I went in search of new things for Fibromyalgia and this is what I came up with! It is very long but if you will read it all you will have a much better view on Fibromyalgia and the causes and treatments.
Fibromyalgia: The Latest News
How to find relief from the pain that won't go away!
Twenty years ago, Julie Lydon of Norwood, Massachusetts, started to experience lower back pain. Soon she couldn't stand up straight, and her muscles stiffened when she sat too long. Her body throbbed, she was tired all the time. Doctors ran a battery of tests, looking for cancer, leukemia, anything. Finally, after 15 long years, Julie had a diagnosis: fibroyalgia.The chronic disorder, marked by unending pain and fatigue, affects up to 10 million Americans, the majority of whom are women. But many patients have a hard time getting diagnosed since the exact causes of fibromyalgia are unclear, there is no blood test available and symptoms can vary widely. As scientists continue to study this mysterious ailment, promising discoveries are being madr to help paitients with fibromyalgia better understand and manage thier condition.New Studies, New Discoveries
According to researchers, fibromyalgia does have a biological basis. A study done at the National Institutes of Health and Georgetown University found that fibromyalgia patients' brains respond differently to pain.Other findings could explain the intense pain that patients feel. Fibromyaglia patients have higher than normal levels of the neural hormone substance P. The hormonr, found in spinal fluid, sends pain signals after an injury. At the same time, people with fibromyalgia have lower levels of serotonin, a neurotransmitter that reduces pain.Other horomones may also be culprits. Those with fibromyalgia have lower levels of certain growth hormones, which help the body attain the deep, restorative sleep it needs. Fibromyalgia patients also secrete lower amounts of stress hormones, causing them to respond less affectively to stress. Therefore people with fibromyalgia tend to suffer depression at a higher level than most of the population.Studies suggest that genes may also play a role. "Now that we've started to map the human genome, research suggests that there may be twenty genes or more that could be responsible for fibromyalgia," says Kim Jones, Ph.D., R.N., assistant professor at the Oregon Health & Science University in Portland and a fibromyalgia researcher. "People with a greater number of potentially affected genes may require little or no environmental stimulation to turn on their fibromyalgia genes. Others may need more stimuli." Amoung the invironmental factors under investigation by the Arthritis Foundation are physical trauma, viral or bacterial infections and emotional distress.Drug Companies Look Ahead
The growing body of physical evidence has inspired pharmaceutical companies to explore new drugs to treat fibromyalgia,says Daniel Clauw, M.D., a professor of medicine at the University of Michigan and a fibromyalgia researcher who coauthored the NIH-Georgetown study. "There are at least three companies doing clinical trials to get drugs approved fo fibro," says Dr. Clauw. Like existing therapies (see "The Rx Factor," at end of article), the new drugs can relieve symptoms but won't cure the disease. "Because we don't know the cause, we are stuck treating the symptoms," says Daniel Rooks, Ph.D., director of the Be Well! Tanger Center for Health Management at Beth Israel Deaconess Medical Center in Boston.Diet Makes A Difference
Some researchers believe that people with Fibro should reduce their intake of certain foods. For instance, too much monosodium glutamate (MSG) (A preservative used to keep foods fresh longer, especially french fries to keep them from turning dark.) and aspeartame (Sweet & Low, as well as other artificial sweetners, found in all diet sodas) may aggravate pain. Excess calories could cause weight gain that, in turn, may worsen pain.Eating a balanced diet will help support the immune system, sats Leslie Bonci, R.D., a spokeswoman for the American Dietetic Association and director of sports nutrition at the University of Pittsburgh Medical Center.That means getting enough protein, essential fatty acids, antioxidants and vitamins A, C and E. Foods such as tuna, chicken, yogurt and peanut butter are good sources of protein. (I have found that if I have a flair coming on I will actually crave peanut butter and yogurt or milk shakes.) Fresh fruits and vegetables, dried fruits and frozen veggies are all good sources of antioxidants and vitamins A, C, and E. (It is best to stay away from canned veggies because most contain MSG, fresh or frozen I have found is best!) And essential fatty acids, such as omega-3s, are found in fatty fish, such as tuna and salmon, as well as in ground flaxseed. (You can also tack these in pill form as in vitamins, however make sure you get Nature Made or a Natural brand that has no addatives or you defeat the purpose.)The Age-Old Remedy: Exercise
Even though medication offers relief, experts say excercise is an essential treatment for fibromyalgia. "Exercise is a must," says Dr. Brooks. "There's nothing better for improving function and outlook." (I agree exercise is important to keep joints and muscles from freezing up, however doctor's don't realise most of us feel as if we just can not move. Even an arm feels like it weighs a ton. I have found that if before you try to get out of bed you will start with fingers and toes then try to stretch the other limbs, (Like the old saying I'd stretch a mile if I didn't have to walk back,) rings very true here for often the stretching feels wonderful. The key is to start out slow. Then you will find you are not as stiff when you do get up! You can do the same after sitting for long periods.)Andrea Whitaker, 46, of Cambridge, Massachusetts, agrees. "The worst thing I can do is not move," says Andrea, who was diagnosed with fibro six years ago. "Staying immoble is a definite trigger. My muscles just freeze up."According to Don L. Goldenberg, M.D., medical advisor for the Arthritis Foundation, a patient should focus most on cardiovascular workouts such as walking or water aerobics. (I have found for me with my advanced fibro water arobics are best for me because you are weightless in the water and limbs don't feel so heavy.) Besides improving general fitness, cardiovascular exerccise improves immunity and elevates mood, he says.Stretching is also important. The intense pain of the diease tightens muscles, causing them to shorten and lose range of motion. "Stretching is critical for preventing muscle injury," says Robert Bennett, M.D., professor of medicine at the Oregon Health & Science University and a longtime researcher in the field. "Ideally, you should gently stretch each muscle group twice a day for about four to five minutes."Strength training also plays a role. A study by Drs. Bennett and Jones found that specially tailored twice-weekly strength-training classes paid off even more than flexibility training did. Jane Walpole has known this for years. In 1989, the 50-year-old from Tigard, Oregon, developed fibromyalgia so severe she abandoned her career as a dentist and gave up kayaking and skiing. Several years later, while caring for her premature niece, Jane found herself constantly lifting the 4 1/2-pound infant. It was painful at first, but she persevered. As the baby gained weight, Jane grew stronger. Now she lifts free weights two or three times a week. "Exercise and weight lifting relieve pain. You just have to take it slow and listen to your body," she says. (I also found this to help, however mine was so severe that I started out by buying 1 & 2 pound small bar bell type weights sold at any Wal-Mart or K-Mart. Also the wrist and ankle weights. that way I could put them on anywhere and do a few lifts. It was very painful at first and I had to force myself to do it. However after time it comes easier and easier. It just takes discipline.)Slow Down And Breathe
Before he got sick at age 39, Steve Lindsay, of Tenants Harbor, Maine, worked long hours as a sculptor and teacher. In his free time, he liked to garden, row and hike. "All of a sudden my lifestyle fell apart," says Steve, who would wake up feeling as though he'd climbed a mountain without preparing the day before. (Most of us fibromites can relate to Steve for he has just discribed most of our mornings!) Now 50, Steve says he has learned to accept the limitations imposed by fibromyalgia. "I can't do everything I used to do," he says. "I have to pace myself and take it easy."Stress can also exacerbate symptoms. Cognitive behavioral therapy helps teach relaxation techniques, such as deep breathing, medication, and techniques for coping with stress. Patients are encouraged to simplify their lives by paring down social obligations and accepting their limitations. (They make it sound so easy when in fact it is so hard. I myself have found that stress is one of the main triggers for a frbro-flair for me. Also it is hard to avoid because spouses and others do not understand this dreaded disease. Even most doctors don't. We are called hypocondriacts, whinners, drug addicted. It is hard to find a Doctor who will treat fibro because it iis so misunderstood. They don't see our pain only that we want pain medication. Their first thought is addiction. Therefore they run backwards. There are a few of what we call friendly doctors out there. I will try to get doctors in as many states as I can that will treat our pain.)The Rx Factor
Even with exercise and lifestyle changes, many fibromyalgia patients need medication to help relieve pain, fatigue and other symptoms associated with the disease.*0* To prevent inflammaton, nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil) and naproxen (Aleve), and cox-2 inhibitors such as celecoxib (Celebrex) and rofecoxib (Vioxx). (PLEASE if you take these drugs eat a little something if only a couple crackers before taking. Especially if taking Celebrex or Vioxx as they will eat the lining to your stomach up only adding to your problems. I know this first hand!)
*0* For relief of minor pain, analgesics such as acetaminophen (Tylenol) or a more powerful prescription drug.
*0* For Muscle pain, muscle relaxants such as cyclobenzaprine (Flexeril).
*0* For severe pain, strong prescription painkillers such as tramadol (Ultram); opiate agonists; or narcotics, which include oxycodone (OxyContin) propoxphene (Darvocet) and meperdine (Demerol). (I have taken all of these, I am activly taking Ultram but get little or no relief from it. Out of these medications the only one's I have actually gotten relief from is Demerol, it helps some. The best to help is OxyContin. I have problems with either of these making me sick at my stomach, however I don't have to worry about it because good luck on finding a doctor who will prescribe either of them, If you do let me know. HAHA)
*0* For presistent pain in specific locations, injections of anesthetics such as lidocaine.
*0* To alleviate sleep deprivation, low doses of tricyclic antidepressants such at amitriptyline (Elavil) and nortriptyline (Aventyl); sedatives such as zolpidem (Ambien); or selective serotonin reuptake inhibitors (SSRIs) such as fluoxetine (Prozac), paroxentine (Paxil) and sertraline (Zoloft). (I have taken all of these at one time or another. Most did not help. The one that did was Prozac however I had serious sexual side affects from it. Total loss of sexual drive. I stopped taking it on my own without doctors permission. My stress level skyrocketted in about a week. Then I decided to stop smoking and the doctor gave me Zyban. I have had great results with it. I didn't stop smoking but my stress levels are down and NO sexual side affects. I also take Clonazepam (Clonipin) for nerves and sleep. It is a long acting Xxanax it did help but I have been on it so long and have had to have incresses in amounts and still now little help. I was having a lot of stomach problems and was sent to a specialist. I have iritable bowel which most of you know is another side affect of fibro. He gave me what is an antidepressant that he said in low doses controls the iritable bowel it is Doxepin. It has helped some with iritable bowel however has helped me to get more restorative sleep. Also I was having really bad Migraines and stress related headaches. The nueroligst gave me a medication called Tizanidine which is a muscle relaxer but helps the headaches as well. But I have found it to help with the stiffness in my muscles.)
*0* Medications to treat other ailments that sometimes accompany fibromyalgia, such as irritable bowel syndrone, migraines headaches, restless leg syndrome and cold intolerance.(I have already disscussed all but 2 of these in the upper paragragh. I also have the last 2. Unfortunatly I don't know anything to help the Cold intolerance. I can even be indoors and in my bones I feel the cold from outside. As for the restless leg syndrome my sister & I both have found out Benedryl makes this worse and keeps us from sleeping. But the medication Tizannidine that they gave me for headaches has also helped this.)
Is There Any Alternative?
Although no alternative remedies have been scientifically proven to treatfibromyalgia, many doctors recommend nutritional supplements, vitamins and minerals along with prescription drugs. "When I first started out, I only prescribed traditional treatments," says Stuart Erner, M.D., an internist in Albany, New York, who has treated fibromyalgia since the late 1980's. "But I was not getting much response, so I started using nutritional supplements and herbal remedies. The combined approach is generally more effective than traditional remedies alone," he says. Below, a few of his recommended supplements.*Coenzyme Q10 may boost energy, fight off infection and improve cognitive functioning.
Melatonin and valerian are believed to help promote deep sleep.
Magnesium and malic acid are thought to relieve pain and fatigue.
5-hydroxytryptophan (5-HTP) helps improve sleep and mood and reduces carbohydrate cravings.
St. John's wort may ease depression.
* Always check with your doctor before using supplements, as they can interfere with other medications.
The best I have ever felt since having fibro is I found a company that compiles a vitimin especially for you. It worked very well for me and I had several good months with NO fibro flares. That is when I told all I might have found a miracle, however sadly I couldn't afford to continue it as it cost $60.00 a month and on disability as my only income I had to stop taking it. I will try to find the company for those who would like it however. If I succeed I will send another e-mail. The next best thing I have found is at GNC health food stores. I can't think of the name right off but it is in a Gold box and has 4 bottles of vitamins and minerals. Each do a different thing. I did get some relief with it. But, there again it is fairly expensive.
"National Institute on Drug Abuse," NIDA on
"Addiction vs. Dependence"
There's a 0.03% chance you'll become addicted on narcotic medicine if you're a pain patient. That's 3 hundredth's of 1 percent.
"This is what distinguishes the pain patient who is tolerant to and physically dependent on morphine, from the addict who is also tolerant to and physically dependent on heroin. Both are self-administering an addictive drug several times a day. But while the addict takes his drug to get high, "mellow out," and largely avoid life, the pain patient takes his drug to get on with life. This apparently subtle distinction between the contingencies surrounding drug use lead to a remarkably different outcome for these two different kinds of users. Heroin addicts are lost to themselves, to their families, and to society. Not only can't they work, but they are almost certainly engaged in criminal activity, and they are at high risk of a variety of infectious diseases, including hepatitis and AIDS. Indeed, intravenous drug users have become the major vector for the spread of AIDS into the heterosexual community in this country. Current estimates are that more than 55% of addicts in New York City are HIV positive. (16)"
"Pain patients, by contrast, couldn't be more different. Being on an opioid allows them to interact with their families, to get out of hospitals, and to go back to work. Indeed, their efforts to maintain their health are in marked contradiction to the utter disregard addicts show for their health. If we wish to equate addicts with pain patients, the more appropriate comparison is with the under treated pain patient."
"He is in the hospital or inactive at home, he is a major drain on his family's emotional and financial resources, and he does not contribute productively to society."
"Another difference between addicts and pain patients comes when it is time to get off the drug on which they are physically dependent. For addicts, this is a major hurdle. For the pain patient, it is typically an uncomplicated process. ... Drugs have a completely different meaning to pain patients, however...."
"Because of the meaning of drugs in an addict's life, drug addiction is a chronic, relapsing condition. Because of the very different meaning of drugs in a pain patient's life, drug addiction rarely, if ever, occurs after opioid use has stopped. This is a crucial point. The data most often cited to link addiction to medically administered opioids were derived from studies with addicts. In the first place, this group is highly unrepresentative of the general population. In the second, it is made up of highly unreliable people. Self-reporting about drug use by addicts is not the method of choice in studying drug use. The more appropriate data to address this issue have been derived from retrospective reviews of large numbers of patients who received opioids to determine how many became addicts. Most important among these are the legal barriers we have erected to limit the use of opioids a Of 24,000 patients studied, only 7 could be identified who got into trouble with drugs as a result of medical administration." *
"The conclusions of this discussion are clear: (a) dependence and addiction are not equivalent to each other; (b) patients who become dependent on opioids during the course of medical therapy rarely become addicted to those drugs; and (c) in managing pain with opioids, there is little need to fear addiction. Tolerance to opioids is rarely a problem because it is possible to continuously increase the dose. Dependence is only a concern when prescribing drugs with antagonist properties and in managing withdrawal."
"If addiction is not a reason to avoid using opioids, many of the other reasons that have led to widespread under prescribing can be addressed more directly. Mind the lack of knowledge among health care professionals about the proper use of these agents."
________
7 out of 24,000 would be: 7 into 24,000 = 0.0002916. In percentage that would read: 0.03% or 3 hundredth's of 1 percent!
"There is better than a "99.9% chance that you will NOT become addicted if your doctor gives you adequate and ongoing opioid medication for your suffering, if you are a valid pain patient!
"You will not make any patient an addict if you give them drugs to treat their pain," says Henry Farkas, MD, MPH, Medical Director of the Northern Chesapeake Hospice and a staff physician at Union Hospital, in Elkton, MD. He pointed to the results of a very large study done in the 1980s, which found that only four patients became addicted out of 12,000 treated with opiates for pain. "It's just not a problem for more than 99 percent of people," he said."
Below is a description of fibromyalgia syndrome (FMS), but because of its substantial symptom overlap with chronic fatigue syndrome (CFS), it can be viewed as applying to chronic fatigue syndrome patients as well.
WHAT IS FIBROMYALGIA SYNDROME?
FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments and tendons--the fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research later proved that inflammation did not exist.
Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with fibromyalgia, but it shows up in people of all ages.
To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state and this is why several experts in the field of FMS and CFS believe that these two syndromes are one and the same.
SYMPTOMS AND ASSOCIATED SYNDROMES
Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, burning, throbbing, shooting and stabbing. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.
Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating.
Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that fibromyalgia syndrome patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it. In most cases, a physician doesn't have to order expensive sleep lab tests to determine if you have disturbed sleep. If you wake up feeling as though you have just been run over by a Mack truck--what doctors refer to as unrefreshed sleep--it is reasonable for your physician to assume that you have a sleep disorder. It should be noted that most patients diagnosed with chronic fatigue syndrome have the same alpha-EEG sleep pattern and some fibromyalgia-diagnosed patients have been found to have other sleep disorders, such as sleep myoclonus or PLMS (nighttime jerking of the arms and legs), restless leg syndrome and bruxism (teeth grinding). The sleep pattern for clinically depressed patients is distinctly different from that found in FMS or CFS.
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas and nausea represent symptoms frequently found in roughly 40% to 70% of fibromyalgia patients.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 50% of fibromyalgia patients and can pose as a major problem in coping for this patient group.
Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJD, causes tremendous face and head pain in one quarter of FMS patients. However, a 1997 report indicates that as many as 90% of fibromyalgia patients may have jaw and facial tenderness that could produce, at least intermittently, symptoms of TMJD. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the joint and not necessarily the joint itself.
Multiple Chemical Sensitivity Syndrome - Sensitivities to odors, noise, bright lights, medications and various foods is common in roughly 50% of FMS or CFS patients.
Other common symptoms - Painful menstrual periods (dysmenorrhea), chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.
Aggravating factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.
POSSIBLE CAUSES
The cause of fibromyalgia and chronic fatigue syndrome remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that's already present in the form of genetic predisposition.
What could this abnormality be? Theories pertaining to alterations in neurotransmitter regulation (particularly serotonin and norepinephrine, and substance P), immune system function, sleep physiology, and hormonal control are under investigation. Substance P is a pain neurotransmitter that has been found by repeat studies to be elevated threefold in the spinal fluid of fibromyalgia patients. Two hormones that have been shown to be abnormal are cortisol and growth hormone. In addition, modern brain imaging techniques are being used to explore various aspects of brain function--while the structure may be intact, there is likely a dysregulation in the way the brain operates. The body's response to exercise, stress and simple alterations in position (vertical versus horizontal) are also being evaluated to determine if the autonomic nervous system is not working properly. Your body uses many neurotransmitters, such as norepinephrine and epinephrine, to regulate your heart, lungs and other vital organs that you don't have to consciously think about. Ironically, many of the drugs prescribed for FMS/CFS may have a favorable impact on these transmitters as well.
COMMON TREATMENTS
Traditional treatments are geared toward improving the quality of sleep, as well as reducing pain. Because deep level (stage 4) sleep is so crucial for many body functions, such as tissue repair, antibody production, and perhaps even the regulation of various neurotransmitters, hormones and immune system chemicals, the sleep disorders that frequently occur in fibromyalgia and chronic fatigue patients are thought to be a major contributing factor to the symptoms of this condition. Medicines that boost your body's level of serotonin and norepinephrine--neurotransmitters that modulate sleep, pain and immune system function--are commonly prescribed. Examples of drugs in this category would include Elavil, Flexeril, Sinequan, Paxil, Serzone, Xanax and Klonopin. A low dose of one of these medications may be of help. In addition, nonsteroidal, anti-inflammatory drugs (NSAIDs) like ibuprofen may also be beneficial. Most patients will probably need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, acupuncture, acupressure, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.
WHAT IS THE PROGNOSIS?
Long term follow-up studies on fibromyalgia syndrome have shown that it is chronic, but the symptoms may wax and wane. The impact that FMS can have on daily-living activities, including the ability to work a full-time job, differs among patients. Overall, studies have shown that fibromyalgia can be equally as disabling as rheumatoid arthritis. On the other hand, follow-up of people meeting the chronic fatigue sydnrome criteria indicates that as many as 40% may significantly improve but few are thought to completely recover from this syndrome. Longer term follow-up studies are not available to indicate whether these "improved" CFS patients later relapse with an increase in symptoms. A preliminary follow-up study by the CDC (Centers for Disease Control) reveals that for those individuals with chronic fatigue syndrome who do not recover or significantly improve after five years duration, their most prominent symptom changes from fatigue to muscle pain with concentration problems (sounds a lot like the permanent syndrome of fibromyalgia but the CDC is not checking patients for tender points).
According to a research study by Dedra Buchwald, M.D., people who meet the criteria for both FMS and CFS tend to be at the more severe end of the spectrum of symptoms and are more likely to become work-disabled. Buchwald says her findings underscore the importance of recognizing concurrent fibromyalgia and chronic fatigue syndrome (Rheumatic Disease Clinics of North America 22(2):219-243, 1996).
SELF-HELP STRATEGIES
Lifestyle modifications may help you conserve your energy and minimize your pain. Learn what factors aggravate your symptoms and avoid them if possible. Join your local support group and become informed about your condition by subscribing to Fibromyalgia Network newsletter. In the newsletter, you will read about research findings, new treatment options, and tips on coping with fibromyalgia and chronic fatigue syndrome. In addition, Fibromyalgia Network maintains a list of support group contacts and health care referrals, which is free with your subscription. To subscribe click on the pink "Newletters/Resources" side button above, or call our toll-free number, (800) 853-2929. Other educational materials may be ordered from Fibromyalgia Network as well.
FIBROMYALGIA SYNDROME (FMS)
For the most part, routine laboratory testing reveals nothing about fibromylagia or chronic fatigue syndrome. However, upon physical examination, the fibromyalgia patient will be sensitive to pressure in certain areas of the body called tender points. To meet the diagnostic criteria, patients must have:
A. Widespread pain in all four quadrants of their body for a minimum of three months B. At least 11 of the 18 specified tender points (see diagram) These 18 sites used for diagnosis cluster around the neck, shoulder, chest, hip, knee and elbow regions. Over 75 other tender points have been found to exist, but are not used for diagnostic purposes.
While many chronic pain syndromes display symptoms that overlap with fibromyalgia, the 1990 ACR multi-center criteria study (published in the February 1990 issue of Arthritis and Rheumatism) evaluated a total of 558 patients, of which 265 were classified as controls. These control individuals weren't your typical healthy "normals." They were age and sex matched patients with neck pain syndrome, low back pain, local tendinitis, trauma-related pain syndromes, rheumatoid arthritis, lupus, osteoarthritis of the knee or hand, and other painful disorders. These patients all had some symptoms that mimic FMS, but the trained examiners were not foiled--they hand-picked the FMS patients out of the "chronically ill" melting pot with an accuracy of 88%. FMS is not a wastebasket diagnosis!
Although the above criteria focuses on tender point count, a consensus of 35 FMS experts published a report in 1996 saying that a person does not need to have the required 11 tender points to be diagnosed and treated for FMS. This criteria was created for research purposes and many people may still have FMS with less than 11 of the required tender points as long as they have widespread pain and many of the common symptoms associated with FMS. Commonly associated symptoms include:
fatigue
irritable bowel (e.g., diarrhea, constipation, etc.)
sleep disorder (or sleep that is unrefreshing)
chronic headaches (tension-type or migraines)
jaw pain (including TMJ dysfunction)
cognitive or memory impairment
post-exertional malaise and muscle pain
morning stiffness (waking up stiff and achy)
menstrual cramping
numbness and tingling sensations
dizziness or lightheadedness
skin and chemical sensitivities
CHRONIC FATIGUE SYNDROME (CFS)
Chronic fatigue syndrome is diagnosed using the CDC 1994 guidelines published in the Annuals of Internal Medicine 121(12):953-959. A copy of this article can be downloaded from the CDC (Centers for Disease Control and Prevention) Internet site at: http://www.cdc.gov/ncidod/diseases/cfs/defined.htm
To meet the criteria, patients must have:
A. Fatigue
Severe, unexplained fatigue that is not relieved by rest, which can cause disability and which has an identifiable onset (i.e., not lifelong fatigue). It must be persistent or relapsing fatigue that lasts for at least six or more consecutive months.
B. Four or more of the following symptoms:
impaired memory or concentration problems
tender cervical or axillary lymph nodes in neck region (note that they do not have to be swollen but just tender; this can be a problem for people with FMS who have tenderness in these areas as well)
sore throat (but may not show signs of infection)
muscle pain
multi-joint pain (but not arthritis)
new onset headaches (tension-type or migraine)
unrefreshing sleep (wake up in the morning feeling unrested)
post-exertional malaise (fatigue, pain and flu-like symptoms after exercise)
NOTE: Five of the above eight criteria relate to pain and are often present in FMS as well. For both the fibromyalgia and chronic fatigue syndrome criteria, patients should be evaluated for other problems that could cause pain and fatigue, such as low thyroid function, low iron stores, arthritis and many other medical conditions. If any of these problems are found and corrected, but the individual still meets the FMS criteria, these other disorders (FMS and CFS) are viewed as co-existing and deserving of special medical attention. Unfortunately, the CDC criteria excludes people with other medical problems such as hypothyroidism and lupus, but it is okay to have the tender points of FMS or a mild case of depression/anxiety.
As a patient, you are deserving of medical care if the CFS symptoms persist and you should pursue therapy options with your doctor. However, when it comes to research studies or prevalence figures determined by the CDC, you will not be included as a CFS patient if you have any other co-existing medical condition (other than FMS and mild depression/anxiety). On the other hand, FMS is viewed as a distinct clinical entity that stands on its own, regardless of whether a person has other medical problems. This may be one reason why the prevalence figures for FMS (2% of the general population) are so much higher than CFS (roughly 0.5% of the general population).
FMS: Disease Out Of Sight, But Not Out Of Mind
... a closer look at the brain's astroglial cells
Chronic pain seems to be the final frontier in medicine. It's the one main holdout for an easy-to-identify, explainable abnormality. Yet, at the August 5th AFSA 2000 conference in Tucson, AZ, Robert Olin, M.D., Ph.D., from Sweden, was quick to point to the amazingly high incidence of people with FMS (or similar symptoms). Roughly 10% of women and 5% of men have chronic widespread pain according to a survey done in Norway, although not all of them met the strict tender point criteria for FMS.
With chronic pain diseases like FMS being so prevalent, there ought to be more rebellious outcry from patients because truly effective treatments aren't just a doctor's visit away. The number of people struggling to survive with FMS is incredible, and with Dr. Olin's background training in psychiatry, he insists that FMS doesn't fit the model for a psychiatric disease. Patients aren't just faking it: the pain and dysfunction are real. Yet the situation doesn't make much sense when you consider the devastating toll that FMS takes on people's lives. Millions of people are left to live in the shadows of FMS with their pain sight-unseen. This seems to defy logic, unless one factors in an unexpected adversary: the medical insurance industry who demands proof beyond a shadow of a doubt that the pain of FMS equates to serious dysfunction.
The 100% absolute proof that Dr. Pellegrino jokes about in the October 2000 issue is a real dilemma because the theories behind FMS pertain to problems in the brain's inability to function properly. These could be problems that scientists might not be able to prove with current techniques unless patients are willing to donate slices of their living brain tissue to research!
Olin proposes a theory about why your body's functioning could completely contradict the way you appear physically (no swollen joints, no visible abnormalities on X-rays, no obvious signs that you are seriously ill). He hypothesizes that your symptoms have to do with a dysfunction of the astroglial cells in your brain (astroglial cells and glial cells are all part of the central nervous system's cells called the glia). It's only a theory, but one that many brain researchers are beginning to focus their attention on these days as they look for answers to diseases that have none.
"As patients, you have to ask: Why do I hurt?" He adds, "What is the cause? Was it an infection or trauma? Is it due to the initial pain that started in my elbow? What is it? The problem with conditions like FMS is that something started it, but the trigger (and there may be many of them) is probably of no importance at the stage that you are now at. The situation that started your FMS has already hit you, and then sort of runs away, leaving it difficult to trace what actually happened to you."
How do astroglial cells fit into the picture? "In the early 1980's, people thought that everything which was occurring in the brain was happening inside the brain's neurons," says Olin. "Then slowly throughout the 80's, the focus started to shift to the astroglial cells. They were originally thought to play a passive role, to just be the connective or supporting tissue within the brain. Now we know that this is not the case. Astroglial cells comprise 50% of the brain's cells and they surround every neuron, providing regulatory and nutritional functions. They also have receptors on their cell surfaces that respond to neurotransmitters and, if something is wrong, they react by sending signals throughout the brain. If you look at the data on brain imaging in FMS (such as the work of Laurence Bradley, Ph.D.), you will find that several areas have disturbances in brain blood flow ... this could be due to a malfunction in the astroglial cell transmission system."
Olin points out that astroglial cell membrane functions can be disturbed, even long-term, by infections reaching the central nervous system, by physical trauma, as well as by sensory overload. "In this context," explains Olin, "pain is a very strong sensory signal!" Olin believes this theory not only explains the symptoms of FMS, but also the associated neurological, immunological and hormonal system disruptions.
Adding to Olin's theory are research studies done by Ian Campbell, Ph.D., at Scripts Institute in La Jolla, CA, in which he has shown that mice bred to overproduce an immune chemical called IL-6 (a cytokine), look fairly normal on the outside. Yet, they have serious memory concentration problems and they are highly pain sensitive. They die prematurely and a look at their astroglial cells reveals that they are under siege by inflammation. Without an autopsy, however, the mouse's problems appear sight-unseen.
Olin concludes that his astroglial cell theory explains why FMS is stubbornly persistent and why it is so difficult to reach these cells in terms of effective treatments. BUT, once researchers start to look at these and related cells in the brain, the future for FMS patients could swiftly change!
Understanding
Fibromyalgia
by Robert Harrison
This report is about fibromyalgia. About what may be happening to your body when you have it. What the underlying causes of it may be. And what may need to be considered in attempting to deal with it. So that you may have a better understanding of what to do to fight it.
Fibromyalgia shares much in common with other autoimmune diseases. Research on any particular one will usually apply to the other autoimmune diseases to some degree. They have similar underlying causes and conditions.
Let's start with a brief description of the symptoms common to fibromyalgia and other autoimmune diseases. Then I will attempt to explain in as comprehensive and understandable a way as possible, the various possible causes of fibromyalgia, the vast number of problems that develop in your body when you have fibromyalgia, and what to consider in deciding how to combat fibromyalgia so you may be able to get healthy again.
(Spouses and close family members, even though someone may look perfectly healthy, if they have fibromyalgia, they are truly ill. The pain is not in their head.)
Let's start by going over some of the symptoms.
Fibromyalgia Pain:
If you have it, you've got pain. Often in the neck and shoulder muscles extending down the back. Can be in the joints and muscles also.
Fatigue: It's not a good fatigue when you have fibromyalgia, from working hard, but an anxious, uncomfortable fatigue related to lack of sleep. Or a disruption of the energy production mechanism in cells either from lack of oxygen, increased toxicity, infections or a malfunction of the mitochondria.
Sleep Disturbance:
About 80% of people with fibromyalgia may wake up three or four times a night. In some cases you don't wake up, but in the morning you still feel like a truck ran over you. The reason being that when you have fibromyalgia, subliminal seizures kick you out of stage 4 sleep to stage 1 sleep so you can't sleep deeply and aren't rested.
Short Term Memory Loss: Because of a low thyroid and heart complications typical in fibromyalgia, there is a decrease in blood flow to the left lobe of the brain resulting in an oxygen deficiency in the brain. Which causes the memory loss and forgetfulness so common in fibromyalgia.
Emotional Liability: Someone may cry more easily, be more anxious and fearful. This is caused by the fibromyalgia, not a reaction to having fibromyalgia.
Depression: As with the emotional symptoms, the hypothalamus is involved. This is not clinical depression, but is caused by fibromyalgia, and has an actual physical cause for it.
Low Thyroid Function. About 85% have this symptom, but only about 10% of the time will it show up on a typical thyroid test. If you get tested, have both a T3 and T4 done. About 10% have excessive hair loss. For most everyone with fibromyalgia, a poorly performing thyroid will show up as subnormal temperatures.
Gastrointestinal Problems: About 75% of people with fibromyalgia have this symptom. Can be anything from gas, bloating, cramps, diarrhea or constipation to hiatal hernia, irritable bowel syndrome or Crohn's Disease.
Swollen Glands, Chemical Sensitivity, Headaches: Allergies often develop with fibromyalgia, usually after 3 to 5 years. Eyes can be light sensitive for 6 months or longer. Dry eyes can develop. About 20% experience a very uncomfortable disequilibrium of vertigo, almost an out of body feeling that can be most disconcerting.
Low Blood Sugar.
Candida Yeast Infections: These are very common if you have fibromyalgia. Check your tongue. If it has a white coating, you have it. Or take the spit test you will read about later. Women can have vaginal yeast infections in conjunction with this. A candida infection alone can cause a number of fibromyalgia type symptoms.
Tingling Hands. Ringing Ears. Cold Toes. Cold Fingers. Metallic Taste in mouth. If you have fibromyalgia, you may have a few of these symptoms.
Overdoing: You overexercise or overwork when your are feeling good, and then feel worse for days afterward. This can cause serious problems. In healthy people the body shuts down when the anaerobic threshold is reached as a lot of pain is experienced. This warning does not occur with fibromyalgia. Instead, the body continues to exercise and experiences no pain as the lactic acid builds up, and the body ends up recirculating carbon dioxide. Which is not a healthy thing to have happen to you. It is important not to push too hard when you start recovering from fibromyalgia or this will set you back.
Fluttering Heart. Panic Attacks. Rapid Heartbeat. Mitral Valve Prolapse. Usually blood pressure is low, though it can get high later on. The heart underpumps blood because it is getting incorrect messages from the autonomous nervous system. The body's feedback loop picks this up and over-reacts. And you get these symptoms.
If you have fibromyalgia, it is not likely you have all these symptoms. But you will have quite a few of them to one degree or another. And most definitely the pain, or they wouldn't be calling it fibromyalgia.
This information is for educational purposes only. I am not a doctor. This is not medical advice on how to treat fibromyalgia, but information to help you understand fibromyalgia.
Fibromyalgia Pain
I don't know the cause of fibromyalgia pain. Other than of course, it is usually a consequence of the autoimmune response that is causing much of the damage in fibromyalgia. So to give you a little more understanding about what may be going on to cause the pain, I am going to approach this a bit backward. Drawing some inferences from what anecdotally has helped with pain. There are four different approaches that come to mind.
First is fairly simple. Stop the immune system from attacking the body, and as the immune system gets back in balance, the pain goes away. Indicating that the body is able to repair itself once the attack on itself ceases.
Second, there seems to be a strong inflammatory, free radical component to this fibromyalgia pain. I say this because the mentor who first taught me about autoimmune diseases, found that a huge amount of a high quality anti-oxidant and anit-inflammatory supplement, in this case a particular grape extract, would consistently get rid of pain. And other anti-inflammatory supplements like MSM are also known to provide pain relief if large quantities are taken.
Third, another interesting theory is that myelin sheath damage (the myelin sheath protects the nerves) may cause the pain. This speculation developed in an attempt to explain why high doses of a collagen product, with highly digestible protein, helped reduce someone's pain within a couple of days. It was speculated that the pain reduction occurred because people with autoimmune diseases have a hard time digesting protein, so can't repair cells efficiently. And in this case the body was able to repair the myelin sheath using the easily digested collagen protein.
These could all be tied in together. Maybe it is the myelin sheaths being attacked by the inflammatory autoimmune response that is the main cause of fibromyalgia pain. However, I don't know where this fourth example fits in.
Fourth, a few years back a doctor developed and recently patented a complex energetic unit based on magnetics. The patent office gave it a completely new designation as an energetic unit rather than a magnetic because it acts utterly unlike your typical magnetic products. It's energetic pattern matches exactly the energetic pattern of the cells. Anyway, she tested it for several years on tens of thousands of people with pain. And found that when used appropriately, it worked 85% of the time to relieve pain. Sometimes in days, sometimes taking a couple of months or so. I guess this indicates that if you get the body functioning more healthily at the energetic level, it will be able to heal itself.
Immune System Malfunction in Fibromyalgia
As a malfunctioning immune system is a major problem in fibromyalgia, the place to start understanding fibromyalgia is the immune system. Fibromyalgia is a tough disease. Multiple dysfunctions develop when you have fibromyalgia that have far reaching effects on the body. And most of them start with the immune system.
One point. Some researchers feel that sometimes an autoimmune diseases (and Parkinson's) are caused by consumption of aspartame (in diet drinks, Equal, Nutrasweet) and/or MSG. If you drink diet sodas or commonly consume either of these two chemical excito-toxins, Stop. They may be cause many fibromyalgia like symptoms.
It is the malfunctioning immune system attacking the body in fibromyalgia that causes the fundamental autoimmune condition. So let's start by taking a look at what may allow the body to attack itself.
Lack Of Cellular Communication In Fibromyalgia
So why does the immune system attack the body when you have fibromyalgia? After all, the immune system is supposed to attack things like pathogens or cancers that are "non-self". Even when mycoplasma and viral infections deliberately confuse and overactivate the immune system, the question remains as to why immune cells attack the cells they are supposed to be protecting. They don't attack them when they are activated in a healthy body.
It wasn't till I learned about the role of long chain carbohydrates in cellular communication that I understood what may be the reason why this happens. Here's the story.
Different types of long chain carbohydrates reside on the surface of cells. Communicating information about that cell, and allowing it to interact and exchange information with other cells. One thing they communicate is that they are a part of the body. So don't attack. Things that don't have carbohydrate based cell markers on them are treated as non-self by the immune system. And can be attacked by the immune system as these unmarked cells fall into that "non-self" category.
The essential heavy molecular weight carbohydrates that make cell markers aren't common in our diets anymore. With healthy individuals this is not a problem because they can be made from ordinary carbohydrates. However, the process required to do this is enzyme intensive. And as immune system dysfunctions develop in fibromyalgia, enzymes are wiped out throughout the body. (You'll read more about this in a few minutes.) So someone with fibromyalgia usually becomes lacking in enzymes, and may not be able to produce adequate amounts of these long chain cell markers.
Which may be why, in fibromyalgia, some cells are not able to communicate to the immune system that they are part of the body. And if the immune system is overactivated, it might attacks those unmarked cells. Causing inflammatory damage, and ultimately organ and joint damage over long periods of activation.
There has been a lot of research into these long chain carbohydrate molecules.
Acta Anatomica, a European journal, states that long chain carbohydrate molecules have a coding capacity surpassing that of amino acids.
In March, 2001, Science Magazine dedicated virtually the entire magazine to the essential saccharides that make up these cellular communication keys.
The University of California, San Diego, announced the establishment of a Center for the further research and development of the Science of Glycobiology. And the President of the Royal Academy of Medicine in London, Dr. John Asford, said that "Sugars are going to be the molecules of the next decade."
Lending credence to the importance long chain carbohydrate molecules have on the immune system.
It seems to me that there are two general immune system problems with fibromyalgia. Poor cellular communication because of lack of cell markers on the cells. And the one we will discuss next, an over-activated, out of balance immune system that may attack those cells.
How An Out Of Balance Immune System May Lead To Fibromyalgia
To put it simply, your immune system has two different modes or sides. Th-1 or T helper-1 cells fight intracellular pathogens like viruses, mycoplasma and bacteria. Th-2 or T helper-2 cells fight pathogens outside the cells. When the immune system is healthy, these two modes function together, supporting each other in keeping the body healthy. But if they get out of balance, if the Th-1 side becomes weak and the Th-2 side over-activated, fibromyalgia can develop.
If you have fibromyalgia, you have a worn out immune system. The Wall Street Journal, August 2nd, 2000, reported that a team of researchers lead by Dr. Weyand studied patients with an autoimmune disease and compared them with people of similar age without the condition. They found that patients 20 to 30 years old had a collection of immune cells that looked as though they belonged to 50 to 60 year olds.
Worn out Th-1 cells actually can allow an elevated, overactive Th-2 immune response as they have some responsibility for controlling the Th-2 activity. Or the opposite can also happen. The immune system must be in balance to operate efficiently. It needs to be modulated back into balance to stop fibromyalgia.
Several other things can cause Th-2 cells to overactivate. Stress for one. Stress produces cortisol. Cortisol stimulates the production of Interleukin 6 and other Th-2 cells. For this reason fibromyalgia may manifest after a stressful event. A divorce, an accident, a death in the family.
Long term exposure to toxins creates physical stress, and thus may activate Th-2 cells. In addition to the vast number of toxins we are exposed to in our food, water and environment, this toxicity can come from poor digestion, leaky gut syndrome (often from candida), and mycoplasma, bacteria and other infectious agents.
One study by Dr. Dunstan concluded that a pesticide mutated bacteria in the guts produced a potent pesticide-like toxin. Which is like having a miniature Raids factory in your guts. He found in this study done in Australia in the early 90's that everyone with chronic fatigue was producing this toxin. And given that all autoimmune diseases are similar, you may have these too if you have fibromyalgia. The worse the symptoms, the more of this toxic chemical was found, so there was a direct connection between the quantity of this toxin and the severity of the disease. Even in the so called healthy group in this study, Dr. Dunstan found that 40% had this toxic chemical present in very small amounts. Obviously not enough to cause an illness, but setting those people up for the possibility of developing an autoimmune illness in the future.
This is one reason that someone with fibromyalgia needs top quality probiotics (friendly intestinal bacteria) that may help kill any mutated bacteria that might be producing a toxic pesticide-like chemical.
Ritchie Shoemaker, M.D. reports on his investigations which lead to a similar conclusion.
"The invisible link was "biotoxins" - poisonous chemical compounds that travel with impunity through the human body. These tiny molecules shuttle from nerve to muscle to brain to sinus to G.I. tract and other organs in a continual circuit, while triggering the symptoms we define as 'biotoxin-related illness.'
"As recent research clearly demonstrates, the compounds are manufactured by a growing number of microorganisms that have begun thriving in our ecosystem. ....They tell us, quite simply, that toxin-forming microorganisms have brought a new kind of disease into our world - a pathology in which bacteria, fungi, algae and other tiny organisms have "learned" how to manufacture toxins that linger on in the human body, long after the organisms themselves are dead. ...
"The pathogens may differ, but the biotoxins they produce all do their damage by setting off an "exaggerated inflammatory response" in humans. While hiding out in fatty tissues where blood-borne disease-fighters can't get at them, they 'trick' the body's immune system for fighting germs into launching attacks of inflammation in many organ systems, including joints, muscles, nerves and brain."
Years ago I would have guessed that it was environmental toxins that were the primary cause of autoimmune diseases like fibromyalgia. Now I seems to me that pathogens may be the primary cause in many cases.
Th-2 Side Activation By Viruses And Mycoplasma
According to Dr. Paul Cheney, one of the top autoimmune doctors in the world, viruses, especially the herpes viruses commonly found in fibromyalgia, and some bacteria and mycoplasma, make proteins that mimic IL-10. This tricks the immune system into activating Th-2 cells instead of the Th-1 cells that are supposed to activate and kill them. They trick the immune system into thinking that the threat is coming from the opposite side. So the immune system shifts from the Th-1 mode that attacks them, to the Th-2 mode that does not. They increase their chances of survival by diverting the immune system. And literally initiate an autoimmune condition like fibromyalgia.
Infections are found in a high percentage of people who have fibromyalgia. People with fibromyalgia or any other autoimmune disease often have more than one type. The infections are bacterial, viral and/or from various types of mycoplasma. In some cases these infections are opportunistic. In other words they occur because the immune system has been wiped out by fibromyalgia, and can't fight these infections off. (The Th-1 side is worn out.) More insidiously, these infections may be the underlying cause of the malfunctioning immune system creating fibromyalgia in the first place.
Donald Scott, based on his historical research of government records, says that a biological weapon, a mycoplasma disease agent, was tested years ago on unknowing US and Canadian populations. Including the Lake Tahoe area where Dr. Cheney first reported cases of autoimmune diseases. Donald says he has been told by ex-servicemen who were working with this biological weapon during the Korean War that they were told it caused multiple sclerosis in a certain percentage of people. And he says that records show it was given to Iraq during the 80s to support their war against Iran, and was most likely used against US troops at the end of the Gulf War, perhaps causing the Gulf War Syndrome. Because it spreads through the air, he says everyone has been exposed to it.
I look at such stories with a grain of salt.
However, noted microbiologist, Garth Nicolson, who is said to be among the 100 most cited researchers in the world, found mycoplasma in approximately 50% of the people he tested who had Gulf War Syndrome. Including his daughter. He also found that some of the mycoplasma contained an unusual gene sequence probably inserted by a laboratory. Which would imply a biological weapon.
Garth's research, and his wife's, found that the mycoplasma do activate an immune response. They then hide from the immune system inside the immune system itself, in white blood cells. So they are very hard to get rid of. They may cause infections deep within any organ. The immune system ends up attacking cells which have mycoplasma in them, and can get "turned on" to attacking the host cells. Thereby initiating an autoimmune situation in the body.
In further testing of other autoimmune diseases, Garth found similar levels of viral, bacterial and mycoplasma infections. These (and perhaps the fungi and other organisms Dr. Shoemaker speaks of) likely initiate the autoimmune response in many cases of fibromyalgia.
Mycoplasma literally may cause symptoms such as fatigue, pain and over-toxicity as they poison and disrupt the cells they have invaded. They produce potent toxins inside the cells they reside in. These toxins disrupt the energy production pathways so that infected cells cannot produce energy.
Mycoplasma also damage the immune system when they invade Natural Killer cells. This destruction renders the body susceptible to viruses. Such as the Herpes virus. Which in addition, tricks Th-1 cells, that are supposed to fight viruses, into remaining dormant. And activates the Th-2 cells which are not equipped to attack them.
High doses of antibiotics used for long periods of time, commonly a year or more, have had some success against mycoplasma and some of the other bacteria and organisms that produce these toxins. But antibiotics aren't perfect for killing mycoplasma because they can't get into cells, which is where the mycoplasma reside. They can only kill mycoplasma after the cell bursts open, and the mycoplasma must leave it to find another cell. So the amount of time that they may be effective is small. In addition, antibiotics are unable to fight viral infections.
This is why products that can naturally inhibit viruses, bacteria, mycoplasma and other organisms could be of great value for someone with fibromyalgia. Especially if taken in sufficient quantity to have a therapeutic result. And when combined with products that help detoxify the body of the toxins produced by these micro-organisms.
Let's continue on with what happens in your body when you have an autoimmune situation.
What happens when Th-2 cells are activated and Th-1 cells are worn out, is this...
Dr. Cheney explains that your body's only defense against pathogens (like viruses and mycoplasma) ends up being Th-2 side RNase L activity.
He explains that RNase L cannot kill pathogens. It can only stop them from reproducing. According to Cheney, "It's a line in the sand saying 'No more replication', and it waits for Th-1 to come and kill them. But Th-1 never comes. RNase L sits there and grinds away, possibly going up and down as the pathogens activate and reactivate. But they never get wiped out. RNase L holds the line, waiting for the cavalry that never arrives."
This RNase L activity causes big problems because...
While it is trying to hold the line, it is, according to Cheney, inhibiting all the enzymes in the body, disrupting protein synthesis, and generally making you miserable.
Even worse, as RNase L grinds away, it eventually shifts into "afterburner" desperation mode - a more powerful and deadly low molecular weight form. Research indicates that this form of RNase L is up to six times more destructive to enzymes and protein synthesis than the typical form.
What is supposed to happen when a healthy person encounters an intracellular organism? The regular form of RNase L inhibits replication, the immune system revs up and wipes out the virus or mycoplasma, then everything down-regulates, and they recover. This doesn't happen in fibromyalgia.
In fibromyalgia, the RNase L activity shifts to a more destructive lower weight form and does not shut off. It stays activated much longer, resulting in pronounced cellular metabolic dysfunction, and also effects the liver.
Liver function declines because the enzymes used by the liver to detoxify toxins are being creamed by the activity of the aberrant RNase L.
When this happens, a person with fibromyalgia becomes susceptible to toxins. Because RNase L has wiped out the enzymes the liver needs to detoxify the body. Which leads to high levels of toxicity in fibromyalgia. Wrecking havoc in the body.
This liver dysfunction may also help cause a fibromyalgia flare-up...
Antibodies are produced by the Th-2 side to attack pathogens in the blood. Normally, excess antibodies are removed by the liver. However, when liver enzymes have been destroyed by RNase L activity, the liver may not be able to remove the excess antibodies. Which then might attack the body in an autoimmune response.
Steroids and the immune response...
As you can see, balancing the immune system so that it works the way it is supposed to is a fundamental need when you have fibromyalgia. When a doctor gives a person suffering from fibromyalgia or some other autoimmune disease prednisone or another steroid, which most seem to do, they are trying to turn off that over-activated Th-2 side of the immune system. Unfortunately, their success rate is low because they are using a poor tool. Because steroids don't just effect the Th-2 side, but they also wipe out the Th-1 side. Which needs to be boosted, not depressed. For unless it can be brought up to normal, it will allow the Th-2 side to overactivate as these two sides are always in a balance. If one is too low, the other will naturally be too high. Like a teeter-totter.
Clearly, putting the immune system back in balance, turning off the Th-2 activity and strengthening the Th-1 side is of primary importance in fighting fibromyalgia. And that to do this you may also have to deal with the mycoplasma or viral or whatever other infections that may be involved in the fibromyalgia. You have to deal with the depleted enzyme levels caused by RNase L activity. And with the toxicity that builds up when the liver and cells can no longer effectively detoxify toxins.
Now your body is a remarkable healing machine. It could be that if you can support and balance your immune system adequately and get it to the point where it is not causing further problems, your body may be able to start healing itself and start taking care of the other problems that develop in fibromyalgia. Generally, however, you will have to deal with all the issues in order to get healthy again. So with that in mind, let's learn a little more about enzymes and their role in fibromyalgia.
Enzymes and Fibromyalgia
There are two general types of enzymes in the body. The digestive enzymes for digesting food, and metabolic enzymes which are involved in virtually every interaction in the body. When RNase L starts wiping out enzymes and protein synthesis, the consequent lack of enzymes affects digestion and just about everything else too.
When you eat cooked and processed foods, the enzymes in the food are destroyed. The digestive process needs those now dead enzymes to break down food in the upper stomach. It naturally produces only enough enzymes to finish breaking down the food in the lower stomach. So when you eat foods which no longer have live enzymes, the food doesn't break down in the upper stomach. And the body has to produce extra enzymes to try and break down the food in the lower stomach. And if you have fibromyalgia and don't have many enzymes, how are you going to produce extra enzymes? You can't easily do so and digestion may suffer.
Something else happens. Enzymes are proteins. When you aren't able to digest the proteins in your food well, as is often the case when you have fibromyalgia, your body won't be able to make as many enzymes as it should. So will have an even harder time digesting proteins.
By the way, most people, especially those with acid reflux, do not produce enough acid in the stomach to digest protein. As a consequence, the stomach churns up the food, working hard to try and break it down. And splashes this mixture up the throat, causing acid reflux. Taking additional Betaine HCL and digestive enzymes, not anti-acids, are the combination which can take care of this problem.
Which is why it makes sense to use good digestive enzymes with meals, with betaine for more acidity, and take an amino acid blend that can help the body can make more enzymes.
There is another area of fibromyalgia where enzymes may play a part.
Hypercoagulation, Enzymes and Fibromyalgia
Dr. Cheney says that Immune System Activation of Coagulation, called hypercoagulation, needs to be dealt with early on or other fibromyalgia treatments may not be effective. In hypercoagulation, pathogens and/or toxins activate the immune system to lay down fibrin in blood vessels. The fibrin coats the walls, blocking oxygen and nutrients from getting to nearby tissues. Researchers found that 80% of patients with an autoimmune illness had this coagulation. So this condition undoubtedly is common in fibromyalgia.
Pathogens that activate this include viruses, bacteria (mycoplasma, chlamydia, etc.) and fungi (such as candida). These pathogens are anaerobes, they live in an oxygen deprived environment. And are infections common with fibromyalgia. Fibrination helps them survive because it causes decreased oxygen. And the less oxygen the better for them. Unfortunately, this can cause a great deal of damage in fibromyalgia. Everything from decreased energy to a buildup of toxins and lactic acid in cells.
Hypercoagulation is not an accurate name for this condition as it is not that the blood is too thick. It is that the capillaries become coated with fibrin and the blood cannot flow freely. Fortunately, fibrin can be cleaned off artery walls. Using, of all things, digestive enzymes.
Here's why they can help. If you take a digestive enzyme on an empty stomach, so that it has nothing to digest in the stomach, the enzymes get into the bloodstream. (Many studies prove enzyme supplements do this.) Once there, they may do several things, break down partially digested food, kills pathogens, and clean up the blood in general. Including toxins produced by mycoplasma or any of the other toxin producing micro-organisms. More important for hypercoagulation, enzymes may clean the walls of the blood vessels. Digesting and breaking down fats, and in the case of fibromyalgia hypercoagulation, the fibrin (a protein) that coats the walls.
There is another aspect to this. Mycoplasma and viral infections may cause blood cells to stick together. Called cold algination. Sticky clumps of red blood cells cause problems. Oxygen and nutrients can't get to cells efficiently when red blood cells are clumped up. The cells get stuck in small capillaries and clog them up. Seriously reducing oxygenation to cells. I have heard from nutritionists who use enzyme supplements to clean blood, that taking a good quality enzyme high in protease and lipase on an empty stomach may work to unstick those red blood cells within a short period of time.
So take digestive enzymes between meals and with meals. They help take a strain off the immune system because fewer partially digested food particles will enter the bloodstream. When you can't digest food completely, partially digested food can make its way into the bloodstream.
Where it can act as a toxins and literally cause the immune system to devote energy and resources to cleaning it up. In addition this can cause, in many cases, food allergies to develop. This is especially true if you have a candida infection that is eating holes in your intestinal walls, thereby allowing partially digested food to enter the bloodstream. Enzymes between meals may help clean up this mess.
Lack Of Oxygen In Fibromyalgia
Oxygen, or rather the lack of it at the cellular level, may cause many problems in fibromyalgia. Decreased oxygen to the left side of the brain can result in the short term memory problems so common in fibromyalgia. And may be a factor in the long term malfunctioning of some of the glandular and hormonal systems in the brain.
In addition, buildup of fibrin on the walls of the blood vessels creates low oxygen areas where cells cannot produce an adequate amount of energy. And may be the reason a common symptom in fibromyalgia is cold fingers or feet. Oxygen is also needed to oxidize and detoxify toxins. When cells don't have enough oxygen, they may not be able to detoxify themselves adequately. And they won't be able to produce adequate amounts of energy, which may be the major cause of the fatigue that comes with fibromyalgia.
Oxygen kills anaerobic bacteria, mycoplasma and viruses. It works so well it is used to purify water in many cities. (Ozonation.) As people with fibromyalgia need more oxygen, getting more of it could prove to be, and anecdotally has been, of much benefit to someone with fibromyalgia. So why isn't it used more often with fibromyalgia or other autoimmune diseases?
First breathing it in, you are limited by the amount of oxygen that can be picked up by the hemoglobin in the blood. So it may be difficult to increase oxygen levels dramatically that way. And the drawback to oxygen supplements, the reason they have proven not to be very effective, is that your typical liquid oxygen supplements such as hydrogen peroxide or Vitamin O or whatever, have no way to get oxygen into the cells. The delivery system is lacking. And as the mycoplasma and viruses reside primarily inside cells, and as it is cells that need the extra oxygen the most, these products are limited in their capacity to help.
If you want to fight mycoplasmas and viruses with oxygen, you need to find a way to produce more oxygen inside the cells. Get enough oxygen into the cells, and it may help with the whole range of fibromyalgia caused oxygen deficiencies.
Candida Yeast Infections In Fibromyalgia
Many people suffer from candida yeast overgrowth. Estimates are that 80% of the population does. If you have fibromyalgia, your likelihood of having yeast infections is even higher as your immune system is damaged and probably your intestinal flora too. A major candida yeast infection can produce similar symptoms to those produced by autoimmune diseases. Extreme fatigue, food sensitivities, allergies, etc.
The intestinal tract in general has problems when you have fibromyalgia. Anything from the common intestinal disorders most people with fibromyalgia suffer from, to the pesticide mutated bacteria and other organisms that could be spewing toxic chemicals in your guts. If you want to get healthy, your gastrointestinal disorders have to be dealt with. Naturally. Creating an intestinal environment with the right pH, eliminating the candida overgrowth and bad bacteria poisoning your body. And repopulating the intestines with the friendly healthy aerobic bacteria your body needs. That can help keep the "bad" bacteria under control and help to digest food and eliminate waste.
The reason candida causes so many problems is this. If your body loses its proper immune protection and its friendly intestinal bacteria have been destroyed by antibiotics or whatever, candida can overgrow as it is not killed by antibiotics and "morph" from being a beneficial yeast into a harmful fungus. In its fungal form it develops rhizoids (long root-like structures that are invasive and penetrate the mucosa. Once this happens, the boundary between our intestinal tract and the rest of the circulatory system breaks down, and this allows partially digested proteins to travel into the bloodstream where they basically become toxins.
There are many theories why this happens. Most naturopaths concur that the conversion happens due to some sort of attack on our immune systems - either prolonged antibiotic use, taking steroids or oral contraceptives on a regular basis, or a high sugar diet. It could be a combination of these. It is also conjectured that candida increases its numbers during periods of stress and lowered immune states.
Candida thrives on the foods that are a large part of the typical American diet, which in addition, alters intestinal pH unfavorably. Stress contributes to its proliferation. And, because of its adaptability, it is easily transmitted from person to person in a family.
Simple Home Candida Test:
Try this simple test to see if you have candida. First thing in the morning, before you put ANYTHING in your mouth, get a clear glass. Fill with water and work up a bit of saliva, then spit it into the glass of water. Check the water every 15 minutes or so for up to one hour. If you have a candida yeast infection, you will see strings (like legs) traveling down into the water from the saliva floating on the top, or "cloudy" saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water. If there are no stings and the saliva is still floating after at least one hour, you are probably candida yeast free.
If you have a bunch of threads or cloudiness, and especially if it develops quickly, you can be pretty darn sure you have a serious case of candida infecting you.
Detoxification and Free Radical Damage in Fibromyalgia
The problems in fibromyalgia run much deeper than a messed up immune system, wiped out enzymes, oxygen depleted cells and pathogens making a comfortable home in your guts.
When your liver can't effectively detoxify your body because its enzymes have been wiped out, toxins build up in your cells. Especially so if mycoplasma and other organisms are also producing toxins in them. And their ability to get rid of toxins decreases. So toxins build up in cells. This toxic buildup causes much damage in fibromyalgia. Damage that can persist even if the autoimmune response is turned off.
Dr. Cheney explains that once the toxicity begins, the toxins themselves inhibit and injure the very enzymes needed to detoxify them. Plus, the cells' principle detoxification agent and a major viral inhibitor, glutathione, gets used up early on. Making it difficult for cells to detoxify and kill the viruses infecting them.
Glutathione deficiency has been found to be virtually universal in autoimmune diseases like fibromyalgia. This deficiency has two major implications: detox failure and viral/microbial activation. Glutathione plays a major role in detoxification. This deficiency impairs the body's ability to get rid of toxins.
Consequently, people with fibromyalgia slowly become toxic, storing away poisons in fatty tissue, muscles, organs and the brain. This cellular detox failure can make people with fibromyalgia canaries to their environment.
To detoxify successfully, this glutathione deficiency must be addressed.
Because glutathione is a potent antiviral and anti-microbial weapon, glutathione deficiency compromises antiviral and anti-microbial defenses, and actually stimulates viral replication. Raising glutathione levels inside the cells can stop the replication of almost any pathogen.
A glutathione deficiency compromises our ability to keep old viruses dormant and fight off bacteria. This is why so many people with fibromyalgia test positive for EBV, CMV, HHV6, Mycoplasma, and Chlamydia Pneumoniae, etc.
Indications are that glutathione can stop the replication of any intracellular microbe, including HHV6, Chlamydia Pneumoniae, and mycoplasma. Dr. Cheney found that some of his patients were becoming virus free after using a glutathione-creating undenatured whey protein for approximately 6 months. Showing that the increased levels of glutathione may indeed able to handle the viral and microbial infections.
There has been a good deal of research that show how important glutathione is.
Immune depressed individuals have lower GSH levels when fighting disease. Lymphocytes, cells vital for your immune response, depend on GSH for their proper function and replication. Immunology 61: 503-508 1987.
Cellular depletion of Glutathione has been implicated as a causative, or contributory factor in many pathologies including Parkinson's, Alzheimer's, cataracts, arteriosclerosis, cystic fibrosis, malnutrition, aging, AIDS and cancer (Bounous et al., 1991).
In addition, Glutathione is essential in supporting the immune system, including natural killer cells (Droege et al., 1997) and in the maintenance of T-lymphocytes (Gutman, 1998).
It is known that as we age, there is a precipitous drop in GSH levels. Lower Glutathione levels are implicated in many diseases associated with aging, including Cataracts, Alzheimer's disease, Parkinson's, atherosclerosis and others. Journal of Clinical Epidemiology 47: 1021-28 1994
Antioxidants are well documented to play vital roles in health maintenance and disease prevention. GSH is our cell's own major antioxidant. Why not use what is natural? Biochemical Pharmacology 47:2113-2123 1994
Low GSH has been demonstrated in neurodegenerative diseases such as MS (Multiple Sclerosis), ALS (Lou Gehrig's Disease), Alzheimer's, and Parkinson's, among others. The Lancet 344: 796-798 1994
GSH detoxifies many pollutants, carcinogens and poisons, including many in fuel exhaust and cigarette smoke. It retards damage from radiation such as seen with loss of the ozone. Annual Review of Biochemistry 52 : 711-780 1983.
The liver is the main detoxification organ of the body. In the liver we find very high concentrations of GSH, as it is a major factor in numerous biochemical detoxification pathways. Numerous studies have demonstrated that patients with compromised liver function due to alcohol abuse have significant reduction of GSH in the liver. (Lamestro, 1995)
Glutathione is essential for the maintenance of Vitamin C and vitamin E levels according to Mrtensson. He found that as GSH levels decreased, a corresponding decrease in ascorbic acid and vitamin E followed, which led to systematic mitochondrial death, which in turn leads to a cessation of cellular metabolism.
(It is this mitochondrial death, at first just a dysfunction, that may cause the fatigue found in fibromyalgia and other autoimmune illnesses.)
The over-toxicity in fibromyalgia causes extensive free radical damage. Inhibits cellular function. Disrupts energy production by the mitochondria. Consequently the primary energy the cells produce is anaerobic which leads to extensive lactic acid buildup in the cells. And more toxicity.
Cheney explains that fatigue becomes worse. Pain increases. You feel sicker. Memory suffers as the brain is damaged by toxins and free radicals, and not enough oxygen gets into the brain. Deep brain structures like the hypothalamus eventually are injured and cause problems with virtually every hormone in your body. They lose their ability to rise and fall according to signals or demands from the body making it harder to respond to changing situations. Actual damage to the DNA of the energy producing mitochondria can occur. Further limiting energy.
As toxins cause free radical damage, people with fibromyalgia have low levels of all the free radical scavengers. They get used up dealing with excessive free radicals produced by the excessive toxins.
Heavy Metal Toxicity
Excessive levels of heavy metals may also be common in fibromyalgia. One doctor who tested all his patients, found that over 80% of those with some autoimmune disease had excessive mercury levels. Heavy metals are difficult to get rid of, and are especially harmful as they disrupt cell metabolism. Heavy metals slowly collect in your body, irritate cells and literally can wipe out the immune system. For some people, this could be a major cause of their fibromyalgia.
Most of us have somewhat elevated levels of heavy metals in our system. And it looks like this will get worse. I don't know if this is true, but read that in the spring of '98, Canadians found that their rainfall, "contained concentrations of aluminum particles seven times higher than permitted by Canadian health safety laws.......residents began complaining about severe headaches, chronic joint pain, dizziness, sudden extreme fatigue, acute asthma attacks and feverless 'flu-like symptoms." [Earth Island Journal, Summer 2002, pages 34-35]
Don't those symptoms sound a lot like common fibromyalgia symptoms?
The article talks about how western governments have been seeding the upper atmosphere with superfine heavy metals like aluminum. Called chemtrails, these are an attempt to reflect sunlight and reduce global warming. Unfortunately, they gradually fall to earth.
A Harvard School of Public Health study found that particulates with a diameter less than 10 microns.....pose a serious threat to public health. On April 21, 2001, the New York Times warned: 'These microscopic molecules are able to infiltrate the tiniest compartments in the lungs and pass readily into the bloodstream, and have been most strongly tied to illness and early death, particularly in people who are already susceptible to respiratory problems."
Michael Biamonte, at his health clinic, tested the mercury levels in his patients with various illnesses. He found that 84% of his clients with candida had elevated mercury levels, and that they were 60% higher than normal. The exact same numbers held for clients with parasites. 86% of clients with Epstein Barr Virus had mercury levels elevated by 68%. For those with chemical sensitivities 85% were 70% elevated and found similar numbers for the autoimmune conditions like fibromyalgia. Most other conditions were much lower.
This really opened my eyes to the damage high mercury levels can cause. And to the fact that if you have a fibromyalgia, you have a very good chance of having elevated levels of mercury in your body.
Getting rid of mercury and other heavy metals and biotoxins is confounded by the bile loop. The liver picks up mercury from the bloodstream where cells have put it to be detoxified. However, rather than getting eliminated something else happens. The liver puts it into the bile in the intestines. Unfortunately, this mercury is rapidly absorbed once again into the blood stream with other fluids. So instead of the liver being able to get rid of the mercury it detoxifies, the mercury gets routed back into the body. This is also what happens with the biotoxins produced by micro-organisms in the body. They continually get routed back into the blood from the bile.
Methyl mercury binds anywhere and everywhere, in genetic dependent proportions. Females retain methyl mercury 2:1 over males. It accumulates in the central nervous system, the endocrine system, and every major organ, as well as the body at large. (They may well be the same for these other biotoxins.)
Perhaps the most devastating are the pituitary, thyroid, hypocampus and adrenal gland methyl mercury accumulations. These disruptions help bring on fatigue, mind fog, short term memory loss, concentration problems, and headaches. People can lose their sense of balance. Women can develop early menopause and endodemitriosis from loss of proper hormone regulation.
If the mercury accumulation is in the immune system, the immune system can suffer severe damage. If the brain is the focus, all sorts of mental disorders can occur. If it happens in the liver or kidneys, acute diseases can attack those organs. In muscles, pain. In joints, arthritis.
A natural approach to dealing with this would be using something that contains high levels of alginates. Alginates absorb heavy metals like mercury and other toxins in the intestines where they have been secreted by the bile. As these alginates cannot be absorbed, they are excreted from the body, taking the mercury and other toxins they have absorbed with them.
Organ, Brain and Glandular Damage in Fibromyalgia
Long term overtoxicity, free radical damage, lack of oxygen and nutrients eventually may harm organs, including the brain, and disrupt the hormonal system. Unless this damage can be repaired, a person who has had fibromyalgia for a long time might forever be physically limited. No matter how complete the detoxification.
The keys to body initiated repair are Growth Hormones (GH) and bovine Growth Factors (GF). Growth hormone acts as the "construction workers" who implement the "blueprints" provided by the bovine growth factors. Together they may be able to repair the damage done to the brain and organ systems.
People with autoimmune illnesses like fibromyalgia are very deficient in growth hormones. Greta Moorken's Ph.D. thesis, published in May 2000, showed that people with an autoimmune disease for 18 months had a 50% reduction in growth hormones. When Dr. Cheney tests patients himself, he finds patients who have no growth hormones. He feels that the longer you are ill, the greater the reduction.
He also noted that 9 out of 10 patients who were under 20 got well. While only 1 out of 10 patients over 20 did. And attributed this difference to the fact that people under 20 have a lot more growth hormones so even if they lose some, they have enough to recover.
Lack of growth hormones means serious trouble. GH and stage 4 sleep are interdependent. No growth hormone - no stage 4 sleep; no stage 4 sleep - no growth hormone. And no stage 4 sleep and you wake up in the morning tired and worn out.
Cheney stated that, "At 3 AM the liver comes up and maximally detoxifies. Isn't it interesting that the body spikes growth hormone production not long before the liver needs it? It primes the liver. If you don't get the priming with growth hormones at midnight, then your liver doesn't work and you become more toxic."
Growth hormone deficiency may be related to the symptom of overexercising and not being able to recover for days. It the body is unable to produce growth hormone in response to exercise, serious problems result when you exercise hard.
Growth hormone deficiency is related to a host of other hormone deficiencies as your hormonal system starts to fall apart when you have fibromyalgia. The hypothalamus goes, the thyroid too. Helping to cause a number of the symptoms you get when you have fibromyalgia.
Fibromyalgia Wrap-up
I am not a doctor, nor am I a health care practitioner. And am not a source for diagnosis of or testing for fibromyalgia or any other disease. I am a compiler. Taking information on fibromyalgia and other autoimmune diseases and putting it in a form that makes sense to me, and that, I hope, has made fibromyalgia a little more understandable to you. I am sure there are aspects of fibromyalgia I have not covered. However, the issues covered here may likely be the main issues in fibromyalgia. Hopefully this report has given you enough information about fibromyalgia so you can make more informed decisions about the best way of dealing with fibromyalgia, and take charge of your health.
I addition, I have marketed and sold supplements for years. It was out of this that I learned so much about autoimmune diseases and health in general. It is against the law to sell supplements and say that they treat, prevent or in any way are used to cure a disease. Unless they have been proven in expensive research studies to do so. And as no one is going to spend millions doing that for natural products which cannot be patented. So you do not find any suggestions for treating fibromyalgia in this report.
However, I know a bit about supplements, diet and health, or ill-health for that matter. And can give you some good pointers on what types of foods and supplements are especially good for promoting health. A number of the supplements I find most powerful and health giving are not the usual ones you commonly hear touted.
