I’m sitting in yet another physician’s exam room. Thankfully, this time I’m fully clothed.  Although not an overly modest person, I’ve come to despise white paper gowns with worthless plastic belts. After waiting and waiting, and waiting some more, the doctor strides in—white coat immaculate, clip-board in hand, a smile pasted firmly on his face.  He gives me a polite, disinterested, “Hello, how are you?” and I begin to tell my story one more time. 

I recite a litany of aches and pains, treatments, and lack of results. This time I’m telling the story to a neurologist (I’ve already seen an internist, two orthopedic surgeons, a chiropractor, a nutritionist, psychologists, and an allergist.) After he does the usual “close your eyes and touch your nose” routine, he proclaims me neurologically sound.  No help there, I think, but in a parting remark, he mentions that my symptoms remind him of a lecture he attended last week on fibromyalgia.  With that diagnosis scribbled on his business card, I am finally on my way to recovery.

I was diagnosed with fibromyalgia in 1997 after thirty years of pain. In childhood, I was plagued by headaches and “growing pains.” After a variety of brain scans and tests, my parents were told that there was something unusual about my brain wave patterns, no surprise to them I’m sure, but there was no diagnosis.

As a pre-teen I ended up on a cocktail of aspirin, caffeine, and Phenobarbital, but even with the medication, the headaches and pain continued.  My parents had done as much as they could, and eventually I just stopped complaining.  Deep down, I knew something was wrong with me; my recurring day-dream was that a teacher would see my illness, pull me aside, and help me. It never happened. At night, I would lie in bed and simply wish that I wouldn’t wake up again.

As an adolescent, my condition worsened and I sank into a deep depression that stayed with me through young adulthood.  Suicidal ideation was a constant companion although I never tried anything serious.  Somehow, I kept putting one foot in front of the other.  I decided that my body had a will of its own to survive, and my body was winning out over my mind. Otherwise, I would have been long gone.

Migraine headaches and joint pain started in earnest in my early twenties. It seemed that relatively minor injuries just never healed.  The pain in my right shoulder that developed from weight lifting never went away even after arthroscopic surgery showed nothing was wrong.  My right knee never completely recovered from pain that developed from overextending myself on a bike ride into a head-wind.  And worst of all, the lower back pain that started from lifting a heavy box of books was debilitating for years.

Reactionary hypoglycemia (low blood sugar mimicking insulin shock) would send me into cold sweats and shakes without my knowing what hit me.  My digestion was a mess and by the age of 35, I couldn’t sleep for more than two hours at a time.  Walking and sitting were painful; depression and anxiety, pervasive.

Finally, after listening sympathetically to me for years, a friend recommended that I go the Mayo Clinic in Minneapolis, Minnesota for an exam.  In desperation, I submitted a request and described my symptoms on the registration form.  After a few weeks, I was informed by mail that my request had been forwarded to the neurology department.  A few weeks after that, I received a denial for my request for an appointment and was informed that I had been put on the two-year wait list for a general exam.

I was crushed.  Knowing that I couldn’t wait another two years for a diagnosis, the suicidal ideation was sure to turn into suicidal action, I decided to find a local neurologist on the assumption that there had been some reason my case had been sent to that department.  I picked a name from the phone book and made an appointment. 

That’s how I found a name for my affliction, but it was only the start of my search for a way to deal with it.