CHAPTER 1: Introduction

Better than a thousand useless words is one single word that gives peace — Dhammapada

As I started the process of writing this book, I was confused and overwhelmed. For several years, I had been studying everything I could find about chronic fatigue syndrome (CFS) and fibromyalgia. I read more than 50 health and medical books, 1000 medical journals and magazine articles and 2000 personal emails from people with CFS and fibromyalgia. I heard from dozens of experts from around the country. And as I sat down to write, I struggled with a fundamental challenge: all the books, articles, experts and patients rarely agree on the answers to even the most basic questions.

What are the symptoms of CFS or fibromyalgia? Are CFS and fibromyalgia actually just the same disease? How do you get diagnosed? Why would some doctors suggest that CFS and fibromyalgia are just “fad” illnesses, and all in your head? Do you need blood tests or not? What are some of the triggers? Is it stress? Nutritional deficiency? Toxic exposure? Infection? Can you ever get better? What treatments are best? Should you follow a holistic, natural, or alternative medicine approach?

Or, forget holistic, should you go totally conventional and take prescription antidepressants, prescription sleeping pills and prescription pain relievers? Is it all really about an underlying endocrine or thyroid imbalance, and hormones are the answer? Is the solution the guaifenisin protocol, or is it detoxification? Is exercise helpful or harmful? What about your diet and vitamins? Could psychotherapy be the solution?   Could you be dealing with a virus, a bacterial infection, a stealth pathogen? Should you have surgery, or is the real answer yoga, cranial manipulation, or trigger point therapy?

One patient, BJ, struggled to get a doctor to take her seriously.

I find doctors simply are not interested in this illness.  There are no dramatic treatments so there can be no heroes.

While there may not be any heroes, there are some experts who are standing out as taking risks, and offering more than just the standard fare when it comes to CFS/fibromyalgia treatment. But whom should you believe? Should you listen to Dr. Teitelbaum, or Dr. Cheney, or Dr. St. Amand, or Dr. Lowe, or Dr. Bell, or any one of the other CFS and fibromylagia experts? Should you listen to your own GP, or your rheumatologist, or your internist, or your infectious disease specialist, or your chiropractor or your holistic MD?   Will you be able to find a doctor who cares about you?

Just trying to sort through this all gave me a huge headache. (Headache, by the way, can be a symptom of CFS and fibromyalgia, depending on which expert you consult!) But in my case, headache was a symptom of information overload and confusion.

I know that you can relate to what I’m saying. For those of you who are in the throes of CFS or fibromyalgia right now — whether you’re struggling to get a diagnosis, you’ve just been diagnosed, or you’re a long-term traveler on the road to better health – a headache is the least of your problems. Not only are you suffering a variety of symptoms, which may include total and utter fatigue and exhaustion, difficulty or impossibility concentrating, and debilitating pain, among others, but on top of it all, if you’re going to feel better, you have to take charge of your own health and learn all about CFS or fibromyalgia yourself! And all this, while you struggle with conditions that, despite their very real and demonstrable existence, carry an outdated stigma not seen with other conditions. With CFS and fibromyalgia, there will always be doctors, family members and friends who dismiss you as lazy, or suffering from a psychosomatic illness, or who assume that if you’d just pull yourself together, you’d feel better.

You probably feel confused, as I was, by all the conflicting information, and overwhelmed by all the options and choices you have to make. And more than most conditions, CFS and fibromyalgia require an educated, involved and empowered patient.

The hardest part is that you need to tackle this huge challenge at a time when you’re most likely feeling sick, exhausted, fuzzy-brained and in pain.

Talk about a wrong time to try to delve into a complicated medical topic! Learning about and tackling chronic illness may seem like more than you can handle, especially when it may be overwhelming to think about performing even the most basic activity, like getting out of bed or brushing your teeth.

You may also be surprised at what a stigma CFS and fibromyalgia still have. You’re going through it, so you know, from firsthand experience, that these are very, very real conditions. You didn’t dream this up, wish it upon yourself, or develop some psychosomatic syndrome, and you can’t just think it away, buck up and feel better, or just “get over it” by sheer determination.

Many people – including some doctors – still think that chronic fatigue syndrome is the “yuppie” disease, and somehow, you bring it upon yourself. Problem is, people who think you bring it upon yourself also seem to think that you can easily will it away.

Others think that rather than real, diagnosable diseases, CFS and fibromyalgia are actually psychosomatic, laziness, malingering, or due to some inherent emotional or character weakness.

This is amazingly discouraging when it’s coming from friends, family, and coworkers, much less your doctors and practitioners.

It’s hard for some people to believe you are sick, and this is one of the most discouraging aspects of CFS and fibromyalgia. You probably appear well, even if you are quite ill and unable to function. The fact that these conditions are not visible contributes to the lack of respect you may experience from others.

Jessica, a CFS patient, said:

One of the insidious things about this disease is that you look ok, that no one knows how bad things are inside your body. How can life be so glorious, and the body so full of betrayal?

Even if you have the support and faith of those around you, there’s a fear and despair that seems to accompany CFS and fibromyalgia that is not common in many other conditions.

You may feel as if the onset of your illness was a form of death, or at a minimum, a line that clearly divides your life into “before,” and “after” CFS/fibromyalgia. Many people I talked to described these diseases as “monsters” they were battling. They described losing themselves and having pain and fatigue – both physical and emotional – that no one else except another sufferer seems to understand.

And as time goes on, it becomes clearer to you that many people simply won’t understand. What do you say when someone asks you how you are? Joyce explains the frustration:  

It is a conundrum.   I give mixed signals to others.   Others who know me, whom I do not see frequently, but who know my condition ask me how I am.   If I say good, fine with a cheerful voice they then make assumption that I am better, and say “So you are better, you are over it?” Then I say no, that is the same.   And I wonder, do they think it odd or wrong for me to say fine?   Can a quad in a wheelchair say she is fine? Of course, and no one expects her to get up from her wheelchair.   When I say I am fine I have to explain more, and then the next question, “So they haven’t figured out what it is yet?”   As though if they had I would be better?   Who ever gets better from chronic disabling conditions?   People get worse or at best stabilize over time and it is considered just a tad indiscreet to ask someone with breast cancer, not cured, if they now have it in their bones. We don’t do that. And yet with CFS there is this endless curiosity.  

Bottom line?

I wrote this book to fast-forward you through the process that I’ve already gone through. If you had the energy and time, you could read the same 50 books and 1000 research articles that I did, talk to dozens of experts, and correspond with thousands of fellow patients.   But I guarantee you, if you did, you would come to the same conclusions that I did:

  • First, you’ll discover that there isn’t a smoking gun –   you won’t find one particular trigger common to everyone who develops CFS or fibromyalgia. We’re all different, and we develop CFS and/or fibromyalgia in different ways, for different reasons, due to different triggers.
  • Next, you’ll see that there is no definitive list of guaranteed symptoms for either condition. There are some basic symptoms that are seen in many – but not all — patients, and many other symptoms that affect only some people.   Your symptoms will likely be different than someone else with CFS or fibromyalgia. Everyone doesn’t fit a mold, so your case of CFS or fibromyalgia may not resemble mine, and mine won’t resemble the next person’s.

  • You’ll find out that people get diagnosed in very different ways – and there’s no single sure-fire way to get diagnosed. Your experience of getting diagnosed is likely to be quite different than mine. You may prefer to go the route of extensive testing. I may prefer to give my medical history, then move right into focusing on treatments, based on interpreting my history and symptoms.

  • Then, you’ll find out that you can’t find one particular type of doctor or specialty that is most likely to successfully diagnose or treat your CFS or fibromyalgia. The type of doctor who ultimately diagnoses you may not be able to diagnose me, and vice versa.

  • And as for treatments, you’ll learn that there isn’t any over-the-counter supplement, prescription pill, surgery, or miracle cure-all that will easily and quickly restore you to good health.   What actually works is an approach customized to each person’s particular health situation.

It could sound bleak, but I assure you, it’s truly not! Because you are reading this book.

And while there are no universal solutions that apply to everyone, there are effective solutions…but you have to find the unique combination that works for you!

And I’ve put together the information you need to work out your own unique plan for living well.   And I know the condition you are dealing with is quite real. And I know you’re exhausted, and in pain, and I take it very seriously, because I’ve been there too.

Creating your unique plan means you must be aware of and knowledgeable about your options, and fully prepared to participate in creating a plan for your own care and treatment.   That is where Living Well With Chronic Fatigue Syndrome and Fibromyalgia will help.

While most books, organizations and even physicians promote one particular theory and treatment approach, Living Well With Chronic Fatigue Syndrome and Fibromyalgia takes a look at the bigger picture, giving you the tools, resources and information you need to create that personalized plan for living well with CFS or fibromyalgia.   Tools and features include:

  • A detailed plan on how to get diagnosed, including the tests you might ask for in some cases to aid in diagnosis.

  • Descriptions of risk factors and symptoms of CFS and fibromyalgia, and a comprehensive and detailed checklist you can use to aid in self-evaluation and diagnosis with your physician.

  • An overview of the various theories behind CFS and fibromyalgia — from infections, to hormone imbalances, to nervous system imbalances, to musculoskeletal problems, to sleep disorders, to nutritional deficiencies, and more. You can quickly become familiar with the many different schools of thought.

  • Information to help you review and evaluate the many different options you can pursue in terms of treatment – from the most conventional therapies to the most alternative mind-body approaches.

  • A patient-oriented look at the popular protocols, including Dr. St. Amand’s “guai” protocol, Dr. Jacob Teitelbaum’s interdisciplinary protocol, and more.
  • A look at the roles of hormonal treatments, antibiotic and antifungal treatments, dietary changes, detoxification, allergy treatment, stress reduction, attitude, lifestyle, mind, body and spirit in treating FMS and CFS.

  • Detailed information on how to find and work with the right practitioners.

  • Guidelines on how to develop a comprehensive treatment plan.

  • And finally, a comprehensive Resources section, with organizations, books, magazines, websites and support groups that can help.

It can be difficult, frightening and frustrating to try to live well with CFS or fibromyalgia. But it can be done.

At the time when you need it most, this comprehensive guide will introduce you to these conditions, help you get diagnosed, and then provide you with the tools you need to carefully craft your own wellness plan and confidently carry it out with the aid of your practitioners.

My Own Story

Before I continue, I thought it might be useful to explain how I became so interested in CFS and fibromyalgia. To start, I’m not a doctor, and I’m not a health professional. I have an international business degree from Georgetown University, and a background in public relations and communications consulting. But along the way, my own frustrations with health care and efforts to live well were transformed into a career in patient advocacy and health writing.

My own health adventures actually began in December of 1978 when, at 17 years of age, I had my first serious illness. I was in the midst of a busy, exciting few months of dating, working part-time, and attending the first half of my senior year of high school. Over the Christmas break, I came down with a terrible case of what seemed like bronchitis, but it quickly became clear that this was no ordinary bronchitis. I slept for 10-hour stretches, awaking only to take a sip of water, and then falling asleep again for hours.   After a trip to the doctor, I was diagnosed with a particularly debilitating case of mononucleosis around the New Year. My white count was so high that the doctor said it would be many months before I would recover and could return to school. He told my mother to plan for me to be in bed and out of school for the entire second half of the school year.  

I was horrified. This was going to put quite a crimp in my plans for dating my steady boyfriend, going to our spring proms, graduating from high school, and getting ready to start college that fall.   The doctor said there was absolutely nothing besides rest that could be done for my mono. The most exciting time of my life was turning into a total disaster.

My mother was determined to avoid disaster, however, and after consulting with a holistically minded friend, came home with a copy of Adele Davis’ book, Let’s Get Well. The book included recommendations, including a host of vitamins and an anti-stress protein drink concoction to be taken multiple times a day, which claimed to help with mononucleosis. I took my vitamins and drink several times throughout each day and night, followed a high-protein diet and rested. A week later, I felt my energy returning. Two weeks later, I felt almost normal. A trip to the doctor three weeks after diagnosis, along with a blood test, confirmed the good news. My skyrocketing white count had returned to normal. I was over my mononucleosis and could go back to school and resume my life!

My mother tried to tell my amazed doctor about our megavitamin approach. The doctor, a kindly but skeptical — and decidedly non-holistic — family doctor from the old school, wouldn’t hear of it.  

“I really don’t want to know what you did, but whatever it is you think you did, it worked!” said the doctor.

I luckily enjoyed good health throughout my twenties, no thanks to me. I was slender, a coffee and cigarette addict who made do on 5 to 6 hours of sleep a night.   I didn’t exercise; I worked like a crazy person, and ate terribly, subsisting on red meat, potatoes and junk food. I could go a week without encountering a vegetable.

I didn’t give much thought to my health again until early 1993, when at the age of thirty-two, my body and I had a chance to get intimately reacquainted. At the time, I was working a very stressful full-time job where full-time was more like 60 hours a week. A few months earlier, my car had been rear-ended, and I was still experiencing neck and back pain. I was promoting my first book and would come home and then work into the wee hours of the morning. After a few hours of sleep, I’d wake up, and a few cups of coffee and cigarettes later, I was headed back to the office. I was starting an intense relationship with a new boyfriend. It was a period of about five months of working horrendously long hours, little sleep, takeout and junk food, and plenty of cigarettes and caffeine.

I woke up one day with the worst bronchial infection I’d ever had. I felt as if I were going to die. In fact, secretly, I was certain I had some sort of horrendous disease no one had figured out yet, because I could barely lift an arm off the bed, much less get up and make my way to the bathroom.

All of a sudden, my life came to a grinding halt. No work, no book promotion, no dates, nothing. I was practically comatose on the sofa, unable to read, barely able to understand mindless television programs, and certain that I didn’t even have the mental capacity to write a memo. I couldn’t focus, could barely move, and on top of that, a numbing depression overtook me.

It took me weeks to even get the energy to go see the doctor, who ran a blood test, and said that I had off-the-chart elevations of Epstein-Barr antibodies that indicated an active infection. And, in the absence of anything else of note in my bloodwork, my doctor suggested that what was plaguing me looked like chronic fatigue syndrome.

Weeks dragged into months. Mail and laundry piled up. I had little appetite, but when I did manage to fix something, dirty dishes would sit for weeks in the sink.

And it was déjà vu. There I was again, at a time when things should have been going so well — new book, new boyfriend, exciting job   – and I was practically flat on my back most of the time, exhausted, incapacitated, and depressed!  

It was during this time that I realized my boyfriend would end up being my husband, because he stuck it out with me, despite the fact that the new me was a disheveled, foggy and depressed woman who had taken the place of the attractive, energetic and sharp person I once was.

The lack of physical energy was hard, so hard, but what was even worse to me was what is called “brain fog,” the inability to think clearly, the difficulty putting together even a simple sentence, the frustration at trying to organize my thoughts. I was a person who made my living by writing, reading and strategizing. And there I was, unable to imagine a day when I would feel well enough to even be able to write a simple paragraph — much less return to work.

My doctor decided to try an aggressive program of acupuncture. She also recommended that I return to a diet and supplement program similar to the one I followed back when I had mononucleosis. She also had me eliminate all alcohol and caffeine from my diet.

Slowly, very slowly, I could feel energy returning. If I had to quantify it now, I would say that every month, I felt maybe 1 or 2 percent better than the previous month. After a while, I felt well enough to return to work part-time, although for at least a year, I felt slow and inefficient compared to my previous performance. I would plod through the work day feeling as if I was reading, thinking and writing at half-speed, then come home from work and go to bed for 12 hours, until getting up for work the next day. I slept late into the day Saturdays and Sundays just to recuperate. Eventually, I was back at work full-time, but still exhausted and fuzzy-brained most of the time.   The weight started piling on at as well, despite no change to my diet.

Months after my early 1995 wedding to the man who had stood by me, I was dealt another health blow, diagnosed with Hashimoto’s hypothyroidism, an autoimmune disease that had caused my thyroid to become underactive.

Despite having apparently “recuperated” from my nearly yearlong bout with CFS, and being treated for the hypothyroidism, I still continued to develop all kinds of symptoms that mystified my doctor and me. My eyes became dry and gritty. My periods were heavier and more frequent. My skin started flaking. I had headaches. I had heart palpitations. My breathing felt heavy. I had excruciating pain in my ribs. My sides felt swollen. My hips ached, and there were spots in my neck and shoulder area that felt like someone had stabbed them with ice picks.   My doctor sent me for second opinions from an infectious disease specialist, an endocrinologist, a physical therapist, a pulmonary specialist, a cardiologist, an internist, an ophthalmologist, and so on. I had MRIs, CT scans, ultrasounds, blood tests. I was poked and prodded, and my symptoms continued. Then came lower back pain, alternating diarrhea and constipation, episodes of low blood sugar. I woke up multiple times per night for no apparent reason. Off I went for fasting glucose tests, stool analysis, an MRI of my back, and a prescription for sleeping pills.  

Along the way, I had become dedicated to learning more about my thyroid condition, and ended up launching several websites, a newsletter, and ultimately, wrote my first health book, Living Well With Hypothyroidism. As part of my research, I became familiar with the work of Dr. John Lowe, a fibromyalgia researcher, who suggested that there is a definite connection between hypothyroidism and fibromyalgia.

I asked my doctor to check my fibromyalgia trigger points, and sure enough, I had pain levels that went through the roof at nearly every single spot she tested. I met the criteria for a diagnosis of fibromyalgia, but my doctor and physical therapist didn’t really think the official diagnosis was all that critical. Whether I had fibromyalgia or not, my doctor’s recommended treatment was a combination of acupuncture, myofascial release physical therapy, thyroid hormone replacement, sleeping pills and other dietary and lifestyle changes that I already had in progress.

Since that time, based on all my information gathering, I’ve changed my thyroid treatment, revised my supplement program dramatically based on what I learned, and have slowly started to incorporate a Pilates-based exercise program into my routine.   I’ve changed my sleep patterns, and along with a variety of other changes, including stress reduction and mind-body efforts. And I can say that today, as I write this, I am no longer in daily pain.   My fibromyalgia trigger points are far less tender, I have almost no rib and lower back pain, and I manage to keep up a somewhat busy schedule on 8 to 9 hours of sleep a night. I’m living well.

So, right now it appears that I’m not battling an active case of CFS or fibromyalgia. I couldn’t be writing this book if I did, because at those times I was actively symptomatic, I was so exhausted that I could nod off in seconds while looking at a computer screen. I couldn’t concentrate enough to put together a coherent paragraph. I would read the same few pages of a book or article over and over for hours, unable to absorb the meaning.

While not actively symptomatic, I am, however, constantly on the alert for evidence that I am overdoing it, for even the earliest signs that my health is going to collapse on me, as it has done before, and launch me into an episode of CFS or fibromyalgia. I am like a thermostat, constantly monitoring my sleep, energy levels and diet, and making adjustments every day. Some days I need to get extra sleep, others I slow down my exercise routine, add special supplements, or adjust the protein levels in my diet. The objective: to ward off any decline that could move me into chronic fatigue and body pain, and ultimately, back into full-scale CFS or fibromyalgia.

Moving Forward

My hope is that you move forward after reading this book with an understanding that you are the key to living well with CFS or fibromyalgia. You will need to trust your own instincts, find the right practitioner to be your partner in wellness, and use your own judgment to choose from among your options in terms of treatment.

I also hope that you will come away from this book aware of the many options – from prescription drugs, to vitamins, to supplements, to bodywork, to nutrition, and more – that can help with CFS and fibromyalgia. And, armed with that knowledge, that you’ll be able to put it together, with the aid of your practitioner, into a plan that will work for you.

You deserve to live well.