When the Doctors Don't Know: Diagnosing Fibromyalgia

fibromyalgia a fake?
I was a fake. I was a liar. I was putting on a show and looking for attention. As far as he was concerned, there was nothing medically wrong with me. And he had the tests to prove it!
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Fibromyalgia today remains a condition of unknown origin, although there are a variety of theories as to its root cause.  The most common symptoms are pain and weakness, and in order to be diagnosed with it a patient needs to demonstrate pain in all four quadrants of the body as well as at least eleven active trigger points out of a possible seventeen.  No diagnostic procedure such as blood work is currently available to help in the diagnosis.  Because fibromyalgia’s cause remains unknown, it is difficult to treat, with the focus remaining on the alleviation of symptoms.  For some of us, it was difficult to even be taken seriously, much less diagnosed and treated.

The Mystery Condition

I had been relatively active as a child, participating in softball, soccer, gymnastics and other physical activities.  As I entered puberty, however, I started experiencing more and more severe pain, primarily in my legs.  At the age of thirteen the pain suddenly became unbearable.  I simply refused to walk anymore and was confined to a wheelchair.

I was extremely fortunate to have as capable a general practitioner as I did.  I have no recollection of what all he checked, but his initial conclusion is something I have held dear for the last twenty years: “I believe there’s something wrong with you, but I have no idea what it is.”

It takes a lot of guts for a doctor to admit he’s not perfect, that he can’t diagnose everything and that everything is not obvious.  Because he was willing to admit the reality of my situation, we were able to move forward in trying to figure out what really was going on with me.

I was subjected to a battery of tests and examined by a slew of specialists: orthopedists, neurologists, pediatricians, and physical therapists.  Muscles, joints and nervous system all had to be considered, as there wasn’t even a consensus of what specifically was causing the pain.  I was twice subjected to an EMG (electromyogram), which involves electroshocks and long needles puncturing the muscle to measure nerve conduction.  From the way my mother tells the story, it was almost as painful for her to watch the procedure as it was for me to actually experience it.

Even the most helpful of doctors confessed they were working in the dark.  Because the pain was focused on my knees, I was diagnosed fairly early with Osgood Schlatter disease, a common condition in teens, particularly those who are tall (I eventually reached a height of 5‘9”).  It’s caused when a teen’s growth spurt puts stress on the connective tissue of the knee and results in painful inflammation. 

There were two reasons for the diagnosis.  The first was that I experienced positive results from some of the standard treatments for Osgood Schlatter, so it was a starting point if nothing else.  The second was that my health insurance wouldn’t cover my medical bills unless there was an official diagnosis.  My first orthopedist acknowledged: “This is what we’re putting on the forms, but it’s not what we really think is going on.”  Among other things, Osgood Schlatter doesn’t confine a patient to a wheelchair.  And so we proceeded to treat a disease everyone knew I didn’t actually have, because it was more useful than trying to cure a question mark.

Then there were the not-so-helpful doctors who were determined to prove me wrong rather than deal with the situation at hand.  The first was a highly respected specialist.  My other doctors were practically giddy about him being involved with my case.  He gruffly ordered me to stand, and when I didn’t, he practically yanked me to my feet.  With me holding onto him for dear life to take some of the weight off of my legs, he forced me to “walk” perhaps two feet before letting me drop back into a seat. 

I was crying uncontrollably from the pain long after he allowed me to sit.  I suspect the only thing that kept my mother from walking out with me at that moment was the necessary logistics of moving me back to my wheelchair before she could transport me anywhere.

The doctor was brutal, declaring over and over that I clearly could walk, since I had managed to cross a couple feet over the time span of a couple minutes.  I was a fake.  I was a liar.  I was putting on a show and looking for attention.  As far as he was concerned, there was nothing medically wrong with me.  And he had the tests to prove it!  Not a single diagnostic test had indicated any problems.  Thus, clearly there was no problem.  Problems that cannot be tested for are apparently not real problems.

Needless to say, he was never involved in my case again.

After two months of confinement to a wheelchair, I graduated to a walker, then crutches, then canes.  Finally, three months after I had stopped walking, I was able to once more support myself without assistance.  My troubles, however, were just beginning.  I was completely unable to run or jump, and frequently I couldn’t even be on my feet for extended periods of time.  I was permanently removed from gym class, against which my schools repeatedly argued due to the lack of a concise diagnosis.  The fact that I recently been confined to a wheelchair made little impression on them.  I wasn’t in a wheelchair now, so what was the problem?

Finally Identifying Fibromyalgia

It would take another five years before we would finally hear the word “fibromyalgia.” Apparently, my original general practitioner experienced a eureka moment at a medical conference at which someone presented on fibromyalgia.  After all of the guesswork as to what I might have, all of the stabs in the dark to try and diagnose the problem, my doctor heard about this condition and immediately thought, “This is what she has.  This is what we’ve been looking at.”

The timing was fortuitous because I was developing a new round of symptoms.  The focus on my knees had eventually subsided; in retrospect I suspect I really did have Osgood Schlatter and the fibromyalgia magnified the symptoms into crippling pain.  Now my pain was more noticeably distributed throughout my body.  I had also developed muscle spasms, particularly in my neck, back and left arm.  The back spasms gave the look of an epileptic fit.  Spasms in my arm, however, were the most common, and I was sitting through college classes in the back of the room trying not to be noticed and gritting my teeth from the aches in my exhausted arm muscles.  I feared I would be forced to drop out of school.

There are doctors who will still tell me that spasms are not a symptom of fibromyalgia.  But the new diagnosis meant new drugs to try, and the drugs worked.  For Osgood Schlatter, the primary prescription treatment is anti-inflammatory painkillers –which are generally useless for fibromyalgia pain.  Early treatments for fibromyalgia, however, utilized antidepressants.  My first prescription of amitriptyline (Elavil) was accompanied by another one of those doctor confessions of ignorance: “We don’t know why this helps people with fibromyalgia.  We just know it’s had some success.”

I was lucky.  Some fibromyalgia patients try drug after drug without relief.  For me, however, the amitriptyline immediately controlled the spasms and considerably lessened my discomfort.  Some patients also build up tolerances to their medications, but after sixteen years, the amitriptyline continues to control my symptoms. 

A relapse in my sophomore year put me back in the wheelchair for a couple weeks and condemned me to another round of physical therapy.  I was sent to a local doctor.  His first words upon seeing me were, “You know, fibromyalgia doesn’t put people in wheelchairs.”  Well, great, I thought, I’ll just walk my butt out of this office then.  Thanks for letting me know.  There was no suggestion from the doctor as to what was putting me in the wheelchair, nor any real interest in figuring such a thing out.  I never saw him again either.  I really don’t have time for that kind of nonsense.

Of course, since then it’s become obvious that fibromyalgia does put people into wheelchairs.  They are a small minority, but there are fibromyalgia patients who receive disability payments from the government because of their level of incapability.  Just because you haven’t yet seen a case as severe as mine does not mean my case is any less legitimate.

Sophomore year marked the last dramatic fibromyalgia flare-up.  Since then, it’s been a tenuous balancing act between living my life and coping with ever-changing symptoms.  Most days I appear completely fine, and that makes it difficult for some people to take my condition seriously.  We have this presumption that disabled people look disabled: they’re missing a limb, limping, using a wheelchair or other device, are accompanied by a seeing-eye dog, and so forth.  When I ask for special accommodations, such as being able to sit at an event where others stand, it’s often in an attempt to avoid symptoms, not because I’m currently suffering them.  I know the limits of my body, and I know what happens when I exceed them.

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