Monday, April 11, 2011

The Rocky Road to Diagnosis

“You look depressed.  I’m going to start you off with an antidepressant and refer you to a psychiatrist.”

I looked at the neurologist in utter disbelief; I was there because I was in pain.  I had been plagued by excruciating migraines almost everyday, for well over a month.  I was sitting in his office, my head feeling like it was going to explode, and he was telling me that I looked depressed!

I was 15 and this was neither the first time, nor the last time a doctor would assume I had depression.

While many know exactly when they became ill, I can only narrow it down to the summer of ‘98.  I was only 13, but I know I never felt the same after that particularly stressful summer.  I ignored my symptoms for the first year, attributing them to other causes. 

Although excessively tired at the time of my trip to the neurologist, I didn’t think much of it.  Fatigue by definition is caused by exertion, so I figured it was caused by something I was doing.  I blamed it on the fact that school started too early in the morning.  During the weekends and the summer I rationalized that I was making up for lost sleep.

I decided that the pain I was always in was from my backpack or gym class.  When I did go to a doctor about the pain, I was told it was just growing pains and it would eventually go away.

Previously, I had no trouble getting good grades in advanced courses while involved in multiple extracurricular activities.  I found myself having to give up those activities and honors courses, and still I couldn’t seem to keep up.

By the time I was 16, I would be worn out after only working a four and a half hour shift at my summer job.  This time I couldn’t blame my fatigue on getting up too early; my shift began in the evening.  If I wasn’t at work I was usually sleeping; with all the sleep I was getting, the fact that I always woke up feeling like I had just pulled an all-nighter made little sense. I was so exhausted that I couldn’t think straight. The aches and pains that I used to be able to ignore became more distracting than ever. 

I was confused and frustrated.  I was sure something wasn’t right, but none of the doctors I saw could figure anything out.  Doctor after doctor told me all my test results were fine.

A couple doctors insisted I should see a psychiatrist, but I knew I was not depressed.  I even did research to see if it was possible to have depression and not know it.  I found I was lacking key symptoms of depression—I neither felt depressed nor lacked interest.  I wanted to do everything I used to.  I even tried on a daily basis to continue as if nothing was wrong, but the energy was not there.  What was wrong with me?

Eventually, I came across the name “Chronic Fatigue Syndrome” and did some research.  It explained everything I had been going through.  Thinking I finally had an answer, I went to my doctor asking him if that could possibly be the cause of all my symptoms.  He went on a spiel about how CFS was not really an illness in and of itself and that it is usually something else. 

My doctor said he would run some tests and see if I had Lyme disease or Mononucleosis and rule out anything else.  When the tests all came back negative, he decided that I must have depression.  I argued with him and he said that I had to be open to the possibilities.  So, to prove that I was open-minded, and that he was wrong, I went to a psychiatrist, who informed me that I did not have depression. 

When I went back to my doctor, he proceeded to tell me that I should get a second opinion.  I told him that was ridiculous and that it would take forever to get another appointment; so he agreed to give me a referral to a rheumatologist in the meantime, to see if I had fibromyalgia.

It was the rheumatologist who ultimately diagnosed me with CFS and FM.  I was 17 by then. 

After such a long struggle, I finally had a diagnosis.  It had taken over three years.  I wasn’t a hypochondriac, and I wasn’t lazy.  Something was legitimately wrong with me.  I knew that there wasn’t a cure and that there probably wasn’t much that could be done for my symptoms, but nonetheless I was relieved. 

(Story to be continued in upcoming posts.)

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