Fibromyalgia and Chronic Fatigue Syndrome
As people continue to spend more energy than they have, the problems can become more severe. When their “energy crisis” reaches a critical stage, the person will actually “blow a fuse” (called the hypothalamus) and develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or its painful cousin fibromyalgia. In most people, these two conditions are the same process, by two different names. ME/CFS was previously known simply as chronic fatigue syndrome. Recently, a committee of seven medical professionals agreed to change the name to ME/CFS to more accurately describe the disease. Many patients and doctors familiar with ME/CFS felt the name “chronic fatigue syndrome” belittled those that suffered from the disease and gave a false impression of laziness. The CDC has yet to follow suit.
Who gets fibromyalgia?
Anyone can, from young children to people in their 90s, and it afflects 4 to 8 percent of the total US adult population; up from 2 percent a decade ago. As with many illnesses associated with immune dysfunction (like lupus, multiple sclerosis, and rheumatoid arthritis for example), more than three fourths of those with fibromyalgia are female. Eighty percent of people with ME/CFS and fibromyalgia are given the incorrect diagnosis for years; often being told they are depressed, have anxiety, lupus, arthritis, or a host of other misdiagnoses.
How do I know if I have fibromyalgia?
In the early stages of burnout, symptoms are largely anxiety, stress, and can also include symptoms of adrenal exhaustion. What’s the simple way to tell if you have exhausted your adrenal stress handler glands? If you’re irritable when you’re hungry. I tease that the battle cry of people with adrenal exhaustion (when they get hungry) is “Feed me NOW, or I’ll kill you!”
Do you feel exhausted much of the time, have widespread achiness, “brain fog,” and severe insomnia despite the fact that you are exhausted? Has this persisted for more than three months even though you took a vacation or rest frequently? If the answers to these questions are yes, then you likely have fibromyalgia. It’s that simple.
This makes sense if you consider the effects of a body wide energy crisis. We talked about the master control center called the hypothalamus going offline. This center controls sleep, which is why the paradox of severe insomnia despite exhaustion is such a good marker for fibromyalgia. It also controls your hormonal system, temperature regulation (so 98.6 degrees may be a fever), sweating, bowel function, and blood pressure. And when you’re talking about widespread achiness, think of your muscles like a spring. They need energy to relax much more than to contract, so your muscles can get locked in the shortened position— causing you pain! To make this easier to understand, think about rigor mortis after people die: The muscles don’t go limp—they stiffen up, tight as a board. Because of your body’s energy crisis, your muscles get stuck in the shortened position. After a few weeks, the tight muscles begin to hurt. Chronic pain in your body amplifies pain messages in the brain itself (called “central sensitization”), and this causes the widespread pain. Increase your energy production, however, and your muscles will relax, and the pain goes away!
The risk of getting fibromyalgia is lower in those who exercise more and weigh less. Unfortunately, the average weight gain in these illnesses is 32 pounds—and nearly impossible to lose until metabolism is restored.
There is also a free, online symptom analysis program at endfatigue.com that can analyze your symptoms (and even your lab tests if available) to determine what is causing your ME/CFS and fibromyalgia, then help to tailor a treatment protocol for your. This will make figuring out what you need to do fairly simple.
What causes fibromyalgia?
In general, fibromyalgia and ME/ CFS can be triggered by anything that dramatically increases your energy requirements or decreases your energy production. Most often, people have a mixture of excess situational stress, then they get pushed over the edge by some major physical stress.
I have seen this mix in thousands of patients I have treated, and my own case serves as a good example, too. I came down with ME/CFS in 1975, and it knocked me out of medical school for a year, leaving me homeless for that time. My mom and much of my family had gone through the concentration camps in Auschwitz during World War II, and while I was in medical school, they went through a very emotional struggle. As is often the case, people with ME/CFS tend to be fairly empathic, can’t say no, and they often let themselves be used as emotional toxic waste dumps by other—albeit often well-meaning—people. In my case, I tried to be the peacemaker; that turned into a big mistake.
Meanwhile, my dad had died years earlier, so I was working and paying my own way through college and medical school, including working as a nurse in the neonatal intensive care unit. I basically finished college in three years and was rushing through medical school (taking a heavy load and finishing school more quickly made it cheaper).
Being an adrenaline junkie, I seemed to be handling all of this just fine. I was also a sugar junkie and living on breakfast cereal and hotdogs, so my nutrition wasn’t great. Without knowing it, I had underlying candida/yeast overgrowth from antibiotics that I took while hospitalized as a child. In the context of all this, I came down with a severe viral infection—a common trigger in ME/CFS and fibromyalgia. I called it the “drop dead flu.” When I didn’t get better after several months, my professors gave up on me and figured I was just another depressed medical student. I could no longer work, had to drop out of medical school, and found myself homeless and sleeping in parks.
Personally, I have found that God always gives us what we need. While I was on that bench, it was like the universe put a “Holistic Medical School” sign on me. Naturopaths, herbalists, energy workers, and a host of other holistic practitioners just seemed to wander by and I started talking with them. Over time, I learned the different pieces of the puzzle that I needed to get well, was able to return to medical school, and have spent the last 35 years researching this field and teaching others how to recover from it as well.
So what are the common emotional triggers?
People with fibromyalgia tend to be overachieving adrenaline junkies, can’t say no, seek approval from others (often from people who simply are not going to give it), and basically respond to fatigue by redoubling their efforts instead of resting.
A major trigger in modern life is that women don’t recognize that raising a child is a full-time job. When they return or enter the workplace, this basically becomes working overtime. While it is, of course, definitely okay (and often wonderful) for women to be in the workplace, they need to give themselves credit for working two full-time jobs. This means getting help in the home and moderating their work stress as much as possible.
What are the common physical triggers?
In those with sudden onset, the most common triggers are infections, pregnancy, and injuries. In those with gradual onset, hormonal deficiencies (thyroid, adrenal, and perimenopause), sleep problems (including restless leg syndrome, sleep apnea, young children, snoring husband, or simply not making time for sleep), nutritional deficiencies with excess sugar intake, and autoimmune disorders such as lupus or rheumatoid arthritis are some of the more common triggers.
But these triggers are not the rule by any means; sometimes they trigger fibromyalgia in some, but not others. In part, this is because people with ME/CFS and fibromyalgia are often set up for an energy crisis by both their genetics and the stresses in their life.
I’m tired of being sick and in pain! How can I get well?
The good news is that research has shown that more than 91 percent of patients with fibromyalgia improve with proper treatment, with a greater than 90 percent average increase in the quality of their life.
On an emotional level, the keys are to check in with your feelings and learn to say “no” to things that feel bad, while saying “yes” to the things in your life that feel good. Joseph Campbell, the world-renowned anthropologist, summarized it well when he said “Follow Your Bliss!”
Being people pleasers, we have trouble saying no, so here are my Doctor’s Orders: If you have fibromyalgia or ME/CFS and something feels bad, say no. If you need to, blame it on me—Dr. T. This includes when “friends” that are energy vampires come over to use you as an emotional toxic waste dump. “No” is a great word. It is also a complete sentence and requires no further explanation.
On a physical level, you need to SHINE: get enough Sleep, check your Hormonal balances, get rid of or treat any Infections, add some Nutritional supplements to your diet, and Exercise as possible. If any of these are out of balance, not only can your ME/CFS or fibromyalgia get worse, but you may also be setting yourself up for further infections and other emotional and physical complications.
My doctor is clueless! How can I get the help I need?
Unfortunately, most physicians are simply not trained in diagnosing or treating ME/CFS or fibromyalgia. Some doctors may misdiagnose or tell you the problem is in your head, but I don’t expect fibromyalgia experts to know how to do heart bypass surgery and I don’t expect a standard physician to understand fibromyalgia. If you suspect you have fibromyalgia or ME/CFS, you need to go to somebody trained in the field.
The Fibromyalgia and Fatigue Centers (FFC, fibroandfatigue.com) nationally have effectively treated more than 20,000 using the SHINE Protocol. The doctors at the FFC specialize in these illnesses, and as their medical director, I have the honor of assisting in their ongoing training. Many holistic physicians are excellent at treating this illness, and thousands of practitioners can be found at holisticboard.org and naturopathic.org. Stop setting yourself up for frustration, and go to a practitioner familiar with how to get you well, now.
If you are unable to see a doctor right away, there is a “Fibromyalgia Specialist” online computer program I created to help evaluate your symptoms (and if you have them available even your lab tests) to determine the likely causes of your CFS and fibromyalgia. It will tailor a mix of natural and prescription therapies to your specific case. This way you can get started on your own with the natural therapies (almost the entire treatment can be done naturally), and discuss the few prescriptions you might need with your family physician. This program can be found at endfatigue.com.
Are there other helpful treatments as well?
Absolutely! New research into fibromyalgia is skyrocketing. Let’s look at some of the newest research, as well as the important area of treating food and other toxicities/ sensitivities. Very promising new research includes:
The Methylation protocol. It appears that a subset of people with ME/CFS and fibromyalgia have a biochemical defect in what is called the “Methylation cycle” which makes it very difficult to maintain energy production. This defect can be treated with a special nutritional protocol initially proposed by Amy Yasko for treating autism and developed further by two of my favorite ME/ CFS and fibromyalgia researchers—Rich Van Konynenburg, PhD, and Neil Nathan, MD.
Nathan discusses the Methylation protocol in Chapter 14 of his new book On Hope and Healing (Et Alia Press, 2010). He recommends the protocol be done under a holistic physician’s supervision as it may sometimes initially flare symptoms. The problem is that very few physicians are even familiar with it.
Nathan notes that “what is most important is that we have recently shown that the use of tiny doses of very specific combinations of vitamin B-12 and folic acid has resulted in significant improvement in patients with fibromyalgia and chronic fatigue.” He completed two studies with this protocol and found that 70 percent of his patients improved within three months, 20 percent reported they were “much better, occasionally to the point of feeling cured. In the second study of 30 patients, the average improvement was rated by our patients as 48 percent.”
Antivirals. Another exciting new research explores different viruses and using different antivirals in a subset of ME/CFS patients. Some of the most exciting, and controversial, research is exploring the presence of XMRV/MLV virus in ME/CFS and fibromyalgia. Studies are still ongoing, but keep your eyes peeled for more information in the coming year.
Diet. A subset of people with fibromyalgia have severe food and other sensitivities. When you treat the candida and low adrenal levels, I have found that food allergies often go away. In those where they persist, or in patients who can’t take anything,—even natural remedies— because they have severe sensitivities, a simple but powerful treatment holds great promise.
NAET. The Nambudripad Allergy Elimination Technique uses a mix of muscle testing and a special acupressure approach to eliminate sensitivities. I have found this so remarkable that our foundation designed and funded a study using NAET for autism, which was recently accepted for publication. In this study, 23 of the 30 children in the active treatment group were back in regular schools at the conclusion of one year of treatment as opposed to 0 of 30 in the untreated control group. We often see similarly dramatic results in fibromyalgia and ME/CFS patients with severe sensitivities. NAET was developed by Devi Nambudripad, MD, PhD, LAc. Although some patients are also sensitive to hormones, chemicals, and sometimes even spouses, Nambudripad focuses on treating the food sensitivities. She says “we focus on treating 10 key food allergens first. There are over 50groups of foods that patients must be tested for however. Once sensitivities to these foods are cleared, the patient can eat them and usually feels much better.” More than 12,000 NAET practitioners worldwide can be found at naet.com.
. A special energy nutrient called ribose was shown in a recent study to increase energy an average of 61 percent after only three weeks. D-Ribose is an outstanding nutrient (a special sugar—even OK for those who need to avoid sugar). In addition to its role in making DNA and RNA, Ribose is the key building block for making energy. After an initial study in our research center showed an average 45 percent increase in energy in fibromyalgia patients who took ribose. A larger study was undertaken (and has been submitted for publication). In the study, 257 Patients with ME/CFS and fibromyalgia at 53 health practitioner offices were given 5 g of ribose three times per day for three weeks. The effects were amazing:
- An average 61.3 percent had an increase in energy.
- An average improvement in overall well being of 37 percent.
- Sleep improved on average by 29.3 percent. Mental clarity improved by an average of 30 percent.
- Pain decreased by an average of 15.6 percent.