May 12, 2009

Fibromyalgia Awareness Day

*Today's guest post was written by my wonderful Mom. Thanks Mom!*

Today is Fibromyalgia Awareness Day, which was created to bring attention to this misunderstood illness that affects between 2 and 5% of the population, most of them being female.  Patients often say they feel like they have the flu, or wake up feeling like they've been run over by a Mack truck.  Sometimes an illness or accident precedes the diagnosis. 
When I was diagnosed with fibromyalgia (FM) 15 years ago, it was largely believed to be a sleep disorder.  Thus, the goal was to improve the quality of the patient's sleep through the use of antidepressants and muscle relaxants.  Today, we know more about this disorder that is characterized by widespread pain in the soft (fibrous) tissues - muscles, ligaments, and tendons - as well as severe fatigue, and sleep disturbances.  Researchers have discovered that the central nervous system of patients simply does not work properly, sending improper messages to the fibrous tissues.  For instance, a slight slip of a hammer hitting a finger can feel like the pounding of a sledge hammer to a FM patient.  Other symptoms may include Irritable Bowel Syndrome, chronic headaches, TMJ, morning stiffness, cognitive or memory impairment, muscle twitching, and irritable bladder.  Many patients are overly sensitive to noise, light, and odors.  Yet despite all these symptoms, on the outside, a person with fibromyalgia looks perfectly fine.
In June, 2007, the FDA approved the first drug specifically for the treatment of fibromyalgia.  You have probably seen ads for Lyrica on television.  A year later, Cymbalta was approved.  Both of these drugs work to minimize pain.  Additionally, three new drugs are poised for approval.  These drugs are designed to help treat nocturnal awakenings, a common problem in FM sufferers.  These drugs, however, are not without side effects:  patients are often hyper-sensitive to medications, meaning that side effects are magnified, and it's not unusual for a sufferer to be unable to tolerate a medication, even at a low dose.
A diagnosis of fibromyalgia will change one's life, but to what extent varies from person to person.  With medication, some patients are virtually unaffected, or may actually improve.  Others, though, get worse, and their lives are severely changed.  I fall into the latter category.  I have to micromanage my time, making certain that I don't have many activities scheduled in one week.  I need a tremendous amount of sleep, and am unable to get up until at least noon (usually later), which makes scheduling appointments and other outings difficult.    The pain and incredible fatigue are often debilitating.  (Imagine your worst fatigue, then double or triple it, and you may have some idea of what an FM patient lives with day after day, year after year.)  Simple activities such as weeding the garden, painting a room (one wall a day), or cleaning my house can leave me stiff and sore for days.  People often do not understand why I would choose to pursue some projects, knowing what the consequences will be.  I respond by stating that I cannot sit around and do nothing all day, that pursuing pleasurable pastimes is often the best therapy, despite the consequences.  "If you are cheerful, you feel good; if you are sad, you hurt all over."  (Proverbs 17:22, CEV)  Frustrating?  Yes.  Still, I have learned to sympathize with those who have even more serious disabilities.  And I'd like to think that being forced to slow down has been beneficial.
Want to know more?  An excellent analogy of what it's like to live with a chronic illness is the Spoon Theory.  The Fibromyalgia Network is, in my opinion, the best source for information on symptoms, treatment options, and the latest research.
"Fibromyalgia - it's REAL"

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