Chronic fatigue syndrome and fibromyalgia are incredibly difficult to diagnose, and the causes are uncertain.
Fibromyalgia and chronic fatigue are both medically unexplained illnesses. Meaning that while the symptoms are clear and medically diagnosable the underlying causes are unclear. Heightening the frustration of those suffering from the conditions further is that the two are often found together. Chronic fatigue syndrome, also known as myalgic encephalomyelitis, causes chronic fatigue while the symptoms of fibromyalgia are overall tenderness throughout the body, nonspecific pain, and a heightened sensitivity to pain. Both conditions cause trouble sleeping alongside their characteristic chronic fatigue. The combination causes understandable frustration for those who are diagnosed.
In this excerpt from the book Real Cause, Real Cure by Jacob Teitelbaum, MD and Bill Gottlieb, CHC the authors discuss habits that can contribute to the pain, fatigue and sleeplessness that characterize the conditions. They also share some simple lifestyle changes that can make a difference.
Real Causes
- Poor Sleep. Insomnia is a primary symptom of both CFS and FM, and treating it is critical in healing these conditions.
- Hormonal Imbalances. Low levels of adrenal and thyroid hormones, and of testosterone, can contribute to the development of CFS/FM.
- Nutritional Deficiencies. A nutrient-draining addiction to a highsugar diet can cause CFS/FM.
- Inactivity. The inactivity from the fatigue and/or muscle pain of CFS/FM deconditions the body—and gradually increasing activity is a key part of the cure.
- Happiness Deficiency. Severe stress can aggravate these health problems.
- Infections. In this condition several infections often need to be addressed, including Candida albicans and Lyme disease.
You go to sleep at night and wake up tired. You nap in the afternoon and wake up tired. You take a two-week vacation and come home tired. You’re tired all the time. Really tired.
And that’s not all. Your sleep is never deep and refreshing. In fact, it feels like you spend more time awake than asleep, night after night. And you’re in pain a lot, mysterious, all-over pain. And you have a hard time thinking—concentrating, remembering, deciding.
If these symptoms sound like your symptoms—severe fatigue that doesn’t go away with rest, widespread pain, and brain fog—you probably have chronic fatigue syndrome (CFS) and/ or fibromyalgia (FM). (For most people, CFS and FM are two faces of the same illness, which I’ll refer to as CFS/FM.)
CFS/FM is an energy crisis: You use more energy than your body can manufacture, usually because of long-term physical or mental stress of one kind or another, and your body blows a fuse.
And that fuse is a main fuse: your hypothalamus, a part of the brain that controls sleep, the hormone-producing endocrine system, hunger and thirst, mood, sex drive, blood flow, blood pressure, body temperature and sweating, and bowel function.
If you have CFS-predominant CFS/FM, your main symptoms are severe chronic fatigue and insomnia. If you have FM-predominant CFS/FM, your main symptoms are muscle pain and insomnia. Why muscle pain? Muscles are like a spring: It takes more energy to relax and release than it does to contract. (Think about rigor mortis—muscles that are totally without energy are also totally contracted or stiffened.) The energy crisis, then, has left your muscles shortened, tight, and painful. You might ache all over or in specific areas, with pain that’s constant or now and then. And that chronic muscle pain causes the pain itself to generate more pain signals, a problem called central sensitization. You hurt. Probably all over. Probably all the time.
A list of the most common symptoms of CFS/FM includes…
Don’t let a doctor tell you these symptoms are “all in your head” or that CFS and FM are not “real diseases.” Most physicians aren’t trained in recognizing or treating CFS/FM and often even deny their existence. But the National Institutes of Health, the Centers for Disease Control, and the FDA all recognize CFS/FM as real diseases and very common ones. In fact, if statistics include both overt and borderline cases, estimates of CFS/FM prevalence have increased markedly, to include more than four percent of the population (about 12 million people).
There are many causes of CFS/FM. As I mentioned earlier, severe physical or emotional stress can cause it. You might have had a sudden infection—what some experts call “the drop-dead flu”—from which you never fully recovered. Nutritional deficiencies are a cause. Or becoming “addicted” to sugar and other refined carbohydrates (which can lead to yeast overgrowth and other chronic infections, exhausting your adrenal glands, which undercuts the hypothalamus and leads to CFS/FM). Or the cause could be any combination of the above factors.
I had CFS/FM in 1975, and it knocked me out of medical school and left me homeless for a year. But I learned how to recover from the illness—and have spent more than four decades helping others do the same.
The good news is that CFS/FM is very treatable. Just as there is no damage to circuit breakers when they blow in your house, there is also no damage to the hypothalamus. It just goes into “slow” mode until the energy crisis of CFS/FM is properly treated. I call my treatment for CFS/ FM the SHINE protocol, an acronym for…
•Sleep restoration
•Hormonal support
•Infection treatment
•Nutrition
•Exercise (as able)
In a study published in the Journal of Chronic Fatigue Syndrome, my colleagues and I tested the SHINE protocol in 72 people with CFS/FM, dividing them into two groups. One group received the protocol and the other a placebo treatment. After three months, 29 of the 32 people on the SHINE protocol said they felt either “much better” (16) or “better” (13)—they had more energy, deeper sleep, greater mental clarity, less pain, and increased well-being. Among those in the placebo group, only 12 out of 33 people felt either “much better” (3) or “better” (9). And, by the end of the study, those undergoing the SHINE protocol had a 90 percent improvement in their “quality of life.”
An editorial about the study in Practical Pain Management, the journal of the American Academy of Pain Management, discussed the importance of those results: “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.”
Let’s look at how you can implement the SHINE protocol.
The hypothalamus controls sleep. In CFS/FM, the hypothalamus is malfunctioning. This means getting seven to eight hours of sleep seems impossible, including the hours of nondreaming deep sleep that are truly restorative and could heal the hurting hypothalamus. Unfortunately, many of the sleep medications on the market only make this problem worse—by actually decreasing the amount of deep sleep (the nondreaming sleep that is most restorative to the body).
If you have CFS/FM, you need to take the right type of sleep medication. That includes zolpidem (Ambien), trazodone (Desyrel), gabapentin (Neurontin), clonazepam (Klonopin), and pregabalin (Lyrica). You can also take cyclobenzaprine (Flexeril) or amitriptyline (Elavil) if you don’t have restless legs syndrome (those two drugs can worsen the problem).
Over-the-counter medications such as doxylamine (Unisom) or diphenhydramine (Benadryl) can also be effective in doses of 25 to 50 milligrams at bedtime.
In addition to medications, I also recommend that you try a natural sleep aid, such as the Revitalizing Sleep Formula from Nature’s Way, Terrific ZZZZ from Terry Naturally, and five milligrams of a specific form of melatonin called Dual Spectrum, from Nature’s Bounty. Both individually and in combination, these natural remedies can be very helpful. (For more on this formula and other natural sleep remedies, see Insomnia and Other Sleep Disorders on page 268.)
Because your sleep center is not working, during the first six months of treatment for CFS/ FM, you may need to take as many as six different types of sleep treatments to achieve eight hours of sleep a night, taking a low dose of each rather than a high dose of one. This may seem like a lot of pills and treatments. But think of the treatment for the insomnia caused by your ailing hypothalamus as similar to the treatment for high blood pressure. Your doctor starts with one pressure-controlling medication and adds another and another until control is achieved—and those medications are prescribed for as long as they are needed.
You can probably stop taking sleep medications after six to 18 months of feeling well. But you may need to take one-half to one tablet of sleep medication (or a sleep-enhancing herbal formula) for the rest of your life, particularly during periods of high stress, to make sure you don’t relapse. This is similar to a person with high blood pressure or diabetes who stays on medication to control high blood pressure or high blood sugar levels. The doctor doesn’t take them off those medications every time pressure or sugar levels normalize! And my experience with more than15,000 CFS/FM patients shows that this approach of continuing to regularly use sleep medication is safe. It’s also essential if you want to get well and stay well.
A patient asked me to list the most useful and effective supplements for people with CFS/FM. On my list, I include the Energy Revitalization System multinutrient powder (or Clinical Essentials multinutrient supplement) and ribose, discussed on page 30 and below. I also recommend…
•Revitalizing Sleep Formula, from Nature’s Way
•Acidophilus Pearls, from Nature’s Way.
•Adrenaplex, from Terry Naturally, one to two capsules each morning for adrenal support.
•Adrenal Stress-End, from Nature’s Way. This product helps revive a weakened adrenal gland, common in CFS/FM. Take one or two capsules each morning (or one or two in the morning and one at noon). If it upsets your stomach, take less or take it with food.
Just as an electric grid control center controls the movement of electricity throughout a city or state, so the hypothalamus controls the dispersion of hormones throughout your body. That’s why when your hypothalamus isn’t up to par, you have all kinds of different hormonal imbalances and deficiencies—all of which need to be rebalanced and regenerated.
In my experience, it’s helpful to treat CFS/FM with bioidentical thyroid, adrenal, ovarian, and/or testicular hormones even if your blood tests for levels of these hormones are normal. (Read page 95 in Hormonal Imbalances to learn more about bioidentical hormones and why many blood tests for hormone levels are inaccurate.)
For example: Bioidentical estrogen and progesterone can help women who have CFS/FM symptoms that are worse around their periods. Bioidentical testosterone can benefit men whose blood tests are in the lowest 30 percent of the normal range (and that’s 70 percent of men with CFS). A daily dose of 2.5 milligrams to 20 milligrams of natural hydrocortisone (Cortef) can help reenergize exhausted adrenal glands.
For pain, I combine Curamin by Terry Naturally and hemp oil. These pain-relieving remedies in combination contain herbs and nutrients that help all seven key components of fibromyalgia pain. For more information, see Chronic Pain on page 197.
For anyone with the severe fatigue of CFS or the pain of FM, I also recommend a therapeutic trial of energizing thyroid hormone: specifically, either (1) the prescription desiccated thyroid, or (2) a mix of T4 and T3 thyroid hormones made at a compounding pharmacy (the type of pharmacy that customizes medications on-site.
If your physician won’t work with you to find the right mix of bioidentical hormones to treat CFS/FM, I recommend finding a holistic physician who knows how to help you.
Most people with CFS/FM have weakened immune systems, resulting in multiple chronic infections. These can include viral infections; parasites and other bowel infections; infections sensitive to long-term treatment with antibiotics such as ciprofloxacin (Cipro) and doxycycline (Doryx), such as mycoplasma, chlamydia, and Lyme; and, most frequently, fungal/candida infections.
Because most CFS/FM patients have an overgrowth of the fungus Candida albicans, I have found that most benefit from six to 12 weeks of treatment with the antifungal fluconazole (Diflucan), as well as the other remedies for candida in Candida Overgrowth on page 181.
Another excellent candida treatment: Sinusitis Nose Spray, a compounded prescription product that your doctor can order from ITC compounding pharmacy. (You can find contact info for ITC in Resources on page 362.) Take it along with Diflucan.
For optimal benefit, add Silver Nose Spray (Argentyn 23). I recommend using one to two squirts of both sprays, in each nostril, two to three times a day, for six to 12 weeks—or until the problem resolves. (In some cases, people choose to stay on both of these nose sprays long term, which can be very helpful and is safe.) This trio of treatments is wonderful for eliminating chronic sinusitis caused by a fungal infection—a common problem in people with CFS/FM.
Think about it for a moment. We are a big bag of water. Ever wonder why it doesn’t all flow down to our legs when we stand up?
It does! Because of this, our autonomic nervous system has to direct the blood vessels in our legs to contract and send the blood back up to our brain and muscles where it is needed.
But when this system is not working properly, your blood pressure can drop significantly when you are upright for an extended period. This can result in low blood pressure (neurally meditated hypertension, or NMH), or a compensatory rise in heart rate, called postural orthostatic tachycardia syndrome (POTS). But whatever name you use, it falls under the umbrella of a problem called orthostatic intolerance. When you stay upright, you get dizzy, exhausted, your heart races, and you have “brain fog,” or a feeling of confusion or disorientation, as if your brain isn’t working right.
Orthostatic intolerance is a common and very treatable symptom of CFS/FM. And research shows that many people with NMH and POTS actually have CFS/FM. (See page 196 to take a test to see if you have the problem.) Fortunately, three natural treatments can be very helpful…
•Increase salt and water intake. One of the common hormonal deficiencies of CFS/FM is a low level of vasopressin (antidiuretic hormone), which leaves you dehydrated. You also need to eat large amounts of salt—the sponge that holds water in your body—even licking sea salt from the palms of your hands will help.
•Use medium pressure (20 mm to 30 mm) compression stockings. It is remarkable how much improvement many people see by using these. The ideal pair is mid-thigh, but if you can’t wear those, knee-high stockings will still help. Wear them during the day when you are active (not when you’re lying down for extended periods, such a taking a nap)
•Improve adrenal function. Use Adrenaplex, from Terry Naturally, which I discuss in Adrenal Exhaustion.
•Talk to your doctor about these medications. For severe cases, medication may be necessary, including: DDAVP, an antidiuretic hormone (0.1 mg to 0.2 mg orally daily); midodrine (ProAmatine), 5 mg to 10 mg twice daily (morning and early afternoon); and medications that increase serotonin and dopamine, such as Zoloft.
which can be very helpful and is safe.) This trio of treatments is wonderful for eliminating chronic sinusitis caused by a fungal infection—a common problem in people with CFS/FM.
If your symptoms persist after several months of following this strategy to treat the candida infection, see a CFS/FM specialist who can test and treat you for other infections.
CFS/FM patients need optimal daily nutrition, and they can get it in the Energy Revitalization Formula, the multinutrient powder that I formulated specifically for my CFS/FM patients (or Clinical Essentials multinutrient supplement), but that works to energize and nourish anyone who takes it. (You can read about this supplement and other supplements you may need in Nutritional Deficiencies on page 30.)
I have designed a supplement called Smart Energy. It combines the five grams of ribose with the herbal “adaptogens” ashwagandha, rhodiola, licorice and schisandra, all four of which can dramatically increase stamina and energy. And it includes green tea extract (which both energizes and calms). I could write a whole book on the benefits of each ingredient, and their combination—because the benefits of extra energy are, well, amazing.
As a morning routine, I recommend one scoop of the Energy Revitalization System multinutrient powder (or two tablets of a multivitamin supplement such as Clinical Essentials by Terry Naturally if Energy Revitalization is unavailable) along with two capsules of Smart Energy—and then a second dose of Smart Energy at lunchtime. You can find both products at my website, EndFatigue.com.
I also recommend supplementing the diet with ribose, a compound I consider the ultimate “quick fix” for CFS/FM. Ribose is a healthful sugar that plays a role in the manufacture of RNA and DNA, and is a key building block of cellular energy. In fact, the main energy molecules in your body—ATP, NADH, and FADH—are made of ribose, plus B vitamins and phosphate.
In a study my colleagues and I conducted with the nutrient, published in the Journal of Alternative and Complementary Medicine, 36 people with CFS/FM took five grams of ribose, three times a day, for 25 days (after which they lowered the dose to five grams twice a day). Twenty-three of them had more energy, better sleep, more mental alertness, less pain, and greater well-being. On average, the increase in energy was 45 percent.
In a second study (conducted with 257 CFS/FM patients at 53 health practitioners’ offices), published in the Open Pain Journal, the nutrient increased energy by an average of 61 percent— after only three weeks. That is a very dramatic improvement for a single nutrient.
Ribose is taken in powder form. I recommend five grams of the powder, three times daily, for three weeks, and then two times daily. (Try the SHINE brand, which I formulated—it provides the same quality as any other product on the market, but at half the cost.) You’ll usually see a dramatic boost in energy in two to three weeks.
Exercise is energizing for just about everyone. But if people with CFS/FM exercise beyond a certain point, they feel more fatigued the next day. In fact, they’re so fatigued they often have to stay in bed the next day. Here’s a step-by-step approach to exercise with CFS/FM…
Do You Have Orthostatic Intolerance (POTS or NMH)?
Below is a quick test that has been shown in the Mayo Clinic Proceedings to accurately screen for orthostatic intolerance. As I explained earlier: in orthostatic intolerance, when you stay upright you get dizzy, exhausted, your heart races, and you have “brain fog,” or a feeling of confusion or disorientation, as if your brain isn’t working right. Circle 0-4 below as best applies to you.
- Frequency of orthostatic symptoms when I stand up
0 I never or rarely experience orthostatic symptoms
1 I sometimes experience orthostatic symptoms
2 I often experience orthostatic symptoms
3 I usually experience orthostatic symptoms
4 I always experience orthostatic symptoms
- Severity of orthostatic symptoms when I stand up
0 I do not experience orthostatic symptoms
1 I experience mild orthostatic symptoms
2 I experience moderate orthostatic symptoms and sometimes have to sit back down for relief
3 I experience severe orthostatic symptoms and frequently have to sit back down for relief
4 I experience severe orthostatic symptoms and regularly faint if I do not sit back down
- Conditions under which orthostatic symptoms occur
0 I never or rarely experience orthostatic symptoms under any circumstances
1 I sometimes experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot shower)
2 I often experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot shower)
3 I usually experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot shower)
4 I always experience orthostatic symptoms when I stand up; the specific conditions do not matter
- Activities of daily living (e.g., work, chores, dressing, bathing)
0 My orthostatic symptoms do not interfere with activities of daily living
1 My orthostatic symptoms mildly interfere with activities of daily living)
2 My orthostatic symptoms moderately interfere with activities of daily living
3 My orthostatic symptoms severely interfere with activities of daily living
4 My orthostatic symptoms severely interfere with activities of daily living. / am bed or wheelchair bound because of my symptoms
- Standing time on most occasions
0 I can stand as long as necessary without experiencing orthostatic symptoms
1 I can stand more than 15 minutes before experiencing orthostatic symptoms
2 I can stand five to 14 minutes before experiencing orthostatic symptoms
3 I can stand one to four minutes before experiencing orthostatic symptoms
4 I can stand less than one minute before experiencing orthostatic symptoms
______ Total Score
Scores of 9 or higher (or seven or higher in people with CFS/FM) suggest orthostatic intolerance. You’ll find three effective treatments for the problem on page 194: increase salt and water intake; wear compression stockings; prescription medications that can help.
Unless it’s cold out and cold flares your pain, I recommend you walk outside so you can get sunshine—your key source of vitamin D, which improves immune function and decreases the risk of hypertension, diabetes, and cancer. (Many people with CFS/FM are vitamin D deficient.) Make a plan to walk daily with a friend, and go somewhere that’s enjoyable (on cold days it could be in the mall). That way, you’re more likely to have fun and stick with regular exercise.
Unless it’s cold out and cold flares your pain, I recommend you walk outside so you can get sunshine—your key source of vitamin D, which improves immune function and decreases the risk of hypertension, diabetes, and cancer. (Many people with CFS/FM are vitamin D deficient.) Make a plan to walk daily with a friend, and go somewhere that’s enjoyable (on cold days it could be in the mall). That way, you’re more likely to have fun and stick with regular exercise.
I have had the honor of knowing fibromyalgia expert Gaetano Morello, ND, for several decades. He serendipitously found that a unique natural (animal serum sourced) treatment was dramatically helping his patients with fibromyalgia—usually in about a week. When they ran out of this unique therapy, symptoms returned and the people taking it were desperate to get more.
We decided to do a study on this promising therapy. You can learn about the results, as well as the treatment we are using, at the website RecoveryFactors.com.
