Chronic fatigue syndrome (CFS) and its painful cousin fibromyalgia (FMS) have been gaining increasing acceptance and public awareness, in large part because of the pharmaceutical industry's spending $210 million a year advertising the three new FDA-approved medications for fibromyalgia – Lyrica, Savella, and Cymbalta. Fortunately, natural remedies offer far more help, making these illnesses very treatable.
Let's begin with the basics, and then move into what's new.
What are CFS and Fibromyalgia?
Basically, in most people these two names represent the same process, an energy crisis wherein people are spending more energy than they are able to make. When this gets severe enough, they essentially "blow a fuse/trip a circuit breaker" called the hypothalamus. This major control center in the brain controls:
- sleep, so that people have severe insomnia despite their exhaustion;
- hormonal function, via the hypothalamic pituitary axis. This results in widespread hormonal deficiencies, including thyroid, adrenal, ovarian, and testicular – despite normal blood tests;
- autonomic function. So people have low blood pressure and orthostatic intolerance (discussed more below), dysfunctional bowel function and peristalsis, rapid pulse, and sweating abnormalities;
- temperature regulation. This results in 98.6 being a fever, with most people having low temperatures.
In addition, a critical point to remember is that it takes more energy for muscles to relax than to contract. During an energy crisis, muscles will get locked in the shortened position, contributing to pain. Unrecognized muscle pain (unrecognized because most physicians are not trained in myofascial pain) is one of the major causes of chronic pain. Structural treatments such as chiropractic and other manipulation, massage, and putting a needle into the trigger point (the tender belly of the shortened muscle) will only give short-term relief in many cases unless the energy/metabolic needs of the muscles are also met. This can be done easily with the approaches that we will discuss in this article, and combining these with structural therapies can make treatments remarkably effective, with long-lasting results.
Another key component is the immune dysfunction, and new research is opening up new treatment possibilities in this area as well, while tying immune dysfunction to pain.
Making the Diagnosis
For years, the diagnosis of fibromyalgia has been based on the American College of Rheumatology (ACR) diagnostic criteria requiring 11 of 18 tender points be present. As most physicians had absolutely no idea how to do a tender point exam, this had limited utility. Fortunately, the ACR has updated the diagnostic criteria, eliminating the tender point exam (which is now optional) and making the criteria much more reliable and user-friendly. Basically, they boil down to what we have been saying for decades. If patients have the paradoxical combination of being unable to sleep despite being exhausted, along with brain fog, they have CFS. If they also have widespread pain, they have fibromyalgia.
Click here for 2010 ACR Fibromyalgia Diagnostic Criteria (.pdf)
Although numerous tests are being proposed for the diagnosis of fibromyalgia, none have gained widespread acceptance. As the combination of symptoms discussed above is very effective at determining who is likely to improve with treatment, having a test will add little clinically. What it will add is credibility and acceptance for people with the illness. To put it in historical perspective, multiple sclerosis used to be called hysterical paralysis, and lupus was simply considered a neurosis common to women, until a reliable test was found for these conditions.
A Simple 'Poor Man's Test' for Orthostatic Intolerance (.pdf)
What Causes Fibromyalgia?
Just as there are hundreds of ways to trip a circuit breaker in your home, there are countless ways to trigger the energy crisis of fibromyalgia. Asking the simple question, did your illness start gradually or suddenly? can offer clues to the cause. Some of the most common causes include:
- acute infections
- toxin exposures
- autoimmune and inflammatory illnesses (e.g., lupus)
- hormonal problems (e.g., low thyroid, adrenal, estrogen, and testosterone)
- severe physical or emotional stress
- disordered sleep
In most people, there will be a mix of processes as one problem triggers and cascades into another. This is not an illness for which there is a single magic bullet. To get people well, it takes an integrated treatment approach.
Getting People Well
Numerous treatments can be helpful, making this a very confusing topic. This can be simplified by using the mnemonic SHINE:
Sleep: Use a mix of natural support and low dose medications to get people 8 hours of deep sleep a night. Natural options that can be helpful include melatonin ½ to 1 mg, and herbal mixes ( I recommend the Revitalizing Sleep Formula, a mix of 6 herbs). Rule out sleep apnea and restless leg syndrome, which can be screened for by videotaping during sleep. Restless leg syndrome can be improved by giving iron to bring the ferritin blood level over 60, optimizing thyroid function, and supplementing with magnesium.
Hormonal support: Optimize thyroid, ovarian and adrenal function based predominantly on symptoms, and only secondarily using the lab results. For example, the most reliable way that I have found to see if somebody with fibromyalgia needs adrenal support is to ask the simple question, do you get very irritable when hungry? If both the person and her spouse/friend quickly nod their heads, she needs adrenal support. Optimize testosterone in both men and women.
Infections/Immunity: There are literally dozens of infections that have been implicated in CFS and fibromyalgia, and standard testing is notoriously unreliable for almost all them. I call this illness "the infection of the month club," as literally dozens of infections have been implicated. Although I do recommend some testing, overall the decision to use natural or prescription immune boosters, antibiotics, and antivirals is based predominantly on symptoms. I do recommend that everybody who has fibromyalgia be presumptively treated for candida.
Nutritional support: People often ask, what vitamin, minerals, and amino acids do I need? The answer? All of them! Instead of giving people 35 nutrient pills to take each day, I have them use a high-potency vitamin powder (the Daily Energy Enfusion by Integrative Therapeutics) to which they add a 5 g scoop of ribose (Corvalen by Douglas Labs). I have them take a single daily tablet of a high potency omega-3 (EurOmega 3 by EuroMedica), plus coenzyme Q10 200 mg. This one drink and two pills a day give outstanding nutritional support (for most everyone) without taking a handful of pills. In addition, I have people avoid sugar and increase salt and water intake, while eating a high-protein whole-foods diet.
Exercise as able: If people with fibromyalgia push themselves too hard, they often find themselves bedbound the next day with postexertional fatigue. If they're afraid to exercise because of this, they can become horribly deconditioned – dramatically worsening their illness. Because of this, I add the words "as able" after "Exercise." Simply have the person began a comfortable walking program, increasing by 50 steps a day as able (a $15 pedometer is very helpful, and acts as a wonderful biofeedback tool).
Most of the metabolic treatments for fibromyalgia will fit into this approach. Other treatments such as mind-body issues (essentially learning to say no to things that feel bad and yes to things that feel good), structural and energy treatments, and detoxification and desensitization are very complementary to this approach.
Our double-blind, placebo-controlled study showed that 90% of people improved with an average 75% increase in quality of life at 3 months and 90% at 2 years (p < 0.0001 vs. placebo for all 4 outcome measures) using the SHINE Protocol.
Since the last update, there have been a number of new advances.
In diagnosis, research by Drs. Sarah Myhill in the UK and Ron Hunninghake of the Riordan Clinic has shown reproducible patterns of biochemical energy deficiencies. It is possible that in the future these may be confirmed as having the sensitivity and specificity to be accepted as reliable tests for diagnosing fibromyalgia. In addition, other tests, including testing for specific cytokine patterns, are also showing promise.
In pathophysiology, much attention has been focused on the brain being a source for pain (called central sensitization). Much of this focus is occurring because this is what the three new medications treat.
More impressive has been the research showing that neuropathic pain frequently accompanies the muscle/myofascial pain component as does autonomic dysfunction. Studies also showed decreased red blood cell mass and decreased blood volume. As the hematocrit is the ratio of blood cell mass to blood volume, if both are decreased then one will have a normal hematocrit despite a marked anemia – exactly as occurs in CFS and fibromyalgia. In addition, elegant work by Dr. Paul Cheney is exploring the cardiac dysfunction and its consequences in CFS and fibromyalgia. This is an area near and dear to his heart, as he has had a heart transplant!
Orthostatic intolerance with low blood pressure and drops in blood pressure with increased pulse on standing (called postural orthostatic tachycardia syndrome [POTS] and neurally mediated hypotension [NMH]) along with changes in heart rate variability all point to autonomic dysfunction as being quite significant. In fact, a recent study of people with POTS showed that most of them really had chronic fatigue syndrome. Fortunately, doing a several thousand dollar tilt table test is not needed to make the diagnosis. Below is a simpler approach.
Of special interest to me is research showing a relationship between the immune dysfunction, neuropathic pain, and autonomic dysfunction being found in fibromyalgia. Researchers have found that over 50% of people with fibromyalgia have what is called small fiber neuropathy (SFN). Other researchers were finding an increased prevalence of IgG1 and 3 subtype antibody deficiencies. Interestingly, both of these respond well to intravenous gamma globulin (IVIG). Although most people do not need this aggressive treatment, it has been very helpful in the 5% to 15% of the sickest people who do not respond adequately to other treatments, and especially in those who have severe autonomic dysfunction with low blood pressure and orthostatic intolerance; that is, people who are often bedridden. Dr. Mark Sivieri in Laurel, Maryland, brought this to my attention, and is doing outstanding clinical and research work in exploring the effectiveness of IVIG and the interrelations between IgG subtype deficiency, small fiber neuropathy, dysautonomia, and response to IV gamma globulin. I suspect that he will have some very interesting findings to release over the coming years.
Fortunately, most people do quite well without needing to use high-dose IV gamma globulin. Studies have confirmed that other simple treatments can add additional benefit. Some of these are old friends that holistic doctors have long known about, and others a bit more surprising. These include:
- A second study confirming that low-dose naltrexone was very helpful in fibromyalgia. A dose of 3 to 4.5 mg is given at bedtime (higher doses become ineffective). Give it 3 months to see the effect. It is readily available from holistic pharmacies, and is low cost and safe. For more information see www.lowdosenaltrexone.org;
- Our second study of 257 people with fibromyalgia at 53 different health practitioners was published showing an average 61% increase in energy-giving ribose 5 g 3 times a day for 3 weeks. Sleep, pain, cognitive function, and overall well-being also improved markedly. The dose can be lowered to twice a day after 3 weeks. Ribose is available as Corvalen from Douglas Labs;
- Another study showed that giving coenzyme Q10 at 300 mg a day improved overall well-being in fibromyalgia. Interestingly, research is also showing marked cardiac benefits for ribose and coenzyme Q10, showing the importance of impaired energy production in cardiac disorders as well.
- A study by Neil Nathan, MD, and the late and brilliant Rich Van Konynenburg, PhD, showed that treating methylation defects in fibromyalgia can be very helpful. For more information, I recommend Dr. Nathan's new book Healing Is Possible.
In addition to the studies above, there were three simple, yet clinically powerful, studies on pain relief.
One study was conducted by Emine Kara Kiyak, PhD, at the School of Nursing at Ataturk University in Turkey. She studied 50 people with fibromyalgia, dividing them into two groups. Starting in winter, one group wore woolen underwear, or "long johns" — underwear that covered the body from the shoulders to the thighs. (It was a combination of 75% merino wool and 25% acrylic fiber). They also used woolen bedding, a woolen bed liner, a woolen pillowcase, and a woolen quilt. Before the study, the patients using wool had worn cotton underwear and used synthetic bedding materials. After six weeks, those wearing and sleeping in wool reported a dramatic 84% decrease in pain as well as lessening fatigue.
Why does wool work? "We think the reason for the lower pain level and reduction in the tender point count was the warmth of the wool, which led to increased local blood flow, which in turn reduced pain," said Kiyak. In addition, wool wicks away moisture, keeping your muscles from getting chilled. The reason for less morning tiredness and fatigue? "The patients maintained a constant and balanced body temperature during sleep because of wool bedding, and experienced more restorative sleep," she said. So wearing wool long johns and using woolen sheets during the winter is far more effective than most pain medications!
A second study, published in the New England Journal of Medicine, showed tai chi to be helpful in decreasing fibromyalgia pain and improving function.
A third small study, which caught me by surprise, was done by Dr. Forest Tennant of the Veract Pain Center in West Covina, California, and editor of the journal Practical Pain Management. This study included people with severe chronic pain, requiring the equivalent of 500 to 1500 mg of morphine a day (a massive dose). Giving them hCG (without any diet changes) resulted in about two-thirds of them being able to cut their morphine dose by an amazing 30% to 50%. We offered hCG to a few of our people with the most severe fibromyalgia pain, and most of them also had a marked decrease in pain. This was also confirmed in a repeat study by Tennant. He recommends the hCG drops, 125 units SL a day, increasing the dose to the optimal level (up to 750 units a day) and giving it 3 months to work. This treatment has been a remarkable benefit for many people.
New Resource: The Fatigue and Fibromyalgia Practitioners Network
There are literally millions of people with fibromyalgia desperately seeking practitioners who know how to treat them, with many coming to our website referral list. Launched in September 2013, the Fatigue and Fibromyalgia Practitioners Network ( FFPN) will:
Our focus is how to supply scientific, clinically powerful, and easy to learn and use information on getting people well using what Dr. Hugh Riordan called "comprehensive medicine," combining the best of standard and holistic therapies. For more information, see www.endfatigue.com, which also has a free Energy Analysis Program available. This will analyze people's symptoms and lab tests to determine the causes of their fatigue, and tailor a treatment regimen to optimize energy. We have entered a time when, by combining the best of multiple modalities, people with fibromyalgia can now be effectively treated. Things are looking quite optimistic for this condition!
- train any interested health practitioner (prescribing or nonprescribing) how to easily and effectively evaluate and treat people chronic fatigue syndrome and fibromyalgia using a 10-module online training program. Once practitioners have passed the posttraining exam, they will be added to our website referral list;
- offer a members-only Facebook page where practitioners can get their questions answered, share clinical experiences, and stay on the cutting edge with the newest information on CFS and fibromyalgia;
- negotiate a 7.5% to 15% discount off wholesale with major supplement companies
- encourage holistic practitioners in the same geographic areas to get to know each other and begin cross-referring. This will markedly improve clinical outcomes while building everybody's practice;
- supply ongoing resources and training tools.
References available upon request
Jacob Teitelbaum, MD, is director of the Fatigue and Fibromyalgia Practitioners Network, and author of the popular free iPhone and Android application "Cures A-Z" and of the best-selling books From Fatigued to Fantastic!, Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now, the Beat Sugar Addiction NOW! series, Real Cause, Real Cure, and The Fatigue and Fibromyalgia Solution (2013). He is the lead author of four studies on effective treatment for fibromyalgia and chronic fatigue syndrome, and a study on effective treatment of autism using NAET. Dr. Teitelbaum does frequent media appearances, including Good Morning America, CNN, Fox News Channel, the Dr. Oz Show and Oprah & Friends. He lives in Kona, Hawaii, where he does both phone and in-person consultations. Website: www.EndFatigue.com.