Friday, December 12, 2008

The terrible, horrible, no good, very bad day

There is a children’s book called Alexander and the Terrible, Horrible, No Good, Very Bad Day by Maurice Sendak. In the story, as Alexander's day progresses, he faces a barrage of difficulties worthy of a country song: waking with gum in his hair, sitting in the middle seat of the car and getting smushed, a lunch sack with no dessert, a cavity at the dentist's office, sneakers with no stripe, witnessing kissing on television, and being forced to sleep in the much hated train pajamas. He resolves several times to move to Australia.

Lately, I have been calling the days that are full of pain from fibromyalgia “Alexander Days.” I am having an Alexander Day when the pain is so bad that I cannot do much more than curl up on the sofa and watch old movies. If I say to my husband that I am having an Alexander Day or that I want to move to Australia, nothing else need be said – he understands that I have had a terrible, horrible, no good, very bad day.

What is fibromyalgia?

Chances are you have heard of fibromyalgia, if only through advertising on television for a drug (with significant dangerous side effects) recently approved to treat it. This painful and debilitating form of arthritis has been receiving more attention in the press lately. Although it is a common condition, with over 10 million sufferers, the disease continues to remain shrouded in mystery and confusion. Part of the reason is that due to the symptoms overlapping with other health problems, it can take years before the average fibromyalgia patient receives an accurate diagnosis. Another part of the reason is that, until recently, many doctors didn’t believe fibromyalgia existed anywhere but in the patient’s imagination. Often, patients were all too often misdiagnosed as having sub-clinical hypothyroidism, lupus, multiple sclerosis, or, worse, being a hypochondriac. About a decade ago, the American College of Rheumatology recognized the disease and issued a set formula of tests for diagnosis.

It's always difficult to explain fibromyalgia without getting overly complicated, but I will try. To help you understand how fibromyalgia feels, think back to the worst case of the flu you ever had. Remember that tired and ‘down to the bone’ achiness? Now multiply it times ten. Besides the awful widespread body pain, there are other symptoms that can very from person to person like extreme fatigue, depression, irritable bowel syndrome, cystitis, insomnia, numbness in the extremities, skin rashes, migraine headaches, hypoglycemia, and pronounced weight gain. Although fibromyalgia is not life-threatening, the disorder can be extremely debilitating. The associated chronic fatigue and cognitive problems often referred to as a “brain fog” or “fibro fog” keeps the sufferer homebound more often than not.

Most fibromyalgia sufferers have had one or more experiences that were life threatening such has a horrific vehicular accident, inner city violence, war, or, as in nearly half of cases, are survivors of emotional or physical child abuse and neglect. Traumatic experiences change the chemical structure of the brain, sometimes permanently. Brain scans of fibromyalgia patients have, in fact, shown abnormalities within the hippocampus, the part of the brain which controls emotion and pain. Early childhood abuse permanently changes the hippocampus. While the child’s biological system may expect inputs such as comfort and security, the reality of extreme stress and rejection causes an internal conflict that requires the nervous system to adapt its operating structure. This in turn causes the brain to release chemicals, such as substance P, that induce pain and, hence, the later onset of fibromyalgia and its ensuing depression. Research has detected up to three times the normal level of substance P, a neurotransmitter, in the cerebrospinal fluid of fibromyalgia patients. Substance P is associated with increased pain perception. So, a small pinch to a normal person is very painful to someone with fibromyalgia. The experience of abuse during early childhood literally changes the organizing framework for the growing child’s brain, and therefore causes a never ending negative influence on emotional and physical well-being throughout life.

Fibromyalgia sufferers have low levels of serotonin, another neurotransmitter, produced by the brain, causing difficulty in getting enough sleep – the time when muscles rest and recharge. Changes in serotonin levels can alter mood: increases have a calming effect, relieving depression, insomnia, and irritability; while decreases are associated with wakefulness and greater sensitivity to pain. There is also a link between low serotonin and depression; therefore many fibromyalgia sufferers struggle with depression. Serotonin also does double duty in the cardiovascular and gastrointestinal systems. It helps regulate the expansion and contraction of blood vessels, affecting blood pressure, and the function of platelets, the blood cells that cause blood to coagulate and close a wound. It also causes smooth muscles to contract, such as the abdominal muscles that aid digestion by pushing food through the GI tract. Bone growth is controlled in the gut through serotonin, according to a new discovery from researchers at Columbia University Medical Center, with the resulting low serotonin levels playing into osteoporosis.

SSRI antidepressants (Selective Serotonin Reuptake Inhibitors), such as Cymbalta or Zoloft, do increase serotonin levels, but they also greatly increase the risk of suicide. For this reason, they are not generally used for fibromyalgia because several studies have found the rate of suicide was already nine times greater for those suffering from fibromyalgia than in the general population.

One of the most frustrating things about fibromyalgia pain is that the medications used to treat other types of pain often have little effect on it. In a study comparing people with fibromyalgia to people without it, researchers at the University of Michigan Health System found that those with the condition had reduced binding ability of a type of receptor in the brain that is the target of opioid-type pain medications. The reduced availability of the receptor was associated with greater pain among people with fibromyalgia, according to the study published in the Journal of Neuroscience. This study, and others like it, brings hope that one day a cure, or at least a way to control the pain, will be found.

Understanding a person with fibromyalgia:

The other day, during a casual conversation, a friend told me how she explains my fibromyalgia to someone else:

“You know, when you work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even get up? Well that's how Melinda feels. Only it doesn’t go away.”

In reading articles written by others with "invisible" conditions about their desire to be understood, I found the answer as to why it means so much to be understood. (Invisible conditions are those that are unnoticeable when looking at the person.) If we were understood, they explained, we would not have such a difficult time being excused from certain activities. Friends and family would understand why we were saying "no," and not push us. They would accommodate us, or give us a break when we need it. In addition, being understood is important because it can restore self esteem when we are not able to finish (or even start) the projects we take on. Being understood means we are not thought of as "lazy," a "hypochondriac," or a "whiner." It means we do not have to explain in detail to produce an accurate picture or evoke an appropriate response. Constantly having to explain gets very tiresome. But most of all, to be understood is to be validated.

On the other hand, there are those with “invisible” illnesses who prefer secrecy. They would rather appear to be like everyone else. They have weighed the cost of added physical discomfort against the biases they imagine people may have against them, their abilities, their attractiveness, and even their value as a person, and decided to "bite the bullet." For them, understanding appears threatening, unless reserved for their most intimate circle.

Receiving understanding can be a two-edged sword. Some people, once they hear our explanation as to why we cannot participate in an activity, stop sending invitations. Therefore, we fibromyalgia sufferers prefer to offer limited explanations to a few trusted persons rather than tell everyone. After all, we don’t want pity, but instead prefer to be invited to take part in the activities of life (even if we mostly have to say no, or leave early). The spirit is often willing, it is just that the body isn’t. On the few days when we do feel better or have the gumption to push, we want to join in!

In the meantime, I cope by using warm showers, muscle rub cream, vitamin D and magnesium (seems to help some), and being grateful that I no longer have to work out in the world. Sometimes, after receiving an email about my having an Alexander Day, my husband will come home with supper in one hand, a bouquet of flowers in the other, and the offer of a very gentle hug. Right now, that is the best medicine for my terrible, horrible, no good, very bad days.