I Have Fibromyalgia/ Chronic Fatigue Syndrome, but it Doesn't Have Me!

    Source: Reproduced with permission. The Fibromyalgia Treatment Center (FTC) www.fibromyalgiatreatment.com


    Fibromyalgia is a legitimate, common entity. It is a cyclic and progressive disease which affects millions of patients, primarily women, regardless of race.  Manifested by multiple symptoms that may initially last only a few days, it eventually progresses to affect multiple areas and bodily systems until patients simply cycle from bad days to worse days.  

    Though patients feel more symptoms and get sicker over time, fibromyalgia is considered non-progressive because there is no tissue damage associated with the disease. Fibromyalgia is a confusing word for a confusing illness.  The name means pain in muscles and tissues but pain is just the tip of the iceberg when it comes to the list of symptoms.  

    Some patients with fibromyalgia experience more fatigue than pain. In fact, a system-wide dearth of energy is the common denominator of all the many symptoms of the disease.
     
    The World Health Organization recognized Fibromyalgia as a real illness, accepting the American College of Rheumatology’s criteria for diagnosis, in 1991.  Prior to that time it had been known by other names including Fibrositis and Rheumatism.  At this time the cause is unknown and there are no completely accepted treatments though many drugs are prescribed to ease the symptoms.
     
    There are no diagnostic laboratory tests for fibromyalgia. It is called a syndrome meaning it is distinguished by a collection of symptoms, There is a “Fibromyalgia Test” on the market which measures a certain number of these cytokines, but it is expensive and not universally accepted.  It is not covered by medical insurance and its merit is currently being debated. (http://www.fmperplex.com/2013/02/25/junk-science-junk-ethics/).  We are part of a research team at City of Hope currently busy identifying genes that cause fibromyalgia. http://www.cityofhope.org/shively-research-fibromyalgia-research. . Our recent research paper reported several abnormal cytokines that change during the course of our treatment. [1]   

         

    Patients are often referred from one doctor to another, and may be told that they have chronic fatigue, systemic candidiasis, myofascial pain, irritable bowel, or vulvar pain syndrome to name a few.  Too often, physician and patient focus on symptoms and fail to perceive the much larger problem. These dead-end diagnoses result in the treatment of symptoms which is only partially effective and at the same time ignores the underlying cause and the disease that continues to worsen over time.  Unlucky patients are still told that there is nothing wrong with them and labeled as hypochondriacs.  

     

    Though it is now less common, there are still physicians who believe fibromyalgia is a wastebasket diagnosis and not a real entity. It must be said that at this time if there is a commonly accepted treatment protocol it is polypharmacy: heaping medications upon medications and adding more to combat side effects.  For many patients this is simply an unacceptable life sentence. 

    The American College of Rheumatology criteria recommends searching for tender points at eighteen predetermined sites on the body to establish a diagnosis of fibromyalgia. Finding eleven or more will result in a positive diagnosis.  However some patients simply have higher pain thresholds so while they complain of body aches or stiffness, they focus mainly on fatigue and cognitive impairments. These so-called Chronic Fatigue Syndrome patients suffer from the same metabolic abnormality. Since pain perception varies greatly, we urge physicians to seek objective evidence instead of the purely subjective response to variably tender points. The confirmation of fibromyalgia is far more secure when using our method of palpation that we call mapping (see here for an example). In response to this criticism of tender points, some doctors will now also question patients from a list of symptoms and may make the diagnosis based on that.  Still others criticize the loosening of diagnostic criteria as an excuse for drug companies to sell more of the three drugs currently approved for fibromyalgia. Drug company recognition has been a double-edged sword.

    Fibromyalgia has no set symptoms and many combinations from the following list are interwoven:
         

    Central Nervous System: Fatigue, irritability, nervousness, depression, apathy, listlessness, impaired memory and concentration, anxieties and suicidal thoughts. Insomnia and frequent awakening due to pain result in non restorative sleep.
     

    Musculoskeletal: Pain and generalized morning stiffness could arise from muscles, tendons, ligaments and fascia of the shoulders, neck, entire back, hips, thighs, knees, ankles, feet, inner and outer elbows, wrists, fingers, and chest. Injured or old operative sites are commonly affected. Though fibromyalgia is described as a “non-articular” disease many know better: Joint pains with or without swelling, redness and heat are frequent. The litany includes foot or calf cramps, numbness and tingling of the face or extremities.


    Irritable Bowel: (Often called leaky gut, spastic colon or mucous colitis). Symptoms include nausea (often brief, repetitive waves), indigestion, gas, bloating, pain, cramps, constipation alternating with diarrhea and sometimes mucous stools.
     

    Genitourinary: Common are pungent urine, frequent urination, bladder spasms, burning urination (dysuria) with or without repeated bladder infections and interstitial cystitis. Vulvodynia (vulvar pain syndrome) includes vaginal spasms, irritation of the vaginal lips (vulvitis) or opening (vestibulitis) and painful intercourse (dyspareunia). It typically mimics a yeast infection but without the cottage-cheese discharge. Intense PMS and uterine cramping are common. Symptoms of fibromyalgia are worse premenstrual.


    Dermatological: Various rashes may appear with or without itching: Hives, red blotches, itchy bumps or blisters, eczema, seborrheic or neurodermatitis, and rosacea. Nails are often brittle and of poor quality and hair falls out prematurely. Strange sensations are common such as cold, heat (especially palms, soles and thighs), crawling, electric vibrations, prickling, super-sensitivity to touch, and flushing that is sometimes accompanied by sweating.


    Head, Eye, Ear, Nose, and Throat: Headaches (migraines), dizziness, vertigo (spinning) or imbalance; dry eyes as well as itching and burning with or without sticky or crusty discharge upon awakening; blurred vision; nasal congestion and post-nasal drip; painful, burning tongue, mouth and abnormal tastes (scalded, bad or metallic); ringing in the ears (tinnitus) or lower-pitched sounds; ear and eyeball pain; sensitivity to light, sounds and odors.


    Miscellaneous Symptoms: Weight gain; low grade fever; lowered immunity to infections; morning eyelid and hand swelling from fluid retention that gravitates to the lower extremities by evening where it stretches tissues causing the restless leg syndrome.

     

    Hypoglycemia Syndrome: This is a separate entity. Thirty percent of female and twenty percent of male fibromyalgics suffer both conditions (fibroglycemia). Symptoms greatly overlap those of fibromyalgia, but sugar craving accompanied by tremors, sweating, anxiety, panic attacks, heart pounding, faintness, and frontal headaches, especially if hunger induced, are solid clues to the diagnosis. Hypoglycemics must follow a prescribed diet or recovery will not be complete even with the reversal of fibromyalgia. (See Hypoglycemia for more information.)

    Trauma, infection or stress can aggravate or tip susceptible individuals into fibromyalgia but are not the basic causes. It is generally accepted now as an inherited disease and preliminary results from our research team at City of Hope support this belief.  

     

    We have treated family members that spanned three generations including four two-year-olds as well as patients who became symptomatic only in their seventies. This age spread strongly suggests a multi-genetic disease in various combinations. Boys and girls suffer equally before puberty but females predominate (85% to 15%) thereafter. Forty percent of our patients recall "growing pains" in childhood that disappeared during the true growth spurt of puberty. Untreated fibromyalgia ultimately leads to a "tartar of joints" that we recognize as osteoarthritis.

    The FDA has approved three drugs to treat some symptoms of Fibromyalgia: Lyrica, Cymbalta, and Savella.  Each of these was initially used for other conditions but was shown to be better than placebo (no medications at all) in reducing pain.  Each has a number of side effects and many patients cannot tolerate them.  A group called Cure Together polled 1,144 patients with Fibromyalgia to rate these drugs, among other treatments. They were surprised to find that patients rated Lyrica, Cymbalta, and Savella as making their Fibromyalgia worse, not better, rating rest and heat as more effective. 

    Fibromyalgia is a chronic disease and will require life-style changes.  The good news is that you can still lead a full life and control most of your symptoms at least most of the time.  You can turn your health around.  It will require taking charge of your health and getting into the best possible shape that you can and taking care of yourself each and every day. 

    While searching for medications for fibromyalgia you have probably already come across a treatment using a medication called guaifenesin that has proven effective for many fibromyalgics. Guaifenesin has been on the market many years. To date there has been no successful double blinded study of its use in fibromyalgia (you can read about this in other places on this site), but subsequent published peer-reviewed research has shown its effect on the cytokines known to be abnormal in patients. 

    The guaifenesin protocol is the work of R. Paul St. Amand M.D., an endocrinologist in Marina del Rey, CA. He has dedicated more than fifty years of his life to treating fibromyalgia in thousands of patients. He himself as well as several members of his family suffer from the illness.

    There is hope! The purpose of this website is to introduce you to his protocol, our work, and to support and help those fibromyalgia patients who are looking for a treatment to reverse their disease, who are tired of partially effective medical band-aids plastered on their symptoms.


    Addendum:

    Fibromyalgics with hypoglycemia must follow a low carbohydrate diet as prescribed, or they will not feel better, even when guaifenesin clears the lesions of fibromyalgia. Though not mandatory, fibromyalgics with carbohydrate craving will get a "jump-start” with similar dietary modifications for the first thirty days of treatment. Carbohydrates (sugars and starches) release insulin. This hormone not only induces kidney reabsorption of phosphate but also drives it into various cells and intensifies symptoms. Elimination of the following foods prevents the wide fluctuations of blood sugar that allows a surge in energy and lessens bouts of fatigue.

    Foods to Avoid Strictly:

    All alcohol, dried fruits, fruit juice, baked beans, refried beans, lima beans, barley, black-eyed peas (cowpeas), lentils, garbanzos, rice, bananas, pasta (all types), flour tortillas as in burritos, tamales, corn, potatoes, sweets of any kind including dextrose, glucose, hexitol, maltose, sucrose, honey, fructose, corn syrup, starch. Caffeine and alcohol are permitted for those without hypoglycemia.
     

    1.Zang, Z, Cherryholmes, G, Mao, A, Marek, C, Longmate J,

    Kalos, M, St Amand, RP Shivley JE: High plasma levels of MCP-1, and Eotaxin provide evidence for an immunological basis of Fibromyalgia.  J of Ex Bio Med 2008 Oct.

    Course of our treatment. [1]   

        

    © 2019 Chantal K. Hoey-Sanders. All rights reserved.