Fibromyalgia patients have a tough time. Not only do they have to cope with a painful condition, but they frequently have to cope with doctors who are skeptical it even exists. Some still think-despite conclusive evidence to the contrary-that the disease isn't "real." Many will say "it's all in your head." If you have fibromyalgia, and you have such a doctor, fire that person.
Fibromyalgia (or fibro for short) is a disease defined by aches and pains all over the body, frequently accompanied by fatigue. It affects more than 10 million people in the US, more than 80 percent of whom are women, most commonly between the ages of 20 and 50. Up until 2010, a diagnosis of fibro was given-once everything else was ruled out-if a person experienced pain or tenderness in 11 of 18 specified "tender points," and if she had chronic pain for more than three months in all four quadrants of her body.
But that test was both imperfect and very subjective. And it missed a lot of people. In 2010, the American College of Rheumatology changed the criteria for a diagnosis. You still have to "rule everything else out," but there's no more tender point analysis. Instead, doctors now use a 19-item checklist called the Widespread Pain Index (WPI) coupled with a symptom severity scale. Used together, these two measures are expected to identify 88 percent of cases without using a physical or tender point exam.
Even with these new diagnostic tools, fibromyalgia is still a "disease of exclusion," meaning that you have to rule out a whole bunch of other things-including hypothyroidism, lupus, and rheumatoid arthritis-before deciding that you're dealing with fibro. And that usually means a lot of lab tests.
To make things more confusing, other conditions often exist together with fibro, including chronic neck or back pain, Lyme disease, and sleep disorders. Because there's so much pain and fatigue involved, many fibro sufferers also suffer from depression. And to top it all off, fibromyalgia and chronic fatigue syndrome (CFS) are frequently confused, have many overlapping symptoms, and are often present in the same patient. Some experts even consider them the same disease, albeit with slightly different presenting symptoms.
An Expert's Perspective
Jacob Teitelbaum, MD, a Hawaii-based internist, has a unique perspective on fibromyalgia. Not only is he a one of the foremost experts on the disease, he also overcame personal bouts of both fibromyalgia and CFS in 1975. He spent the next three decades creating, researching, and teaching effective therapies, and today is medical director of the Fibromyalgia and Fatigue Centers nationally. In 2007, he distilled his wealth of knowledge on fibro and CFS into the best selling book From Fatigued to Fantastic. His newest book is The Fatigue and Fibromyalgia Solution.
"It's an energy crisis," he says when asked to define fibro. "People ‘spend' more energy than they make, and they basically blow a fuse." Asked how a person knows they have fibro, he says, "If they have widespread pain and fatigue and can't sleep even though they're exhausted, they've got it."
But what is the "it" that such patients have? Chronic fatigue syndrome? Or fibromyalgia? "It's pretty simple," explains Teitelbaum. "If you present with these symptoms to a rheumatologist, the doctor will tell you it's fibro. If you present to an infectious disease specialist, that person will tell you it's chronic fatigue. They're just two of many names for the same condition. Others are Epstein Barr syndrome or post-Lyme disease. But we're basically talking about the same thing."
Finding the Cause
According to Teitelbaum, there are "hundreds" of ways to "blow a fuse." It can happen from a trauma, especially anything that causes a neck injury, such as whiplash. Spinal cord compression in the neck sometimes seems to trigger autonomic dysfunction. "Even minor injuries can trigger fibro, especially if they disturb sleep or cause head or neck injury," he says.
Teitelbaum explains that with a head injury, there is frequent disturbance to what's called the hypothalamic-pituitary axis. In simple terms,, the hypothalamus secretes "releasing hormones" that tell the pituitary gland to secrete "controlling hormones," which in turn tell local glands-such as the thyroid or the adrenals-to send out their hormonal troops. The hypothalamus uses more energy for its size than any other area of the body. It also controls sleep. When its normal function is disturbed-as in an injury-sleep is consequently disturbed. "You're exhausted, but you can't sleep," says Teitelbaum. "Now you're in a full-blown ‘energy crisis'-you've got widespread pain and exhaustion, and you can't sleep on top of it."
"Pain is like the oil light on your body's dashboard," says Teitelbaum. "It means something needs attention. And fibro pain is your body's cry for energy." While treating the disease, you also have to treat the pain. Teitelbaum's natural approach includes a curcumin-based anti-inflammatory product called Curamin by Terry Naturally, a combination of BCM-95 curcumin (a highly absorbable form) and the herb boswellia.
In addition to following Teitelbaum's SHINE protocol (outlined on p. 50), the following nutrients can help increase energy in fibro patients- magnesium, potassium aspartate, malic acid (works especially well when combined with magnesium); ribose, and NADH (which can take up to two months to produce results).
The important thing to remember is that you can live a long, happy, and pain-free life with fibro. Just ask Teitelbaum-he's been doing it for more than 35 years. You just have to find the best treatment that works for you. And ignore any doctor that tells you that fibromyalgia is "all in your head."
What can you do?
Fibro and CFS are two conditions for which conventional medicine has little to offer. Symptoms are often managed with antidepressants and painkillers, but this is a lousy solution-and most patients know it.
Teitelbaum has a different approach, which he calls the SHINE protocol. SHINE stands for Sleep, Hormonal Support, Infections, Nutritional Support, and Exercise (as able). In a study funded by Teitelbaum's foundation, 91 percent of patients improved on this protocol, with a whopping 90 percent increase in their ratings of "quality of life." Here's how it works:
Sleep: Teitelbaum suggests a daily doses of ½ gram of melatonin, plus a mostly herbal-based sleep formula with ingredients such as passionflower, hops, and L-theanine.
Hormones: "Hormone tests aren't reliable," says Teitelbaum. "If you're tired and fatigued, you deserve a trial of thyroid hormone. If you're irritable when hungry, you deserve a trial of adrenal support."
He also suggests considering a trial of iodine, 6.25 mg per day of the tri-iodine form. "You'll know in the first month that it's working," he says. Teitelbaum suggests Tri-Iodine by Terry Naturally.
Infections: Identify and treat any infections-especially candida. For more information, see Teitelbaum's book, The Fatigue and Fibromyalgia Solution.
Nutritional Support: "Most people find they feel better on a low-carb/high-protein diet," says Teitelbaum. He highly recommends avoiding sugar, increasing water intake, and, although counterintuitive, increasing salt intake as well. "If you restrict salt in people with fibromyalgia, the patients will crash and burn," he says, because the adrenals make salt- and water-retaining hormones called mineralocorticoids. "These folks are dehydrated," he says. "They drink like a fish and pee like a racehorse. They benefit by increasing both water and salt."
Teitelbaum likes the herb licorice (not the candy) because it slows the breakdown of adrenal hormones. You can find it in teas and adrenal formulas, but do not use licorice without a doctor's ok if you have high blood pressure.
He also recommends 500 mg per day of vitamin C; 50 mg per day of vitamin B5 (pantothenic acid); and adrenal glandulars.
Exercise: "Do as able," is Teitelbaum's recommendation. "Exercise helps. Do what you can."
Products for less pain, more energy
Carlson LabsRibose features 3g of pure d-Ribose per tsp.-just mix the natural energy-enhancig powder with juice.
Country Life VitaminsMalic Relief Formula contains a blend of supportive, pain-relieving nutrients, including malic acid and magnesium.
Enzymatic TherapyFatigued to Fantastic! Energy Revitalization System is a multivitamin drink mix designed for fibro and CFU patients.
FloraSleep•Essence, an organic liquid formula, helps to gently promote sleep with a mix of herbs, including passionflower and lemon balm.
Redd RemediesENERGY trueENERGY supports both adrenal and thyroid health with licorice, vitamin B6, and herbal energizers.
Morning Energy Cocktail
According to Teitelbaum, the following trio of supplements make for "an outstanding morning energy cocktail":
- CoQ10 (100 mg)
- Ribose (5 gm)
- Fatigued to Fantastic! Energy Revitalization System from Enzymatic Therapy (one serving)
"Even minor injuries can trigger fibro, especially if they disturb sleep or cause head or neck injury." -Jacob Teitelbaum, MD, author of The Fatigue and Fibromyalgia Solution
Jonny Bowden, PhD, CNS, aka "The Rogue Nutritionist," is a nationally known health, nutrition, and weight-loss expert. He is the author of The Great Cholesterol Myth and numerous other books. His website is jonnybowden.com.