Fighting your physician or insurance company is not a good use of your precious energy. In the long run, you will do better finding physicians who will work with you. Remember, CFIDS, fibromyalgia, and other chronic fatigue states are now treatable illnesses. You will do best using your energy to find a physician who wants to work with you to help you move beyond your disease.
Other Helpful Tools
Treating CFS/FMS can be complicated and time-consuming. In addition to using the worksheet in this book to develop your personalized treatment plan, you can also use the educational programs at www.vitality101.com. Because of the expense involved in creating and maintaining these Web-based computer programs, we do have to charge a modest amount for using these programs. However, we want everyone to be able to access effective treatment, so those on medical assistance (Medicaid) may access the programs for free. Simply e-mail us in the question-and-answer section of the Web site for details.
To help determine whether you want to use these programs, you can expect to find:
1. The long-form program. This will obtain a detailed history from you, including lab test results, and will create:
A complete medical record of your case for your physician (except, of course, for the physical examination—which is usually unremarkable for people with CFS/FMS).
A list of probable factors contributing to the illness in your specific case.
A program of natural remedies (again, tailored to your specific case) that can help you begin a major part of treatment on your own.
A prioritized list of the prescription treatments most likely to help you.
2. The short-form program. If you do not need a complete medical record for your physician, I recommend that you do the “short-form program,” which is less expensive and much easier to fill out. Although it will not create a complete medical record of your case, it will analyze your symptoms and lab tests to create:
A list of probable factors contributing to the illness in your specific case.
Natural remedies (again, tailored to your specific case) that can help you begin a major part of treatment on your own.
A prioritized list of the prescription treatments most likely to help you.
In many ways, the latter program is similar to what you will have created using this book, but it will also analyze your lab tests to further help you determine exactly what you need to do to get well. If your physician is open-minded, you may be able to encourage him or her to give you the treatments you need based on either the computer program or the protocol you filled out while reading this book. Give your doctor a copy of Appendix G: For Physicians and a copy of the research study from my Web site as well, as these documents may encourage your health-care practitioner to work with you.
We have finally reached the point where the care you need is available from well-trained physicians. Won’t it be nice to have a doctor who knows more than you do?
Important Points
It is best to see a physician who is an expert in treating CFS and fibromyalgia, as these are complex syndromes.
The Fibromyalgia & Fatigue Centers is a national chain of treatment facilities whose physicians are expertly trained in treating these syndromes. They are familiar with everything in this book and much more. For information, see www.fibroandfatigue.com.
There is a computerized educational program available at www.vitality101.com that can analyze your symptoms and blood tests to help you determine what treatments are most likely to help you get well.
In addition, you can sign up for a free e-mail newsletter at www.vitality101.com that will keep you up to date on the newest developments in treating CFS, fibromyalgia, and pain. There is a second newsletter that will also update you on using the best of natural and standard medicine to maintain optimal health.
Conclusion
“The person who says it cannot be done should not interrupt the person doing it.”
—Chinese proverb
Old mind-sets are often difficult to change. It took many years for chronic fatigue syndrome and fibromyalgia to be recognized as real and physical processes. As time goes on and more physicians become aware of these illnesses, patients will no longer have to accept being labeled crazy because of a few physicians’ ignorance.
We are entering the next stage.
Chronic fatigue syndrome and fibromyalgia are now treatable. This simple fact needs to be demonstrated and reported over and over again to become accepted by physicians. Over time, it is hoped that even more physicians will learn how to treat CFS/FMS and how to encourage and support their fatigue patients. Others, sadly, will continue to keep their heads stuck in the sand. It is all right to ignore these doctors who ignore you. You will be better off spending your energy tending to and taking responsibility for your physical and emotional needs so that you can attain and then maintain optimum health. This is especially true because you can now get the help you need.
Your illness may have been treated as being “all in your head” for a long time, but do not fall into the trap of ignoring your emotional and psychological needs. Many CFS patients have been overachievers in an effort to compensate for childhood low self-esteem. Love yourself for having had that low self-esteem, love yourself for having been an overachiever, then let go of both these experiences. Take the “shoulds” placed on you by your family, and society and drop them. Love yourself for having had them, and then love yourself for letting go of them. Although CFS is devastating, even this dark cloud has a silver lining. It has taught you what you do not have to do, and has given you space to explore who you truly are. You have earned the right to be yourself.
As you start feeling better, slowly add activities to your life that make you feel good. If you do something that makes you feel poorly, stop doing it. Joseph Campbell, a world-renowned teacher of the mythology of and paths for personal growth in many diverse cultures, was asked how people can stay true to themselves. Put succinctly, his advice was: “Follow your bliss.” Perhaps a “should” led you to become an accountant, doctor, or lawyer, but your bliss truly lies in being an artist, mother, poet, or dancer. Perhaps the opposite is true. If you do what makes you feel happy and excited, you will get yourself on the right track. Whatever you do, however, do not try to make up for lost time by trying to do too much. The few lingering symptoms of your illness will effectively let you know when you are pushing too hard. Recognize that your illness may have been a valuable teacher.
As your chronic fatigue resolves and you begin to feel well again, let your friends, the media, and your former physicians (most CFS/FMS patients have seen quite a few) know. Because in the past there was no single expensive drug for the treatment of CFS/FMS, millions of pharmaceutical dollars had not yet been spent on publicity. For better or worse, this is changing as drug companies realize that we are a big market. Even the CDC (Centers for Disease Control) is spending millions of dollars on an advertising campaign to teach doctors and the public that CFS/FMS are real and devastating diseases. These changes will help to insure that those who have suffered with the illness will be better able to get the understanding and help they need.
I know it’s been a long, hard road for you but, as the song says, “The times they are a-changin’!”
It’s time to get your life back NOW!
APPENDIX A
Study Abstracts of Effective Treatment Modalities for Chronic Fatigue Syndrome and Fibromyalgia
The full text of studies #1 and 3 can be seen at www.vitality101.com.
Study #1: Published as lead article, Journal of Chronic Fatigue Syndrome, Vol. 8, No. 2, 2001, pp. 3–24
Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia—a Randomized, Double-Blind, Placebo-Controlled, Intent-to-Treat Study
Jacob E. Teitelbaum, M. D.; Barbara Bird, M. T., CLS; Robert M. Greenfield, M. D.; Alan Weiss, M. D.; Larry Muenz, Ph. D.; Laurie Gould, B. S.
No outside funding.
ABSTRACT. Background: Hypothalamic dysfunction h
as been suggested in fibromyalgia (FMS) and chronic fatigue syndrome (CFS). This dysfunction may result in disordered sleep, subclinical hormonal deficiencies, and immunologic changes. Our previously published open trial showed that patients usually improve by using a protocol that treats all the above processes simultaneously. The current study examines this protocol using a randomized, double-blind design with an intent-to-treat analysis.
Methods: Seventy-two FMS patients (thirty-eight active; thirty-four placebo; sixty-nine also met CFS criteria) received all active or all placebo therapies as a unified intervention. Patients were treated, as indicated by symptoms and/or lab testing, for: (1) subclinical thyroidal, gonadal, and/ or adrenal insufficiency; (2) disordered sleep; (3) suspected NMH; (4) opportunistic infections; and (5) suspected nutritional deficiencies.
Results: At the final visit, sixteen active patients were “much better,” fourteen “better,” two “same,” zero “worse,” and one “much worse” versus three, nine, eleven, six, and four, respectively, in the placebo group (p<.0001, Cochran-Mantel-Haenszel trend test). Significant improvement in the FMS Impact Questionnaire (FIQ) scores (decreasing from 54.8 to 33.2 versus 51.4 to 47.7) and Analog scores (improving from 176.1 to 310.3 versus 177.1 to 211.9 [both with p<.0001 by random effects regression]), and tender point index (TPI) (31.7 to 15.5 versus 35.0 to 32.3, p<.0001 by baseline adjusted linear model) were seen. Long-term follow-up (mean 1.9 years) of the active group showed continuing and increasing improvement over time, despite patients being able to wean off most treatments.
Conclusions: Significantly greater benefits were seen in the active group than in the placebo group for all primary outcomes. Using an integrated treatment approach, effective treatment is now available for CFS/FMS.
Study #2: Published in Journal of Alternative and Complementary Medicine, November 1, 2006; 12(9): 857–62.
The Use of D-ribose in Chronic Fatigue Syndrome and Fibromyalgia: A Pilot Study
J. E. Teitelbaum, C. Johnson, and J. S. Cyr
Objectives: Fibromyalgia (FMS) and chronic fatigue syndrome (CFS) are debilitating syndromes that are often associated with impaired cellular energy metabolism. As D-ribose has been shown to increase cellular energy synthesis in heart and skeletal muscle, this open-label uncontrolled pilot study was done to evaluate whether D-ribose could improve symptoms in fibromyalgia and/or chronic fatigue syndrome patients.
Design: Forty-one patients with a diagnosis of FMS and/or CFS were given D-ribose, a naturally occurring pentose carbohydrate, at a dose of 5 g t. i. d. for a total of 280 g. All patients completed questionnaires containing discrete visual analog scales (VAS) and a global assessment pre-and post-D-ribose administration.
Results: D-ribose, which was well tolerated, resulted in a significant improvement in all five VAS categories: energy; sleep; mental clarity; pain intensity; and well-being, as well as an improvement in patients’ global assessment. Approximately 66 percent of patients experienced significant improvement while on D-ribose, with an average increase in energy on the VAS of 45 percent and an average improvement in overall well-being of 30 percent (p < 0.0001).
Conclusions: D-ribose significantly reduced clinical symptoms in patients suffering from fibromyalgia and chronic fatigue syndrome.
Study #3: Published in Journal of Musculoskeletal Pain, Vol. 3, No. 4, 1995, pp. 91–110
Effective Treatment of Severe Chronic Fatigue: A Report of a Series of Sixty-four Patients
Jacob Teitelbaum, Barbara Bird
ABSTRACT. Objectives: To determine the underlying causes of severe chronic fatigue states and the effect of concurrently treating the underlying etiologies.
Methods: Sixty-four patients with a median of three years of severe fatigue, which markedly limited their activity, were studied. These patients were characterized by a mix of symptoms including recurrent sore throats, swollen glands, increased thirst, sleeplessness, achiness, and poor memory and concentration without apparent cause. They presented in our office during 1991–1993 and were selected by consecutive sampling. The patients were assessed and treated for the processes noted below.
As fatigue is purely subjective, the patients determined whether they showed worsening, no significant change, significant but incomplete improvement, or much improvement [that is, fatigue no longer a problem].
Results: Forty-six patients had at least three or more contributing problems. Fibromyalgia was present in forty-four patients. Overt or subclinical hypothyroidism or hypoadrenalism was suspected in thirty and forty patients, respectively. Superinfections associated with immune dysfunction (e. g., bowel parasites or yeast overgrowth) were suspected in thirty cases. Improvement with micronutrient supplementation was noted.
Depression, anxiety/hyperventilation, and situational stresses were considered to be the primary processes in four, four, and three patients, respectively.
Treatment resulted in complete resolution of fatigue in 57 percent and significant but incomplete improvement in 39 percent of the patients. Improvement was seen at a median time of seven weeks.
Conclusions: Severe chronic fatigue states are multifactorial processes that, in many patients, respond well to treatment.
Originally published in the Journal of Musculoskeletal Pain 3 (1995): 91–110. Used courtesy Haworth Press.
APPENDIX B
The SHIN Treatment Worksheet
Treatment Protocol “Short Form”—CFS/FMS
Many of the products mentioned below can also be ordered from 800–333–5287 or www.vitality101.com.
Below is a listing of the more common treatments used in treating CFS/ FMS. If you would like, a more comprehensive form with more than 280 options can be seen and printed out at www.vitality101.com. I would use this list as a record of your treatments and have it with you for follow-up/ phone visits. Put a line through the number in front of any treatment you stop and note the reason stopped and date. Put the date started in front of the other treatments. Although it can take six weeks to see a treatment’s benefits, most of the medications’ side effects will usually occur within the first few days of starting a treatment. Except for treatments #1 through 10, which can all be started in the first one to three days, add in one new treatment each one to three days. If a side effect occurs, stop the last two or three treatments for a few days and see if it goes away. If the side effect is acute and worrisome, call your family doctor (or go to the ER) immediately. Do not get pregnant on treatment or drive if sedated. It is normal for a woman’s periods to be irregular during the first three to four months of treatment. On average, it takes three months to start feeling better. You can begin to slowly taper off most treatments when you feel well for six months. Stop things one at a time (e. g., one pill every one to two weeks) so you can see if you still need it. If needed, however, most of these can be used long term, although this is usually not necessary. Some prescriptions can be obtained at a much lower cost from Consumers Discount Drug Company (323-461-3606). Another good source for generic prescription drugs is www.costco.com—click on “Pharmacy.” Do not take any treatments below that you are allergic to or that have caused prohibitive side effects. Prescription items have “Rx” after their names. If a recommended(i. e., checked off) treatment has a double asterisk (**) by the number, it is a “most important” treatment; if it has a single asterisk (*), it is an important treatment; and no asterisk means the treatment is helpful but not critical. If you choose to simplify your program, you can begin taking just the double-asterisked items followed by the single-asterisked items and then no asterisked items that are checked off.
We have listed natural/over-the-counter alternatives for most prescription therapies that can be substituted for and/or added to the prescription ones. We often recommend products made by Enzymatic Therapy, Ultraceuticals, or Integrative Therapeutics (ITI), as these have excellent potency and purity. Dr. Teitelbaum does not accept money from any pharmaceutical or natural products companies whose products he recommends. He has directed that all
his royalties for products he makes be donated to charity. Only the items that have been checked off as you read this book are the ones recommended for you.
Nutritional Treatments
____1.
**Energy Revitalization System—Powder (by Enzymatic Therapy and Integrative Therapeutics): Half to one scoop a day (as feels best) blended with milk, water, or yogurt with one capsule of the included Daily Energy B-Complex (also available separately). This gives a solid foundation for nutritional support, and replaces more than thirty-five tablets’ worth of supplements. If gas or diarrhea occurs, mix the powder with milk and/or start with a lower dose and work your way up to the dose that feels best, or divide the daily dose into smaller doses and take two to three times a day (½ a scoop a day is often adequate; use the dose that feels best to you). Be sure to take #10 (ribose) with it for optimal support.
____2.
*Complete GEST Enzymes (Enzymatic Therapy)/Similase (ITI): Two capsules with each meal to help digest your food properly. If you have ulcers or if the GEST enzymes irritate your stomach, begin with GS Similase.
From Fatigued to Fantastic! Page 33