Discussions By Condition: I cannot get a diagnosis.

Been struggling with this off and on since 1989 ... CFS? Fibromyalgia?

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Tamara999
  • February 27, 2008
  • 08:13 AM

In February 1989 I had a flu that never went away. I had flu-like symptoms, a constant (killer) headache, sore throat, stomach ache, tightness in my chest, post nasal drip and the kind of mental spaciness you get when you have a fever -- but never had a fever. I was diagnosed with Epstein Barr virus (later called Chronic Fatigue Syndrome) and was put on disability for 3 years -- though my insurance company did fight it saying I was "only" depressed. All I could do was lie in bed. It was a horrible life. I went back to work in 1992 but would only survive by coming home and going straight to bed on week nights and then sleeping entire weekends away. The disease went into submission some time in the late '90's though I never understood why.

Fast forward to 2004. The disease reared its ugly head again. Same symptoms: really bad headache -- like a band tight around my forehead, temples, and the back of my head, mental spaciness like I was getting a fever but no temperature, horribly nauseated and sore stomach (could not stand to have any clothes touching it), tight chest, aching muscles. I would cry in the elevator on the way up to work. I would go down to my car and sleep for a couple hours as my lunch break. At the end of the day I would go straight home, eat dinner and go right to bed. This time I was diagnosed as having Fibromyalgia and soon I was written out of that job on disability.

Now I am unemployed, trying to get back to work -- needing to get back to work -- and YOU GUESSED IT just a week and a half ago my mysterious illness has crept back up (at the worst possible time). I am also noticing that while I am overtaken by my flu-like symptoms, the nausea and the headache during the day (I sleep until around 4 or 5 pm), I am able to get up around 5pm and feed myself and take care of things I need to tend to in the evening. My pain seems to lessen a bit at night, however, I am extremely hot and sweaty no matter what the weather is like; no matter how cold.

I went to my doctor Monday and she wants to do a number of blood tests. We are holding out to see what my past tests have revealed and -- well, until I am employed and have insurance. Which is a catch 22 since right now I am too ill to interview (unless I could schedule some interviews at 7 or 8pm!).

Does anyone have any idea what is going on with me? Does this sound like EBV or Chronic Fatigue or Fibromyalgia because I have tried those treatment options and they never seemed to fit. Nor did I fit their symptom list enough to feel comfortable with the diagnosis.

Anything would be a great help. I am completely lost and feeling desperate. Thank you so much!


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