WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT (TM): FIBROMYALGIA

CHAPTER 1

AN INVITATION TO JOIN US AND FIND YOUR WAY BACK TO HEALTH

It can start off subtly: a bit of muscle pain, along with some generalized aches and stiffness. Then there are periods when concentration is impossible, a day or two of overwhelming fatigue, and maybe a little dizziness, heart palpitations, irritability, and anxieties. Irritable bowel and digestive woes can flare periodically. Symptoms come and go at first, and it’s easy to chalk them up to a mild case of the flu that never quite fully develops. You, like most individuals, tend to blame stress or overexertion for these strange little complaints.

Then one day, you realize one part or another of your body always hurts. You’re often confused, short of memory, unable to concentrate, and you’re always stressed and feeling as if you’re at the end of your rope. You wake up tired every morning no matter how much sleep you’ve had—or you may have difficulty sleeping at all. Your symptoms begin to worsen, and you notice new ones: depression, numbness and tingling of the hands, leg cramps, headaches, abdominal pains, cramps, constipation taking turns with diarrhea, or bladder infections. Now you notice that you can no longer sleep through the night. Sometimes pain keeps you awake; most of the time, though, you don’t know what causes the insomnia or what keeps waking you. And what causes your craving for sugar and starch? Why is it that you haven’t changed your eating habits, but you still gain weight? You’ve accumulated enough bad omens that you aren’t too surprised when bad days outnumber the good ones. Eventually you just cycle from bad to worse. When you look back, nature gave you ample warnings.

You become increasingly immobile, and unconsciously you stop making plans with family and friends because you don’t know how you’ll feel the next day—or the day after. Go supermarket shopping? You’re kidding. That’s just one of the many chores you’ve come to dread. At least you now have the time to review the long list of doctors you’ve visited. Each time your hopes have been dashed despite the number of tests you’ve taken and the many tubes of blood you’ve sacrificed. Sure enough: Results are always normal. Increasingly, doctors are making the diagnosis despite the unrevealing tests and will offer a sequential array of failed drugs. But some will still escort you out of the office and point to the nearest psychiatrist; a few will admit that nothing much will help you but you could do a trial of this or that newest drug. As a result, you may have subsidized your neighborhood health food store or internet vendors by consuming your body weight in various vitamins and supplements. You may have googled your symptoms and found frustrating and contradictory explanations for them. Possibly you have even ordered and tried a “miracle cure” or two. WebMD and Livestrong.com have not had much to offer, but sometimes you still try looking for help on websites.

Your life has entered a downward spiral into more pain, depression, and fatigue. Some of you may be nearing rock bottom. You reproach yourself for everything. Your lament includes a review of all of your inadequacies and poor coping abilities. You put yourself on trial for repeatedly letting down family and friends. You feel as though you’ve damaged their lives and your own.

Wounded relationships are the most damaging side effect of fibromyalgia. You’re not the person your spouse married, and you know it. You fret and sputter about your fragilities, but you can’t seem to correct them. You’re depressed especially when you look at your children and the parental deprivations they suffer. Suicide may have crossed your mind, but you know that’s not the solution. Okay, enough already with the remorse!

Fibromyalgia is widespread in all ethnic groups in all parts of the world. In North America, it’s generally estimated that about 5 percent of the adult population suffers from it. Since the early cases are not being diagnosed, we feel that over 10 percent of women and 5 or more percent of men are affected. Using our guess, over twenty million Americans suffer from fibromyalgia—about 85 percent women, although men are more likely not to be diagnosed. Fibromyalgia is the most common disorder seen by rheumatologists.¹ It’s further thought that chronic fatigue syndrome affects twenty-five million people. I and many other physicians consider the two the same disease. Blending the entities into one would augment the percentage of people with fibromyalgia. We’ll develop the thought later on, but we have enough observations to conclude that today’s fibromyalgia is the prelude to tomorrow’s osteoarthritis, something that affects nearly 40 percent of older people. Adding up combinations of those numbers would lead us to conclude that nearly one third of our population will, even if just mildly, suffer some symptoms of fibromyalgia in their lifetime.

In 1843, Dr. Robert Froriep published his observations about the condition we now call fibromyalgia. For centuries, all sorts of muscle pains had been lumped together and called rheumatism. There were no blood tests to separate out things like rheumatoid arthritis, polymyalgia, and lupus. There were no imaging studies to diagnose disk problems in the back and no nerve conduction studies, so doctors relied on physical examination and observations. Froriep described a subset of patients with what he observed as “rheumatism with hard, tender places,” which he could feel in many locations on the body. As a result, in nineteenth-century Germany fibromyalgia was called soft tissue arthritis. Unfortunately as time went by the word hard (swollen) was forgotten, so the muscle examination was replaced by a search for tender points.

In the early 1900s, Sir William Gowers over in London studied his own lumbago. He observed symptom clusters in his patients, and dubbed the disease fibrositis assuming there was some sort of inflammation he could not measure causing the problem. (This name stuck for the next eighty years or so even though it was subsequently revealed that there was none.) Dr. Gowers also observed that his patients were exhausted and that the disease was “so painful it would make a strong man cry out.” He tried everything he could think of in an attempt to relieve this pain, including injecting cocaine into the tender points (it didn’t work very well). He also gave his patients a newly discovered drug, aspirin, and noted that it didn’t work very well, either.²

In the 1960s, Canadian doctor Hugh Smythe wrote an article about fibrositis that was published in a textbook. He is credited with bringing the disease into the modern spotlight. He is also the man who made tenderness a criterion for fibromyalgia; previously, tenderness was not mandatory to make the diagnosis. His colleague Harvey Moldofsky would introduce the concept that nonrestorative sleep was a hallmark (and perhaps causative). This, too, remained a part of the official criteria from then on.

Fibromyalgia, a coined word that suggests “pain in muscles and fibers,” has now replaced the previously popular names fibrositis and rheumatism dating back to the American College of Rheumatology’s publication in 1990. On New Year’s Day 1993, the World Health Organization (WHO), as part of the Copenhagen Declaration, officially declared fibromyalgia a syndrome (a medical condition made up of a cluster of accepted symptoms) and the most common cause of widespread chronic muscle pain. The WHO incorporated the American College of Rheumatology’s 1990 list of the distinguishing features of fibromyalgia as penned by Drs. Muhammad Yunus, Hugh Smythe, Frederick Wolfe, and others.³ The biggest part of this was the concept of the eighteen most frequent locations of tender points dispersed over the bodies of fibromyalgics, with a symmetrical distribution of nine such on each side, some in all four quadrants. The criterion they created was that at least eleven of these should be sufficiently tender when prodded with a certain amount of pressure. These tender points would become the major diagnostic point until 2010, when the criteria were amended to address the complaint that the other symptoms of fibromyalgia were not included.

But the World Health Organization went a little farther. The Copenhagen Declaration added: “Fibromyalgia is part of a wider syndrome encompassing headaches, irritable bladder, dysmenorrhea, cold sensitivity, Raynaud’s phenomenon, restless legs, atypical patterns of numbness and tingling, exercise intolerance, and complaints of weakness.” It also recognized that patients are often depressed.

In 2010, new criteria for identifying fibromyalgia would make an appearance. Physicians were instructed to also accept six self-reported symptoms (difficulty sleeping, fatigue, poor cognition, headaches, depression, and abdominal pain) as well as nineteen pain locations, while also recognizing that not all patients experience pain in the same way. “Women are more tender than men; men often don’t get diagnosed,” explained one of the authors, Robert Bennett. “Even for women a clinician could identify a sufficient number of tender points to make a diagnosis one day but the next clinician could fail to do so. The patient goes from having fibromyalgia to not having fibromyalgia.” The tender points were thus abandoned. It had become clear that the number and intensity of symptoms were the identifying characteristics of fibromyalgia.

In 2016, another revision was made in order to clarify generalized pain complaints in patients. Again, no mention is made of the tender points, simply “generalized pain defined as pain in at least four out of five regions” that has been experienced at a similar level for at least three months. Patients must experience widespread pain on an index of less than or equal to 7 and a few other numbers. So perhaps the takeaway lesson is simply that there is not exactly an agreed-upon definition of fibromyalgia. It has been changed by the efforts of patients, examining doctors, and even pharmaceutical companies.

Still, today fibromyalgia is almost universally recognized as a distinct illness and taught in medical schools. Sadly, there remain a few uninformed but increasingly rare doctors who still tell patients that it’s just a catchall name for symptoms shared by a bunch of neurotic women. Were that true, I would have long since gone fishing!

Despite all the research and speculation, fibromyalgia remains poorly understood. It’s a complex and chronic disease that causes widespread pain and profound fatigue. Its range of symptoms makes simple, everyday tasks daunting or difficult, and often impossible. There are no outward manifestations and no tissue damage, making it one of the so-called invisible illnesses. But it is very real.

People who enjoy semantics will argue whether we are dealing with a condition, illness, syndrome, or disease. If you are unwell, you have a condition that causes your illness. Disease suggests lack of ease. Symptoms and findings that regularly appear together often enough are regularly grouped in medical terms as syndromes. Use any of those according to your preference or simply acknowledge that you’re sick.

Many publications list the symptoms of fibromyalgia, most of them incompletely. Because of this, in some ways, it remains a phantom illness with very few physical findings according to medical literature, though not so to a trained examiner. Though we’re closing in, there are no well-accepted validating laboratory, X-ray, or scanning techniques to give physicians an unchallenged diagnostic footing.

A well-conducted medical history, all by itself, will uncover the cyclic and progressive symptoms that point directly to the diagnosis. When coupled with a physical muscle evaluation (looking for those hard, swollen, and often tender areas described earlier), an accurate diagnosis is easy to make. People with fibromyalgia have severe problems in multiple areas that are always different from those without the disease. Diagnosing requires listening on the part of the doctor because patients have so many complaints, but there are differences that make fibromyalgia unique. If you ask people with rheumatoid arthritis where it hurts, they most often report problems in their affected joints. Though fibromyalgia patients can experience this, they also have pain in different, uncharacteristic regions. Fibro patients are particularly tender when examined in specific spots, and present hard areas of contracted tissue in the muscles; neither is seen in rheumatoid arthritis patients. So it’s not that hard (actually, it’s easy!) to identify fibromyalgia if you stop and listen and then examine the muscles themselves.

The often used physical examination—eliciting tenderness by poking fingers at certain spots—luckily has been officially discontinued as part of the diagnostic criteria. Yet doctors who are not specialists may not know this and persist with this type of exam. Obviously it is far from perfect and totally falls apart in someone with a high pain threshold or someone taking heavy pain medication. Our method of examination involves sliding our hands along body surfaces, looking for any swollen joint, muscle, tendon, or ligament. Though this does not rely on the patient’s expression of pain, we continue to do it. We mark the findings on a printed body caricature—a technique we call mapping.

Is there an accurate blood test for fibromyalgia? From reading the internet, you get the impression that one exists and that it is more accurate than the diagnostic criteria above. But is that true?

In December 2012, a study was published in BMC Clinical Pathology.⁴ The authors measured cytokine levels in the blood of 201 subjects (110 with fibromyalgia). They concluded, “The cytokine responses to mitogenic activators of PBMC isolated from patients with FM were significantly lower than those of healthy individuals, implying that cell-mediated immunity is impaired in FM patients. This novel cytokine assay reveals unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM” (emphasis added). In other words, even though it’s claimed that the blood test will identify fibromyalgia, an exam and medical history have to be used, too. The blood test claims 93 percent sensitivity.

But is it accurate? Cytokine levels are abnormal in many physical and mental conditions. The original study of 110 fibromyalgics compared them solely with the same number of people who had not been diagnosed with the disease. After intense criticism, the authors added tests on twenty-five people with rheumatoid arthritis and twenty-five with lupus. Although they admit that some medications might have colored the results, they did show that the profiles were different to 97 percent specificity.

Another criticism is that the authors provided almost no information about patient selection or other vital data for a comparison trial. The well-accepted CONSORT (Consolidated Standards of Reporting Trials) statement offers guidelines on reporting of data, but these guidelines were not followed. Critics (not just us) have pointed out that as a clinical study, it was very poorly planned and carried out. As a pathology report it might pass muster, but the data did not in any way address the validity and reliability of the test.

In addition, it’s been pointed out that the paper was published only after the authors asserted there was no conflict of interest. They did not disclose that they were about to file a patent for a kit that performs the tests outlined in the paper. Since there was (and is) a lot of money at stake for the company and for author Dr. Bruce Gillis, it is certain that the publishers would have appreciated knowing that. This ethical violation would have resulted in most publications withdrawing the paper.

The test currently costs about $950 and is covered by some insurance companies. If your doctor won’t order it for you, Dr. Gillis will. You have to take the kit to a lab for blood drawing, which will add to the cost. (The test is now available around the world.)

Most of those who take the test plan to use the result, if positive, to file for some sort of assistance such as disability. However, a positive result on this test is far from a slam-dunk. The test is not able to determine the severity of your disease or how incapacitated you are. You’ll still need a doctor’s examination, notes, and observations to qualify.

The bottom line is that if you want to find out if you have fibromyalgia, you can do that in less time than it takes for blood to be drawn!

Although fibromyalgia is not a terminal illness, it is a demoralizing and debilitating one. The physical symptoms can be unbearable, and depression and anxiety accompany them. Psychology Today