Dr Jacob Teitelbaum MDFor years, many of us have dreamt of the day when we would see the headline “EFFECTIVE TREATMENT FOR CHRONIC FATIGUE SYNDROME, FIBROMYALGIA (CFS/FMS), AND MYOFASCIAL PAIN SYNDROME (MPS) DEVELOPED!” We are very excited to report that that day has arrived!
The lead article in a recent edition of the Journal of Chronic Fatigue Syndrome is titled “Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia — the Results of a Randomized, Double-Blind, Placebo-Controlled Study”! After decades of hard work by hundreds of researchers in the field, we have progressed to the point where effective treatment is now available for these illnesses! In our study, over 90 percent of patients improved with treatment.
In the average patient, after two years of treatment, the average improvement in quality of life was 90 percent. Pain decreased by over 50 percent on average. Many patients no longer even qualified for the diagnosis of CFS or fibromyalgia after treatment! Interestingly, many of the same principles for treating fibromyalgia also apply to myofascial pain syndrome
That the vast majority of patients improved significantly in the active group while there was minimal improvement in the placebo group proves two very important things. The first is that these are very treatable diseases. The second is that anyone who now says that these illnesses are not real or are all in your head are clearly both wrong and unscientific. The full text of the studies can be seen at www.vitality101.com.
A new day is dawning in how CFS/fibromyalgia/MPS will be treated. In support of our work, an editorial in the April, 2002 journal of a major multidisciplinary medical society for pain management in United States noted “the comprehensive and aggressive metabolic approach to treatment detailed in the Teitelbaum study are all highly successful approaches and make fibromyalgia a very treatment responsive disorder. The study by Dr. Teitelbaum et al. and years of clinical experience make this approach an excellent and powerfully effective part of the standard of practice for treatment of people who suffer from fibromyalgia and myofascial pain syndrome.”
It is important to recognize that these syndromes can be caused and aggravated by a large number of different triggers. When all these different contributing factors are looked for, and treated effectively, patients improved significantly and often get well!
What is causing these illnesses?
As we noted above, CFS/FMS/MPS is not a single illness. Our study has shown that it is a mix of many different processes that can be triggered by many causes. Some of you had your illness caused by any of a number of infections. In this situation, you can often give the time that your illness began almost to the day. This is also the case in those of you who had an injury (sometimes very mild) that was enough to disrupt your sleep and trigger this process. In others the illness had a more gradual onset. This may have been associated with hormonal deficiencies (e.g. low thyroid, estrogen, testosterone, cortisone, etc.) despite normal blood tests. In others, it may be associated with chronic stress, antibiotic use with secondary yeast overgrowth, and/or nutritional deficiencies. Indeed, we have found well over 100 common causes of, and factors that contribute to, these syndromes.
What these processes have in common is that most of them can suppress a major control center in your brain called the hypothalamus. This center controls sleep, your hormonal system, temperature, and blood flow / blood pressure. When you don’t sleep deeply, your immune system also stops working properly and you’ll be in pain. When we realized this, the myriad symptoms seen in CFS/fibromyalgia suddenly made sense. It also gave us a way to effectively treat you!
Four main categories of problems need to be treated.
A half-century of work by Dr. Janet Travell, the White House physician for Presidents Kennedy and Johnson and author of the Trigger Point Manual showed that the same problems caused by hypothalamic suppression resulted in muscles getting stuck in the shortened position. Chronic muscle shortening then causes myofascial and fibromyalgia pain. As she laid the groundwork for effective treatments these processes, our research team dedicated our published study to her memory. These are the four key areas that need to be treated for Chronic Fatigue syndrome, fibromyalgia and muscle pain to resolve:
1–Disordered sleep. Most patients with these illnesses find that they are unable to get 7-8 hours of deep sleep a night without taking medications. In part, this occurs because hypothalamic function is critical to deep sleep. Unfortunately, many of the most common sleep medications actually aggravate the sleep problems by decreasing the amount of time spent in deep sleep. For patients to get well, it is critical that they take enough of the correct sleep medications to get 8 to 9 hours sleep at night! These medications include Ambien, Desyrel, Klonopin, Xanax, Soma and, if you don’t have Restless Leg Syndrome, Flexeril and/or Elavil. In addition, natural remedies can help sleep. An excellent one (which I developed -Revitalizing Sleep Formula by Enzymatic Therapy — 100 percent of my royalty for all products I develop is donated to charity) includes theanine, Jamaican Dogwood, wild lettuce, valerian, passionflower, and hops. Other natural sleep aids include Calcium, Magnesium, 5-HTP (100-300mg), and melatonin (3/10-1mg). Some patients find that over-the-counter antihistamines such as doxylamine (Unisom for sleep) or Benadryl can also help. In the first six months of treatment, it is not uncommon to sometimes need to take even six to eight different products simultaneously to get 8 hours of sleep at night. After 6-18 months of feeling well, most people can come off of most sleep (and other) medications. I’m starting to believe that, to offer a margin for safety during periods of stress, it may be wise to stay on 1/2 to 1 tablet of a sleep medication for the rest of your life. Your doctor may initially be uncomfortable with this. Nonetheless, our experience with over 2000 patients and 2 research studies have found this approach to be safe and critical to people getting well. When one recognizes that CFS/FMS is a hypothalamic sleep disorder — not poor sleep hygiene — this approach makes sense. Otherwise, it is as if your doctor would immediately try to stop blood pressure or diabetes medicines every time the patient was doing better!
2–Hormonal deficiencies. The hypothalamus is the main control center for most of the glands in your body. Most of the normal ranges for our blood tests were not developed in the context of hypothalamic suppression or these syndromes. Because of this (and for a number of other reasons) it is usually necessary, albeit controversial, to treat with thyroid, adrenal (very low dose cortef; DHEA), and ovarian and testicular hormones — despite normal blood tests! These hormones have been found to be reasonably safe when used in low doses. Growth hormone has also been shown to be helpful in fibromyalgia. We don’t use it because, unfortunately, it can cost over $15,000 a year and is given by injection. Fortunately, there may be a cheaper way to raise your low growth hormone. Most growth hormone is made during deep sleep. This may be another reason why getting 8 to 9 hours of deep-sleep a night can be critical!
3–Unusual infections. Many studies have shown immune system dysfunction in FMS/CFS. Although there are many causes of this, I suspect that poor sleep is a major contributor. The immune dysfunction can result in many unusual infections. These include viral infections (e.g. –HHV-6, CMV, and EBV), parasites and other bowel infections, infections sensitive to long-term treatment with the antibiotics Cipro and Doxycycline (e.g. mycoplasma, chlamydia, Lyme’s, etc) and fungal infections. Although the latter is controversial, both our study and another recent placebo-controlled study found treating with an antifungal to be very helpful with the symptoms seen in these syndromes. Avoiding sweets (stevia is OK) and taking Acidophilus Pearls (healthy milk bacteria –2 pearls twice a day for 5 months) can be very helpful. We often also add prescription antifungals as well.
4–Nutritional supplementation. Because the western diet has been highly processed, nutritional deficiencies are a common problem. In addition, bowel infections can cause poor absorption, and the illness itself can cause increased nutritional needs. The most important nutrients include: a) vitamins — especially the B vitamins (most at 25-50 mg/day), vitamin B12 (50-3000mcg/day), antioxidants (e.g. — vitamin C and E). b) Minerals — especially magnesium, zinc, and selenium and c) amino acids (proteins). To replace the 25 – 35 tablets that people needed to take, I developed a good tasting product that contains 50 key nutrients in 1 capsule and 1 scoop of a good tasting powder taken daily. It is called “ Energy Revitalization System” by Enzymatic Therapy, and is available at health food stores or on my web site.
There are many other treatments available as well. Although space does not allow for a full discussion of these in this article, I discuss them at length in my book “From Fatigued to Fantastic!” and at my www.Vitality101.com website (click on the “Treatment Protocol” link on the bottom left for detailed instructions on treatments for each of these problems).
So can I make my pain go away?
Fibromyalgia and Myofascial Pain and associated nerve entrapments are now very responsive to treatment! In many cases, they usually will improve dramatically and often even go away if you simply get the eight hours of sleep a night I discuss above, take the vitamin powder, take thyroid hormone, and treat the underlying yeast infections. Other patients require the more thorough evaluation and treatment. Localized myofascial pain also requires an evaluation for structural causes.
Aspirin family medications (including ibuprofen) are not very effective for most Fibromyalgia and Myofascial Pain patients. I avoid Tylenol because it can markedly deplete a critical antioxidant (glutathione). Helpful natural treatments include the “End Pain” formula, an herbal remedy that includes Boswellia, Willow bark, and cherry. This combination can be more effective than Celebrex and Motrin and are much safer. I recommend 1-4 tablets three times a day. Although some effect can be seen immediately, improvement continues to build over six months. At that time, the dose can be lowered . The medications I find to be most helpful for myofascial pain include Celebrex (celecoxib) and Skelaxin (which are not sedating) and Neurontin, Baclofen, Zanaflex, and Ultram which can be sedating. Lidocaine patches and creams creating a mixture of medications can also be highly effective for local areas of pain without significant side effects. There are many other medications and other effective ways to treat pain as well. These can be used to help keep you comfortable while we go after the pain’s underlying causes.
How do I go about getting well?
My best-selling book “From Fatigued to Fantastic” has been dramatically updated, It will supply you and your physician with all the information that you need to get treated effectively. It also contains the full text of our, double blind, placebo-controlled study which proves that effective pain treatment is now available.
Because determining which treatments are needed by any given individual and then teaching them how to use them can be very difficult and time consuming (even for doctors that are very skilled in treating these syndromes — a new patient visit in my office usually takes at least four hours of my “one on one” time), I’ve created a sophisticated computer program on my website (www.endfatigue.com) that is like a computerized CFS/Fibromyalgia specialist! It can analyze your history and lab tests to tailor a treatment protocol to your case using both natural and prescription therapies. The good thing about it being a computer program is that it has both the time and ability to guide almost everyone with these syndromes back to health!
In addition, our website also contains:
1 — copies of both of our research studies demonstrating effective treatment for these illnesses. The first one, published in 1995, was an open (not placebo-controlled) study in which over 90 percent of patients improved. The second is the placebo-controlled study I’ve discussed above. Feel free to make copies of this study for your physicians, friends, and for anybody in the news media you think might be interested.
2 — a referral list of over 700 health care professionals (with an area for patient comments) who asked to be listed. If you have (or are) a good health care provider who uses a significant part of our protocol, please encourage them to go on our site and add their name to our list. Because we do not know many of the health care professionals who asked to be on our list, please add your comments about the ones you are familiar with. This will help to let people know who are the “diamonds” versus the “lumps of coal”. I would recommend you begin with the separate list of practitioners have done my 2 day workshops for health care professionals (both physicians and non-physicians).
3–a question, answer, and comments area.
4–a section or you can vote for which of over 200 treatments helped or didn’t help. You can also see how others voted, and their comments.
5 — a shop where you can order supplements or books
6 — articles of interest, and more.
The purpose of our web site is to supply, in one place, all of the resources that you need in order to get well.
How can I get treated if I don’t have much money?
Although some of the treatments for these syndromes can be very expensive, it is often possible to do the treatment protocol in an affordable manner. The key tests that are needed include the blood count (CBC), ESR, general chemistry, free T4 level (thyroid test), vitamin B12, iron, and DHEA-S level. Although many other tests can be very helpful, one can often rely on symptoms alone to make the other treatment decisions. The following medications and supplements can be found fairly inexpensively, and will often be helpful. The vitamin powder can be adequate for basic nutritional support. Flexeril and Elavil, although more likely than some other medications to cause side effects, are inexpensive. Desyrel and Klonopin, in generic form, are also reasonably priced. These four can be very helpful for sleep, and your doctor is likely to be comfortable prescribing the first three of these. Thyroid, cortef, DHEA, and estrogen, can also be found for a fairly low price. For infections, nystatin and tetracycline are also inexpensive. Most drug companies offer medications for free to those who cannot afford them. Although many of the other treatments can often be very helpful, these inexpensive ones may be enough to help you get well.
Dr. Judith Orloff MD