Pain Diaries Book Excerpt
Hans C. Hansen, M.D.

Fibromyalgia
Fibromyalgia is more than less of a syndrome. We name syndromes in medicine to associate more than one problem to a specific diagnosis. Fibromyalgia is a diagnosis. Although much maligned and criticized, the official definition from the Copenhagen Declaration of 1993 established fibromyalgia as a disease entity. Fibromyalgia is primarily pain, but as anybody that suffers from this disease knows, there is so much more. Fatigue, poor restorative sleep, headaches, irritable bowel, frequent pelvic and bladder pain, and migraine headaches. Although not the classically predominant symptoms of fibromyalgia, I refer to these as the Fibro-5: headache, chronic fatigue, irritable bowel, and pelvic pain (or interstitial cystitis). These problems are devastating, and truly alter the life experience. This is the fibromyalgia syndrome. Pain and the helplessness of marginal relief and, more often, disbelief.

The American College of Rheumatology (ACR) in 1990 explained the "presence of unexplained wide-spread pain or aching, persistent fatigue, generalized morning stiffness, poor restorative sleep, and tender points". The ACR defined 11 tender points that had a consistent statistical relationship to patients presenting with this syndrome in the rheumatology clinic. We now believe that abnormal pain processing mechanisms are at the root of fibromyalgia. Fibromyalgia sufferers have a low pain threshold and a high discrimination of pain.

For well over 10 years this disease has been recognized in the world literature. Unfortunately, a very small number of practitioners are experts in the field, and little training in medical schools and residency programs teach important treatment options to improve quality of life. In 1987, the American Medical Association legitimized fibromyalgia syndrome by recognizing it as a disease state.

Fibromyalgia is called many different names. This leads to further confusion. Fibrositis, myofascial pain, myofascial pain syndrome, psychogenic rheumatism, fibromyositis, myofasciitis, tensionmyalgia, psychological muscle disorder, and muscular fatigue syndrome are terms that have been associated with fibromyalgia. Only recently are the terms fibromyalgia and Myofascial Pain Syndrome settling as the most acceptable in our understanding of definitions. Fibromyalgia syndrome is the most useful term due to the many associated symptoms found with this disorder.

Obviously, fibromyalgia is not a new disease and has been described for well over 100 years. For example, a man named Gowers, era 1904, used the term Fibrositis when describing back pain or "lumbago". This is an example of concomitant fibromyalgia. Fibromyalgia with another disease. It has been my experience that most fibromyalgia has an underlying concomitant problem, most commonly, back pain. In the 1960's, the term Fibrositis evolved into generalized musculoskeletal aching, poor restorative sleep, chronic fatigue and multiple tender areas of pain. M.B. Yunus moved this disease forward by associating demographic features such as age, sex, and race to well-designed studies that truly helped validate this disease in the medical literature.

Fibromyalgia has been broken down into different categories. Regional fibromyalgia, or myofascial pain syndrome, which limit tender points to a few locations only. Primary fibromyalgia is most common to those that are seen in my clinic. Primary fibromyalgia is widespread pain and aching in most of the tender points, but in reality, is "pain everywhere". Secondary fibromyalgia is activated by an associated symptom, such as back pain, rheumatoid arthritis, hypothyroidism, or trauma, to name a few. Finally, concomitant fibromyalgia refers to fibromyalgia intermingling with another unrelated disease. It's useful to think of concomitant fibromyalgia and primary fibromyalgia as really the same problem. Concomitant fibromyalgia just has a medical condition associated with it.

What we find with Fibromyalgia Syndrome
The Copenhagen definition of fibromyalgia syndrome is outdated. Although a good original attempt to standardize fibromyalgia, simply stating 11 of 18 specific tender points necessary for diagnosis is not helpful in clinical practice. In reality, fibromyalgia is pain all over, a process of increased activity in the nervous system that turns up the pain amplifier. Really, the most predominant symptoms of fibromyalgia are just generalized pain, stiffness, joint pain, poor restorative sleep and fatigue. Many patients also say that they feel bloated or have multiple swelling points, and are anxious to point to new areas where they are "swolled up". Well over 50% of fibromyalgia sufferers complain of back pain.

Another very common complaint is chest pain. Cardiac disease must be ruled out, of course, but most chest pain is related to fibromyalgia itself. Tingling and funny sensations in the hands, feet and extremities are also very common, as is a numbness sensation in the extremities. Nerve studies are usually normal.

Fibromyalgia is cross-cultural, race, sex and age indiscriminate. Although claimed to be a disease of "white, bright" females, fibromyalgia can be diagnosed with any age, any race, sex and social status. Primarily it is a female disease of white race, but this may be due to sampling bias. Age at onset is most notably between 30 and 50, but fibromyalgia patients will regularly relate to problems to early childhood. Irritable bowel, frequent headaches, fatigue and unexplained muscle pains were brushed off as "growing pains".

Symptoms of fibromyalgia are as variable as those describing them. If we stick to the Fibro-5 as being the most useful to work from, the disease is a process of abnormal signals in the central nervous system. Simply put, however, fibromyalgia is a pain of multiple sites. This is the first and foremost diagnostic criterion and the one most easily overlooked. It's too simplistic to say there are 11 tender sites, or it must be on both sides, or that it can't possibly be present unless there are other associated problems like fatigue and poor sleep. Fibromyalgia is "hurting all over" and a process of central sensitization. Other consistent and useful symptoms include: swelling of tissues and joints, stiffness, tingling, anxiety and swollen points. Fibromyalgia is really an easy diagnosis. "I hurt all over, my gut hurts, I can't sleep well, I'm becoming more depressed and anxious, I'm losing control of my life, I have frequent headaches, and sometimes I have pelvic pain -- help!"

Fibromyalgia is either mild or severe. Again, this may be simplistic, but if somebody tells me their lifestyle, activities of daily living, and importantly, they feel they can't go to work because of these symptoms, I label this as severe. Loss of function can be independent of pain, as we'll talk about in later chapters. Pain is a description and not an entity. I don't base severity of disease by description of pain, but instead, by interference of activities of daily living and lifestyle changes. Fibromyalgia is not a benign disease. Benign means that it has very little impact on life experience and is not life threatening. Dr. Jack Kavorkian has assisted suicide in fibromyalgia patients. Patients that felt helpless, hopeless, and obtain little relief. I know people contemplate suicide with this disease. It is not life-threatening by the classical definition, but don't say this to some of our fibro sufferers. This is not a harmless disease.

Laboratory Tests

Hypothyroidism
Hypothyroidism is a diagnosis that is sometimes over-diagnosed, but most commonly misdiagnosed. Fibromyalgia patients must have a diagnosis. Simply to use fibromyalgia as a "wastebasket" diagnosis and not explore other concomitant problems that may exist is not responsible. In fact, a qualified medical doctor or a doctor of osteopathy must make this diagnosis and objectively rule out other possibilities. I'm frequently asked the relationship to multiple sclerosis, osteoarthritis, lupus, sugar problems, cardiac problems, rheumatoid arthritis, Raynaud's disorder, temporomandibular joint syndrome, overproduction of yeast, chronic fatigue, Lou Gehrig's disease, brain tumor, spine disease and a multitude of other problems. The only way we can really say no relationship exists is to make sure the others don't exist. We do this by defining the diagnosis, a process of differential diagnosis. Medical doctors and osteopaths whose tests and clinical judgments are based on history and physical examination are well trained in differential diagnosis. The fibromyalgia patient deserves their time.

Hypothyroidism is a disorder resulting from low production of the thyroid hormone that is routinely detected in laboratory evaluations. The most common causes are due to surgery, medication (lithium and thyourosil), inflammation of the thyroid gland (thyroiditis), iodine deficiency, dietary deficiency, and failure of the pituitary gland, to name a few. Ordering a screening T4/TSH is a good first approach. Many of the symptoms of fibromyalgia mimic hypothyroid muscular disease. Your doctor should order a screening thyroid test as part of the initial workup of fibromyalgia.

Many of the complaints of hypothyroidism are similar to fibromyalgia. Unfortunately, none of them are specific. In advanced cases, the doctor may find changes in hair, your voice, your thyroid gland size, and your heart muscle. Even reflexes can be affected.

Beginning thyroid replacement medicine usually turns this condition around very quickly. If hypothyroidism is the only reason for muscular complaints (secondary fibromyalgia), the fibromyalgia should clear. This is very rarely the problem, and why I rely on the Fibro-5 so heavily. It is not common to replace thyroid hormone and reverse chronic fatigue, irritable bowel, migraine headache, muscle pain and pelvic pain. More likely, hypothyroid is a concomitant fibromyalgia condition.

Estrogen Insufficiency
Estrogen insufficiency or hormonal changes may affect muscle pain. I've always found it interesting that the disease of fibromyalgia is mostly a female disease, and I suspect someday we'll find an underlying hormonal relationship. It probably is not as simple as either a high or low level of hormones, but how the target cells are affected by the hormones. This may give the genetic support of this disease being hereditary more believability. A study at the Ohio State University in 1989 by Pellegrino, et al, suggested that fibromyalgia is an autosomal dominant, inherited problem. In other words, half the children of fibromyalgia sufferers will develop the disease. I don't find this to be true, and I'll have to be convinced of a pure genetic link.

Cushings Disease
Cushings Disease develops from excessive secretion of a substance called cortisol by the adrenal glands. It is a confusing problem because there's a Cushings Disease and Syndrome. The disease is a pituitary problem, whereas the syndrome is caused by either the adrenal gland secreting too much hormone or another site producing it on its own. The diagnosis is made by a urinary test and Cushings disease does share many features of fibromyalgia. Treated early, the prognosis is very good.

Please share your comments about this chapter draft.   Any suggestions, ideas, etc. are welcome.  Write to: fibrodoc@fibromyalgia.com