Figuring Out Fibromyalgia
Current Science and the Most Effective Treatments
By Ginevra Liptan, M.D.
A Book Review
by J. D. Adrian
195 pages including
Glossary and References
When looking for a book on fibromyalgia, I found numerous titles that seemed to treat the subject with specific treatments, that is, fibromyalgia and yoga, diet, and more. Those subjects are no doubt helpful, but I was searching for something more in-depth. I like to know where things come from and how it all works, especially when it come to health. Then I found this book. It is about the author’s personal experience with the illness, current knowledge of its origins and effective treatments, all supported by medical science. She takes much of the mystery out of this illness, while providing clinical proof of its existence and added support for appropriate treatments, supplementation, diet, and exercise. There is still some mystery in the causes of pain and how it is transmitted. This is certainly one of the most, if not the most, thorough examination of this little known illness in all its aspects.
Dr. Liptan developed fibromyalgia during her first year in medical school. However, it was not until she had gone through many years of pain treatments, colonics, fasting, diets, plus other experimental measures that she was ultimately diagnosed with fibromyalgia. This process took enormous amounts of time, money, and frustration before a diagnosis was made. Being in the medical profession gave her access to information and research that allowed her to thoroughly study this illness. The book outlines her years of personal exploration of fibromyalgia during and after medical school. She is currently medical director of the Frida Center for Fibromyalgia and an associate professor at Oregon Health and Science University. She treats many fibromyalgia patients in her own practice.
fibromyalgia awareness (Photo credit: veganjoy)
Fibromyalgia has a documented history of at least 200 years and has been known by several names. In the 19th century it was called chronic rheumatism or muscular rheumatism. In 1904 Sir William Gowers gave a memorable lecture at a London hospital and suggested that fibrositis, meaning muscle inflammation, was a more appropriate name. That name persisted until the 1970s, when after years of research, the medical community concluded that no research had been able to support the theory of muscle inflammation, and the name was changed to Fibromyalgia, a combination of Latin words for fiber, muscle, and pain.
This illness was for a long time considered a rheumatoid condition, but the joint inflammation and pain in rheumatoid disease does not exist in fibromyalgia. Dr. Liptan believes this illness is better classified under the specialties of sleep medicine, neurology, and endocrinology. It has no specialty of its own. She noted that recently a doctor told her that this is not an illness; it is a behavioral disorder. Many doctors have believed this idea for a long time, and this has contributed to the confusion among patients and their doctors. There is ongoing research into the causes of the pain, but clinical studies have confirmed pain in fibromyalgia, and it is no longer considered a “wastebasket of symptoms,” nor a syndrome, but a real illness. Other symptoms include bowel and urinary changes, depression, mental confusion, fatigue, and others.
Dr. Liptan states, “Fibromyalgia affects between 2-3 percent of the U.S. population, with similar numbers worldwide. That means between 6 and 10 million people in the United States have fibromyalgia; more than lupus, multiple sclerosis, and Parkinson’s disease combined.”
Fibromyalgia is a chain reaction as follows:
1. The hypothalamus, a gland deep in the brain, is stuck in a fight-or-flight stress response. This is a sympathetic activation, meaning the sympathetic nervous system is reacting through no control of the patient. It is completely separate from our consciousness and is an emergency survival mode that exists even when sleeping.
2. A negative effect of sleep pattern abnormalities is set up as a result of this stress response. All the while a fibromyalgia patient is sleeping, the brain is ready to defend the body against threat and manifests in the interruption of the sleep cycle, specifically the deep sleep that is necessary for the body’s repair and healing. The brain is always on guard and therefore will not complete the normal sleep cycle.
3. Lack of deep sleep results in low growth hormone levels and fatigue. Growth hormones are necessary for tissue development and growth throughout childhood, and continues its work for essential muscle health and tissue repair in adults.
Doctors still do not know how the connection between fight-or-flight response, sleep pattern abnormalities, and how low growth hormone levels interact to produce pain in fibromyalgia. Ongoing research continues to explore this and to learn how and why the flight-or-flight response begins and why it is stuck.
4. Abnormal pain processing of the spinal cord is the next step in the chain. Studies have shown that it takes very little pressure on the skin to produce a high level of pain in the fibromyalgia patient. A real-life study of skin pressure tests showed blood flow to the brain, and all pain processing areas in the brain “lit up” even with a light pressure, providing proof that fibromyalgia pain exists. Additionally, the brain and spinal cord in these patients are hyper-sensitive to pain, indicating that the spinal cord is misinterpreting pain signals. This may explain why temperature extremes, noises, and other stimuli are exaggerated and why the pain is so debilitating for the fibromyalgia patient.
Fascia is the source of muscle pain.
illness (Photo credit: cambiodefractal)
The fascia is a gel-like substance that wraps around the muscles. As it tapers off, it narrows and hardens to become tendon and attaches to the bone. This is a simple explanation but sufficient for our purpose in understanding the position of the fascia. Doctors have found that there may be direct nerve linkages from the fight-or-flight nervous system to the fascia, and this may lead to excessive tissue damage. At the same time, the sympathetic nervous system activation causes increased fascial tightness. However, there are two major factors in fibromyalgia that inhibit tissue repair: lack of adequate deep sleep, and the resulting lack of growth hormone essential for healing and tissue repair.
This leads us to #2 stage of the chain listed above. The chapter on improving sleep shows two charts, one on fibromyalgia sleep and another on normal sleep. The normal sleep chart shows that deep sleep comprises 20% of the sleep cycle. The fibromyalgia sleep chart shows deep sleep is only 1% of total sleep time. It is not quantity of sleep that matters, but the quality of sleep. Both sleep cycles may last 6 to 8 hours, but the fibromyalgia patient awakens still fatigued, with “Fibro-fog” and pain. “Fibro sleep is light, choppy, and lacking the normal prolong periods of deep sleep,” according to the author.
According to Dr. Steven Berney, chief of rheumatology at Temple University: “All treatments are geared at helping people sleep better. If we can improve their sleep, patients will get better.” Dr. Liptan suggests the following to help your sleep hygiene. You have no doubt heard many of them before.
- Reduce caffeine, and have no caffeine after noon.
- Do not smoke within six hours before bedtime.
- Do not drink alcohol within six hours before bedtime.
- Do not have a heavy meal just before bedtime.
- Do not do any strenuous exercise within four hours of bedtime.
- Body rhythms: keep the same patters of sleep. Go to bed at the same time and get up at the same time every day. Keep the same schedule seven days a week.
- Do not sleep or nap during the day, no matter how tired you are.
- The bedroom should be a quiet, relaxing place to sleep. Do not use the bedroom for non-sleep activities such as work or eating.
Most sedative sleep medications do not change the abnormal sleep patterns seen in fibromyalgia, nor improve sleep quality. Remember it is quality, not quantity of sleep we are striving for. Two medications have been found to slightly increase the amount of deep sleep, Lyrica and Neurontin; and there is sodium oxybate, a liquid that must be taken in two doses four hours apart. It forces the flight-or-flight system to shut down, allowing for deep sleep. In one study, it was found the patients experienced much less pain and fatigue. It does have some potential for addiction, and at this time, sodium oxybate has not been approved for fibromyalgia patients.
Quoting directly from the book: “The only analgesic (pain killer) that has evidence of effectiveness in fibromyalgia is tramadol (Ultram). This is a unique medication that acts partly like an opiate pain-killer but also increases levels of serotonin and norepinephrine, which increases the brain’s ability to filter out pain signals.” She outlines important precautions to be considered with this medication.
One popular book on the subject of fibromyalgia recommends Guaifenesin, an over-the-counter expectorant, the theory being by removing the irritating calcium phosphate from tissues, it will relieve pain. However, a 12-month study found no evidence to support this theory.
Dr. Liptan discusses other alternative treatments including manual therapy (myofascial release and Rolfing); a chapter on chronic fatigue syndrome; and an extensive review of pain medications.
Personal Comments and Conclusion:
This book is ideally suited to both the layperson and the medical community, and that is a good thing due to the lack of good information for both groups. However, I am particularly eager to add to the knowledge of patients for their own empowerment. Patients can be encouraged by several things:
1. You now have proof in your hands that fibromyalgia is an illness, and you no longer must listen to people who call it a wastebasket of symptoms or disbelieve it altogether.
2. You now have knowledge, and knowledge is power. Use these to promote your own wellness and educate your doctors. They can be nothing by pleased to find a book and a blog that will enlighten them in this debilitating illness.
3. Dr. Liptan has been explicit in saying that there is still much to learn, that there are no perfect answers yet, and treatments can vary among patients. She has also said that you need to work with your doctor in any treatment plan. That said, she has given us all suggestions on medications, diet, and exercise that we can use every day to begin feeling better. They are:
a. Diet should be a highly diverse whole diet as much as possible. By changing out your food items every week or two, you can eliminate possible allergens that stimulate your immune system. She recommends having allergy testing, but if that is prohibitive, the diversity method may work well in controlling allergens.
b. In addition to the warmup and stretching exercise program in the book (which I cannot show you), you must get some exercise every day. This will stretch out your muscles, increase your overall circulation, and assist in the healing process. Try walking, playing ball with your kids, or gardening, even for just a few minutes a day. If you have access to a warm water pool, take advantage of it often. Warm water exercise is the best healing exercise you can get. In my experience, the YMCA has good pools, and they offer graduated fees according to one’s income. Everyone can have access to the Y.
c. Although there is no scientific evidence that a particular supplemental regimen will help the patient, the author recommends B-complex and vitamin D. “All B vitamins are important for nervous system health, but B6, B12, and folate have some unique and vital functions in the body,” and in particular “the production and maintenance of the protective myelin sheath around nerves.”
d. Dr. Liptan recommends between 2,000 and 5,000 IU of vitamin D daily. This vitamin is important to immune and nervous system function as well as many others.
Naturally, the book outlines every issue in greater detail than I have and also talks about many functions and scientific evidence that I cannot include in this review. Nevertheless, armed with this amount of knowledge and new-found confidence, along with your doctor and continued research, fibromyalgia patients can learn to live a better life.
Fibromyalgia Awareness (Photo credit: Kindreds Page)