OK, so now I've been diagnosed with fibromyalgia. Although my physiatrist was excited to finally have a diagnosis and, I guess, an explanation for my strange reactions and symptoms, the more I read about this syndrome the less I liked it. Basically, fibromyalgia is more of a "syndrome" than a "disease", in that it constitutes a bunch of problems that are lumped together under the term "fibromyalgia." In a nutshell, fibromyalgia is a chronic pain condition that causes widespread musculoskeletal aches, pain, and stiffness; soft-tissue tenderness; general fatigue; and sleep disturbances. The muscle pain, which is really the hallmark of the disease, is widespread in that it is found in muscles around the body, and most commonly as "trigger" or "tender" points -- those small contraction knots I mentioned earlier. And the fatigue is sometimes considered a part of fibromyalgia, and sometimes the key symptom of fibromyalgia's kissing cousin -- chronic fatigue syndrome.
Of course, no one knows exactly what causes fibromyalgia. It was previously a diagnosis of exclusion, meaning that when the doctor had ruled out more serious diseases like cancer or arthritis or what not, and the patient was left with idiopathic (unknown cause) widespread muscle pain, the diagnosis would be fibromyalgia. Then, in 1990, the American College of Rheumatology established the following two diagnostic criterion:
1) widespread pain in all four quadrants of the body for a minimum of three months duration; and
2) tenderness or pain in 11 of 18 tender points (shown in the diagram below) when
pressure is applied.
Note that the diagram is a woman. This is not surprising, considering women with fibromyalgia far outnumber men. But, consider that women also comprise the significant majority of all autoimmune diseases (e.g., lupus, rheumatoid arthritis, multiple sclerosis, scleroderma, Sjogren's syndrome, etc.), and you quickly realize something specific is going on. Clearly there is a gender-based explanation for autoimmune disease, which I do have some thoughts on based on experiences of some of my female friends during chelation (I'll elaborate in a future post). Current research is looking into hormonal differences, like the fact that testosterone seems to "damp down" the immune system and reduce inflammatory activity. Because women have lower levels of testosterone than men, and therefore less of this protective effect, they might be more prone to suffer autoimmune diseases for this reason. In any event, clearly men can have these autoimmune-type problems as well, as there are plenty of men with multiple sclerosis, fibromyalgia, etc.
Sleep dysfunction is thought to be central to fibromyalgia. Basically, a person with fibromyalgia has "disregulated" sleep, meaning they do not obtain much Stage IV sleep (a deep sleep), during which the brain helps repair the daily wear and tear of the body. During sleep, persons with fibromyalgia are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep. From personal experience, sleep is shallow, interrupted, and not refreshing. You wake up in the morning and feel like you were run over by a truck. A big truck. It's hard to imagine going to bed and feeling worse in the morning than you did the night before, but for fibromyalgia sufferers, this is exactly what happens. In fact, I always felt very stiff and painful in the mornings -- my muscle pain tends to be the highest right when I wake up. Is it any surprise than that sleep isn't peaceful and restful?
A couple of years ago I read an article in Newsweek that basically traced the history of fibromyalgia (May 19, 2003). For a long time, most physicians did not believe that fibromyalgia was a true illness, and thought that the symptoms were mainly psychological. However, the physiological reality of fibromyalgia has since been confirmed in MRI scans of the brain -- there is clear, observable dysfunction of the pain centers in the brain. (Actually, I've had those centers scanned in my own brain in real time, and in a future post, will describe my experiences with this new pain-management research that was recently featured in Time magazine). In other words, fibromyalgia is a physiological, biochemical disease. And, current estimates put the number of Americans suffering from fibromyalgia at about ten million. Ten million people with a disease that was only given diagnostic criterion in 1990? What is going on here?
How would I describe fibromyalgia? Well, I think the term "achiness" is a good one. Your muscles just ache and hurt in this dull, diffuse way that drives you out of your mind. I quickly discovered that the pain had local "anchors" -- points from which the pain emanated outward -- the trigger points. Then, I found two very useful books on trigger points: (1) The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, by Clair Davies; and a related book, (2) Fibromyalgia & Chronic Myofascial Pain: A Survival Guide, by Devin Starlanyl and Mary Ellen Copeland. These books have diagrams that show trigger points in various muscles of the body, and the associated radiating pain patterns they cause. You see, it turns out that muscles form trigger points in roughly the same areas in different people, as originally discovered by Drs. Travell and Simons, first published in 1983 in the seminal work, Myofascial Pain and Dysfunction: The Trigger Point Manual. It is amazing how you can use these diagrams, together with your pain pattern, as a map that allows you to pinpoint the originating point (trigger point) of that pain. And, uncannily, the diagrams are almost always accurate. You know when you've found the right location, because you can: (1) push on it and radiate pain as mapped out by the diagram, and (2) make the radiating pain and the trigger point better by hard-pressure massage right on the point itself.
On an interesting historical sidenote, Dr. Janet Travell (who wrote the seminal work, above) was the White House Physician during the Kennedy and Johnson administrations. President Kennedy awarded her that position in gratitude for her treatment of his own debilitating myofascial pain and certain other ailments that threatened to prematurely end his political career around 1955, before he was President. Dr. Travell administered trigger-point injections to Kennedy.
I also discovered a really helpful tool called the Theracane, which is a plastic cane-shaped tool with knob-like ends that allow a person to reach trigger points on their body and massage them. Because of its hooked end, a person can reach trigger points on their own back and apply leverage to massage them. It is amazing how much this type of massage/treatment provides relief, where nothing else can. I think that Theracane saved my sanity many times when the mind-numbing pain arrived at times when the painkillers were wearing or had worn off.
One interesting theory of fibromyalgia is that it involves dysfunction of the hypothalamus, a small gland in the brain that controls many functions in the body, e.g., sleeping, eating, drinking, sexual urges, response to stress, organ functioning, and emotional response. Through the nearby "master control" pituitary gland, the hypothalamus controls the other endocrine glands in the body. It also regulates the function of the autonomic nervous system, which controls the involuntary functions of the body, like blood pressure, heartrate, breathing, digestion, sweating, etc. (i.e., the "automatic" functions of the body). The autonomic nervous system is made up of two major components -- the sympathetic and parasympathetic nervous systems. The sympathetic nervous system operates the "fight-or-flight" function in response to stressful stimuli, by causing an increase in heartrate, breathing, blood pressure, rate of blood flow to muscles of the arms and legs, and sugar levels. The parasympathetic nervous system acts as the counterbalance to the sympathetic system, a "calming effect" when the stressful stimuli has ended, slowing down the heartrate and breathing rate, reducing blood pressure, and promoting digestion and elimination.
So, the gist of the hypothalamus/fibromyalgia theory is that our lives these days are filled with a thousand little stresses, instead of the occasional big stress of our ancestors (e.g., a saber-tooth tiger). Examples of little stresses include fighting traffic, stressful work environment, taking care of children, spousal interactions, threats of terrorism, etc. -- and consequently, we spend more time in the sympathetic mode than is probably good for us. In persons with fibromyalgia, for some reason the body seems to becomes "stuck" in the sympathetic / fight-or-flight mode, causing numerous problems like adrenal gland exhaustion, impaired and weaker responses to psychological and physical stresses (e.g., infection or exercise), sleep problems, digestion problems, etc. The dysfunction of the hypothalamus can then be self-perpetuating, because the body reacts to physiological stress from inside the body (e.g., pain, infections, etc.) the same as external physical or emotional stresses, causing further breakdown and damage, leading to even further stress, and so on.
The part about the hypothalamus theory of fibromyalgia that I find particularly ironic is that it is well-documented in the scientific literature, from autopsies and other studies, that mercury is known to accumulate in the hypothalamus and pituitary gland specifically. For example, the pituitary glands of a group of dentists in Sweden had mercury levels almost 800 times greater than controls. (M. Nylander et al., "Mercury Accumulation in Tissues From Dental Staff and Controls," Swedish Dental Journal, 13:235-243, 1989; M. Nylander, "Mercury in Pituitary Glands of Dentists," Lancet, 442, Feb. 26, 1986). The affinity of mercury for the hypothalamus and pituitary glands is almost never mentioned in the literature on fibromyalgia.
Other possible causes/effects of fibromyalgia include low serotonin levels, higher levels of substance P (a neurotransmitter associated with increased pain perception), abnormalities of cytokine function (a class of immune system hormones), decreased blood flow to the thalamus region of the brain (a relay center for sensory impulses), and low growth hormone. Fibromyalgia often seems to be triggered in susceptible people by an acute stress, like a physical injury such as whiplash trauma, a viral infection (e.g., Epstein-Barr virus), surgery, or emotional trauma. Remember, my fibromyalgia followed low-back surgery.
Besides the widespread muscle pain, there are a myriad of other conditions that often occur with fibromyalgia. (I've denoted symptoms I've experienced with exclamation (!) marks). These include the aforementioned chronic fatigue (!), irritable bowel syndrome (IBS), esophageal reflux (!), irritable bladder, interstitial cystitis (IC), osteoarthritis, allergies (!), headaches (!) and migraines, restless legs syndrome (RLS) (!), multiple chemical sensitivity (MCS), impaired memory and concentration ("brain fog" or "fibrofog") (!), skin sensitivities and rashes (!), dry eyes and mouth (e.g., Sjogren's syndrome) (!), anxiety (!), depression (!), ringing in the ears (!), dizziness (!), vision problems (!), Raynaud's syndrome, neurally-mediated hypotension (being dizzy when you stand up after lying down) (!), reduced sex drive (!), hypothyroidism (!), temporomandibular joint disorders (TMJ) (!), yeast overgrowth problems (!), neurological symptoms, and impaired coordination. So, you can see that these conditions really do occur in conjunction with each other, and with fibromyalgia. All of these conditions are pretty diverse and affect a variety of systems in the body. What in the world could even theoretically affect so many different parts and functions of the body? Not too many things, really, but mercury, as the most toxic substance on earth that isn't radioactive, has been scientifically linked to every one of these symptoms.
Most of the fibromyalgia literature says that fibromyalgia is not an autoimmune disease. Still, the literature notes the lopsided female-to-male ratio that is so characteristic of autoimmune diseases; notes the similarity of key symptoms between fibromyalgia and autoimmune diseases like fatigue and pain; and notes the fact that fibromyalgia, lupus, and multiple sclerosis are commonly mistaken for each other. In my experience, I believe that fibromyalgia is an autoimmune disease. Why? Because, after years of closely monitoring my fibromyalgia, I can say that the pain usually flared up when my immune system was challenged, such as when eating certain foods (food allergies) or taking pharmaceuticals (allergies). In fact, I often would have the least amount of pain when I didn't eat or take anything by mouth. It seems like whenever my immune system was tweaked, it more or less amplified the pain in my muscles, perhaps by mounting an immune attack on these areas, or perhaps through another type of immune hypersensitivity reaction. While fibromyalgia doesn't seem to be as degenerative as other types of autoimmune diseases, that may be a result of a weaker immune response, or of the resiliency of the type of tissue being attacked (muscle tissue, as opposed to, e.g., attacks on the more vulnerable nervous system in multiple sclerosis).
I know I've spent a while in this posting explaining what fibromyalgia is. In part, that's because while many people have heard of it, not many know exactly what fibromyalgia is. And, to understand why I had the symptoms I did, you need to understand a little bit about the nature of the illness. When I told a few select people that I had fibromyalgia, I was caught off-guard when they acted as if I'd been struck down by a devastating, crippling, debilitating disease. I never felt like that, because I'd had the symptoms long before the diagnosis, and I knew there had to be correlations between the symptoms. Whatever the doctors wanted to call it, I didn't care. And, probably the biggest reason why it didn't overwhelm me is because I never, ever bought into it as a mystery disease of unknown cause that was striking down all of these people in the prime of their lives. I just knew there had to be an explanation. Although, that is not to say that there weren't a lot of moments of quiet desperation. Having that level of pain, and that many simultaneous things going wrong in your body, will make anyone question everything they believe, and wonder if things will ever get better.
The cover story of the Feb. 28, 2005 issue of Time magazine was on chronic pain. Even though I was at times in excruciating pain with my low-back pain and fibromyalgia, and even though I used narcotic pain killers daily just to get by, I felt incredibly sorry for the people they profiled in that story. Why? Because most of those people had similar levels of pain, and were told to accept that there was no cure, and that they would have to live with the pain for the rest of their lives. And maybe for many of them that really is the case. I have immeasurable respect for people who have the ability to accept those levels of pain as permanent parts of their life. It's honestly hard to imagine if I could have done that or not. But luckily, I never did have to face such a horrendous reality, because just like my gut told me, there was an explanation and treatment for my problems. I noted that many of the people in the Time story had fibromyalgia and other autoimmune diseases.
Next up: A smorgasbord of other problems.