Medicine has come such a long way since the time of Hippocrates, the father of medicine (460-375 BC). Over the past 100 years, medical knowledge has grown exponentially; yet, it is ironic that we are only just at the dawn of accepting and understanding a condition that has been with us throughout the ages. Historically, fibromyalgia has been given little recognition let alone validation by the medical community. I have been treating patients with fibromyalgia for over 20 years. I first became acquainted with this condition in 1990, when I was in the first year of my Rheumatology Fellowship at Dartmouth. I had just finished my three-year Internship and Residency training in Internal Medicine. During those tough three years, I was exposed to a vast array of medical conditions; ranging from minor ailments that were addressed in the outpatient clinic setting, to complex medical diseases, many which required management in the intensive care unit. Would you believe, after four years of medical school and three years of post-graduate training in Internal Medicine I never heard of fibromyalgia!
In my opinion, this exemplifies why physicians know very little about fibromyalgia; there has been little opportunity regarding formal training of this condition in medical school and post-graduate medical training programs. I often have wondered how this apparently prevalent condition has “fallen through the cracks” for so many years. I do have a theory about this phenomenon. First, medical students simply are not educated on fibromyalgia because historically there have been few experts in this field. As you already can see we are not off to a good start where, after four years of medical school, the knowledge that a young doctor possesses about fibromyalgia is only minimal at best.
Second is Internship and Residency. For young physicians, who choose to go into fields of medicine, other than Internal Medicine and Family Practice, the potential for these doctors to gain practical knowledge regarding fibromyalgia diminishes with each passing year. For those doctors, who take the plunge into Internal Medicine and Family Practice, it is extremely unlikely they will see a fibromyalgia patient in the hospital, unless they are involved with a patient who is being worked up in the ER or briefly admitted to the medical unit for unexplained pain. These patients quickly are ruled in or ruled out for more serious acute medical conditions. When it is determined these patients are not in acute medical danger, they often are classified as having fibromyalgia, as they are shown out the door of the hospital. Discharge instructions will tell these patients to follow-up with their primary care providers in a week or so.
The primary care providers do not know what to do with these patients. Many are branded as hypochondriacs and malingerers. If these patients are lucky, they may get a referral to see a rheumatologist, but they may have to wait a few months until an appointment becomes available. Many rheumatologists will not accept patients with the diagnosis of fibromyalgia. At this point, given this scenario, it is not looking very promising for patients with fibromyalgia. However, this is the reality of the situation. If you have been keeping track of the years, you are looking at a well-intended physician, who after four years of medical school and three years of Internship and Residency training (seven years in total), who may have virtually no knowledge, let alone experience, in treating fibromyalgia and that is a scary thought! By the way, after a doctor completes the hospital training program, it is quite possible one of the first few patients who walk into the physician’s office will have fibromyalgia; the patient who was sent home from the ER the previous week! This begins the start of a long relation¬ship of mutual frustration between the physician and patient. I really do believe this represents the life cycle of the fibromyalgia patient and the medical community. By now, you are probably wondering if there is anyone out there who can help people (you) with this condition. The answer is “yes,” but it will not be easy. This is my reason for writing this book. Physicians need to be educated about this condition. Patients with fibromyalgia need to be embraced. The present disabling life cycle of fibromyalgia needs to be broken. I know I am not the only rheumatologist or medical physician who has been treating fibromyalgia patients for many years. I know what I have learned from my patients and I am thankful to them for that. I have treated several thousand patients with fibromyalgia and other chronic painful conditions, and the vast majority of them have done quite well. Let us read on and see where you stand with these conditions, and see where you can begin your journey to liberate yourself from pain..
What Exactly Is Fibromyalgia?
This certainly appears to be a simple question, but in fact, the answer is quite complex. I often have looked at other people’s definitions of this condition. Textbooks say one thing, not much, while self-proclaimed authorities, many of them non-physicians, have written books, and of course there is the Internet, where if it is “on-line” it must be true. On occasion, while strolling through Barnes & Noble, I would thumb through the section of books on fibromyalgia, whose numbers seem to be growing annually, and I have yet to come across a book that really delves into the therapeutic management of this condition. How can one expect a nutritionist or chiropractor or psychologist (just some of those who have authored books on fibromyalgia) to be an expert on the management of fibromyalgia when they are not physicians? Most physicians do not know much about fibromyalgia, but at least they can write prescriptions for treating this condition. There may be a few patients with fibromyalgia who can derive benefit from a holistic approach towards the treatment of their condition, but they are few and far between. I am going to cut to the chase on this issue; the vast majority of people with fibromyalgia need to be on a patient-specific medication regimen to effectively control their symptoms, but I have not seen much written about the specific medication regimens that are necessary to effectively treat fibromyalgia.
There may be several reasons for this. I believe that even in well-established medical communities in large urban and suburban regions, there are only at best a handful of doctors who know how to treat fibromyalgia. If we concentrate on just the physicians who treat fibromyalgia, the ones who really know what they are doing, you will begin to understand that these are unique practitioners; their patients and referring physicians are well aware of this fact. These are physi-cians, who for years, have been thinking and practicing medicine, in a good way, outside of the box.
Before the summer of 2007, there were no FDA (Food and Drug Administration) approved medications for the management of fibromyalgia. At the time of the writing of the second edition of this book (as with the first edition), there are still only three medications that are specifically approved by the FDA for the treatment of fibromyalgia. It is important to note that these three medications have been on the market for years, but the FDA had approved them for the treatment of other conditions. I will discuss these medications and others later in the book. I have been prescribing these medications and many others for some time for the management of fibromyalgia. [Note: When a medication has an FDA approval for the treatment of a specific condition, and the physician chooses to prescribe that medication for another condition, this is known as “off-label” prescribing of the medication.]
Ironically, in my opinion, there are plenty of effective medications on the market (brand names and generics) to effectively treat fibromyalgia. I have been having significant success treating my fibromyalgia patients with medications that are already on the market, some of which have been around for decades. In order to successfully treat this condition, the physician has to know what to look for and how to clinically approach the patient suspected of having fibromyalgia.
Patients are frequently referred to me because of “chronic pain.” These may be individuals who for years have been dealing, most unsuccessfully, with chronic discomfort. The ways in which these patients have been managed by the referring physician varies greatly. It is amazing and sad how people can be managed ineffectively for years. I always wonder one of two things: why these physicians did not refer these patients out sooner; or why these patients did not, on their own, seek out more effective management?
In reality, the answer to this question is rather complex, and in most cases, no one is to blame. It can be quite frustrating for the general physician to manage patients with chronic painful conditions; many are uncomfortable treating these patients. If a doctor is to be effective, in managing patients with chronic painful conditions, they have to be comfortable, particularly in the prescribing of narcotics. There are plenty of patients who are, in fact, appropriate candidates for the prescribing of narcotics. In my opinion, if a physician, for what¬ever reason, refuses to incorporate the judicious use of narcotics in their practice, they will be ineffective in managing chronic pain in a fair number of patients who fall into this category.
How does a physician begin to develop a productive working relationship with the patient with chronic pain? It does not take long during the initial visit with a new doctor to get a sense where this new relationship is going. The attitude of both parties (physician and patient) is extremely important during the first visit encounter. A doctor, who is comfortable treating patients with chronic painful conditions, will not feel intimidated when a new patient comes to their office complaining of chronic discomfort with years of prescribed narcotic usage. Sometimes a patient on a complex pain management regimen actually will discharge their primary care physician, and seek help from a different primary care physician. The problem, in this situation, is the new primary care physician may be uncomfortable with prescribing opioids (narcotics), and the patient is right back where they started. Often, doctor offices have signs posted in the waiting room stating they do not prescribe narcotics. They tell the patients that they will manage all of their other conditions and write prescriptions for their other non-pain management medications. The only good thing for the patient in this situation is that these doctors tell their patients up-front they do not manage chronic pain, and they usu¬ally have a pain specialist to whom they will refer them. My approach, to the patient who comes to my office complaining of chronic pain, is quite simple. I need to spend at least 50 minutes with a new patient. I want to review the records the patient has brought with them. Patients will sometimes get upset if their records were not sent to my office ahead of time. Patients usually know what tests were done and their results. I am often quite effective with making a diagnosis on the basis of taking a good history from the patient followed by a careful physical examination. Personally, I feel it is important for the doctor to obtain the history from the patient, and it goes without saying that the doctor should perform the physical examination.
In order to effectively manage the patient, with a chronic painful condition, the clinician has to determine the etiology (cause and origin) of the pain. Not all painful conditions are fibromyalgia, but patients with chronic painful conditions often have fibromyalgia. To determine if someone has fibromyalgia, the physician has to have a good understanding of what to look for. So, here is the million dollar question (which due to inflation, a struggling economy, and after taxes is really worth about half a million dollars).
What is fibromyalgia? The answer is rather straight-forward. Fibromyalgia is a syndrome. What is a syndrome? A syndrome is a collection of clinical features which as a whole defines a medical condition. Now that you know the definition of a syndrome you can begin to understand, and possibly identify, this condition in yourself; however, do not take it upon yourself to start diagnosing your family and friends. It is alright for a patient to have an understanding of a condition before going to a doctor. Just remember, you will not be an instant expert, and keep in mind a competent physician, during the course of an initial evaluation, will be considering other diagnoses too. I often have patients who either are referred to me, by their primary care provider or come on their own, telling me they think they have fibromyalgia, and they are usually right!
The most common scenario, regarding the fibromyalgia patient, is they are referred to me with the presumption of another diagnosis, such as, rheumatoid arthritis or lupus; the patient will say to me their blood work showed one of these two conditions, and I was going to treat it. This is a perfect example of a referring physician innocently missing the boat. An abnormal blood test certainly does not make a diagnosis. A positive rheumatoid factor (one of the blood tests used to diagnose rheumatoid arthritis) does not necessarily mean a patient has rheumatoid arthritis. A positive ANA (antinuclear antibody), a test used to diagnose lupus and other connective tissue diseases, does not mean a patient has lupus. The results of these tests can certainly mislead the practitioner who ordered them, not to mention scaring the patient.
It may take several months for a new patient to get an appointment to see a rheumatologist, and during that time they are worrying about a condition they really do not have. To make things worse, for the last several weeks, they also may have been on the Internet learning all about “their new condition” including both accurate and inaccurate information. Now, my job has the added complexity of deprogramming these patients and explaining to them what they really have. My favorite situation is when the primary care physician tells their patient they have a connective tissue disorder (such as, rheumatoid arthritis, lupus, or another diagnosis that falls under my field of expertise), and the patient chooses to embrace an inaccurate diagnosis by their primary care physician after I have told them they do not have that condition! Now, they think that I do not know what I am talking about!
At the end of the day, fibromyalgia is a clinical diagnosis. There are no abnormal blood studies or specific radiographic (x-ray) findings that establish a diagnosis of fibromyalgia. Fibromyalgia is not an inflammatory condition. I will say it again (this is a very important concept), the diagnosis of fibromyalgia is made on a clinical basis. Complicating the picture is the fact that fibromyalgia often co-exists with other medical conditions, and other conditions can have clinical features consistent with fibromyalgia, more about this later.
What is the constellation of historical and clinical features that add up to make the diagnosis of the fibromyalgia syndrome? The most common feature, in patients with fibromyalgia, is their inability to obtain a restful night of sleep. One of the first questions I will ask a new patient is about their quality of sleep. How do you sleep at night? Do you have difficulty in getting to sleep, staying asleep, or a combination of the two? The vast majority, of fibromyalgia patients, will respond by telling me they sleep poorly. It is interesting to note how many times patients tell me that this conversation never came up with their primary care provider. Some patients will tell me they sleep well. This, however, should not be the end of the line in questioning the patient suspected of having fibromyalgia.
Living With A Chronic Painful Condition
There are a lot of people out there who live and suffer with pain on a daily basis. I see these people in my office every day, and I am sure there are considerable numbers of people who suffer in silence. Whatever the cause of the “chronic pain,” at this point, it is not going away of its own accord. By virtue of the fact that we call the pain “chronic,” there should be an understanding it is here to stay. This, however, does not mean you have to be suffering chronically.
How do you know if your problem is chronic? By the time people usually get to see me, their pain is chronic, and this is not because it took so long to get an appointment. Painful injuries and processes which tend to resolve over a few weeks to a few months fall under the category of “acute;” there is an endpoint to the pain; and the process is expected to heal. We have all experienced this type of pain: an uncomplicated broken bone, post-surgical pain, bursitis, tendonitis, sprains and strains. These conditions tend to be self-limiting, as they do get better on their own or with the help of a medication that is not expected to be used on an ongoing basis. Some self-limiting conditions may take months or even up to a year to settle down. It could take up to a year for a back surgery to feel good. Unfortunately, even with the most skilled of surgeons, back surgeries are often not helpful and sometimes the patient is even worse after the surgery. A hip or knee replacement may take up to a year to feel like it has always been there. The point is, self-limiting pain, from a sense of time, can have a chronic component.
In my practice, I see a lot of patients who suffer from chronic pain. I am not referring just to my fibromyalgia population. Many of these patients may have secondary fibromyalgia. [Note: This refers to fibromyalgia that has developed as a secondary process to an underlying painful condition.] One of the most common types of patients, who I see, is a person who suffers from chronic lower back pain. There are many causes of chronic spinal pain. Aside from the lower back, many suffer from upper back pain and less often from mid-back pain.
As we advance this discussion on chronic pain, it is important to quickly review some pertinent points regarding the body’s anatomy. The spine extends from the base of the skull to the lower region of the tail bone. The medical terminology for the upper portion of the spine is the cervical region. This consists of seven cervical vertebrae and from the top to the bottom they are numbered: C1-C7; the C stands for cervical. Moving downwards, along the spine, is the thoracic region (thoracic spine). There are twelve thoracic vertebrae and head¬ing from north to south they are numbered: T1-T12. Moving further, south, are the lumbar vertebrae, totaling five in number: numbered as L1-L5 (where L5 is at the lowest portion). The short bit of bone below L5 is the sacrum, commonly known as the tail bone. The spine is full of vertebrae and a whole lot of other structures (disks, ligaments, blood vessels, closely associated muscles, and do not forget about the spinal cord and all the nerves exiting through passages created by one vertebrae in close proximity to another).
In order to feel pain, you have to have a nervous system. The central nervous system is the brain. It is the brain that processes all types of stimuli which is fed to it from the peripheral nervous system, that is, nerve tissue that resides outside of the brain. As a general rule, nerve tissue (nerves) runs parallel and in conjunction with blood vessels (arteries and veins). This is why when you cut yourself, not only do you bleed, but it hurts too! There is a reason for this short “basic” course in anatomy. To understand pain, you need to have some understanding of the nervous system. You will begin to see how pathology (abnormal anatomy) can lead to pain. In order to effectively treat pain, the physician/healthcare provider has to know what is wrong before an attempt can be made to try to effectively address the problem.
Keep in mind, throughout the course of this book; I just want to remind the reader that my writings are based on my observations and practical treatment of thousands of patients since 1990. After so many years, you tend to see the same problem over and over and hopefully have gained good practical knowledge and success from the experience of treating all of those patients. [Note: In no way, do I want to minimize the suffering of chronic back pain; I embrace people with this problem.] The fundamental concept, of patients with chronic pain, is that they will need medication therapy. The specific types of medications will be discussed later in the book. Of course, it is not my mission to give everyone, who walks out of my office, a prescription or two or three, etc. I can tell you from my experience, for the average person with a true chronic painful condition, who walks through my door, conservative modalities are not going to cut it. Besides, most of these patients have been there and done that, and are at a point where their primary physician does not know what to do with them. Some come to me on their own, because they are in constant pain, and their healthcare provider has told them essentially, there is nothing more they can do for them.
Aside from painful spinal conditions, people have chronic pain for a variety of reasons. I often manage patients with chronic pain in a limb. This can be caused from an injury, such as, from a motor vehicle accident. Most doctors do not want to be involved with injuries resulting from accidents because there is often litigation in the process, and several months or even years later the physician may be drawn into the legal process (depositions, short and long-term disability claim forms and possible in-court testimonials).
Often diabetics have limb pain because of peripheral neuropathy and this can be quite debilitating. I also see a lot of patients, who just experience chronic generalized pain, which is not fibromyalgia. This is extremely difficult to treat because of the subjective nature of the pain. Usually, there is nothing focal (localized) with regard to their pain. They usually have normal blood work and all investigative studies, such as CT and MRI scans, are all normal. Sometimes, more invasive tests are done and here, too, the findings are normal. Is it possible to have chronic generalized pain with normal studies and a normal exam? The answer is “yes,” but good luck with getting appropriate treatment when you walk into most doctors’ offices with this set of medical features.
Of course, there are a small percentage of patients, who do present with vague symptoms, with normal lab and clinical findings and the answer is not a medication. Some patients complain of pain, but further digging, into the family circumstances, reveal a family dynamic is at the basis of the visit. I sometimes have to point this out to the patient and family member or members who are present; often with a mixed response from the parties, who are present. Sometimes, I will tell a patient, on their first visit, I am not able to help them. In this case, it is usually because they need to be seeing someone else (counselor or psychiatrist). I am not telling these people there is nothing wrong (something is always wrong), it is just that I am not the most appropriate person, to treat them, for their ailment.
Who gets chronic pain? Anyone can. My medical practice has been and continues to be devoted to the adult population (18 years and older); it should be understood that the comments in this book are directed to the adult population. Pain is non-denominational and presents without discrimination. I treat patients with chronic pain ranging from eighteen years old and upwards. These are people who have chronic painful conditions, which just are not going to go away, without some type of medical intervention.
Keep in mind, the term “medical intervention” does not mean necessarily the use of prescription or, for that matter, non-prescription medication. Medical intervention can involve counseling, qualified medical manual manipulation, ultrasound treatment, physical therapy (which includes all of their therapeutic modalities: ultrasound, massage, traction, heat and ice applications and most important, the instruction on how to properly perform physical exercises).
There are many components to the disposition of people living with chronic pain; the source of the pain makes no difference. Some people suffer from localized pain, while others from more nondescript generalized discomfort. The common thread, with these people, especially by the time they get to my office for evaluation and treatment, is that there is often an element of depression (regardless of which came first; the pain followed by depression or depression followed by pain). There tends to be anger, sometimes directed at me, during the first few minutes of the initial evaluation. Keep in mind that it would be in your best interest to be civilized with the doctor who holds the great¬est chance of helping you. You do not want that visit to end with the doctor telling you that you would be better suited to see someone else, because of incompatibility issues. These patients often feel hopeless, helpless and abandoned by the medical community. On the initial visit with me, I listen closely, review available records, perform a pertinent physical examination and most importantly, I validate their suffering. I tell them, I truly want to help them with their pain, which really is true, and I will work diligently with them to improve the quality of their lives. Believe it or not, making significant improvements in treating chronic pain is not difficult if you are an experienced doctor, who knows how to treat chronic pain.
People with chronic pain are actually quite patient, considering what they have been dealing with, often for years. These patients understand their pain will not go away overnight; or perhaps ever, if at all. What they are looking for is an honest attempt to help alleviate the “degree” of suffering. Chronic pain management is all about “relative” levels of improvement. By the time many patients get to my office, they feel the visit will be an exercise in futility and I can under¬stand why. Many have been to chronic pain clinics and specialists, but unfortunately, have not been helped; in spite of what I would consider, on the basis of their medical history, a good attempt.