showed considerable cardiac stress manifesting as flattened T waves and at times a very slow pulse (48 beats per minute). Based on these results she felt I was a good candidate for further OSB treatments. In the coming month I will be in treatment with Dr. Robson and his staff with a redesigned appliance and ultrasound testing. As always I remain cautiously optimistic that this next chapter of my health journey will produce positive results. Stay tuned for upcoming blog posts to see what happens!