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Ten Years for a Chronic Fatigue Syndrome Diagnosis

Share Your Story: What Did It Take For You To Be Diagnosed With Chronic Fatigue Syndrome?

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Updated July 26, 2011

My Early Symptoms Were

Intense fatigue after eating was the first symptom around 1996. 2003 was the year of dealing with intestinal migraines. After 8 years of just the fatigue, additional symptoms included chronic pain in shoulders, neck, elbows, hands. Constant tingling in feet and my calves often feel like ants are cra

How Long I Was Sick Before Diagnosis

From the start of the fatigue symptoms, 10 years (2006). Finally, my PCP tested for Epstein Barre virus and my level was 12 times above normal. This helps explain the sqamous cell carcinoma I was diagnosed with in 2010. EBV and HPV have a known connection to naseo-pharyngeal cancers.

How Many Doctors I Saw

10 doctors including gastroenterologists, endocrinologists, rheumatologists, general practitioners.

How Doctors Treated Me

They didn't, given their is no cure for CFS. Other than opioids for pain, which are helpful in moderation. Testosterone patches for low T helped, but were not prescribed as a CFS treatment.

How I Felt Before My Diagnosis

After breakfast and lunch I had an overpowering urge to lie down and sleep. This sleep was not restorative, nor was night sleep. Frequent nausea, light-headedness, blurred vision, unexplained shortness of breath, occasional forgetfulness for someone who had a steel trap memory beforehand.

How My Diagnosis Changed Things

I finally realized my condition was not a failure of character. I worked throughout the history of my condition, but was restricted to working at home. This left me chronically underemployed, and unable to maintain my education and standing in the field of IT. When I was diagnosed with cancer in 2010, an online search for "Unknown Primary head and neck cancers" turned up the EBV link. Smoking (which I've never done) and heavy drinking (nor more than 4-6 drinks per week) are the leading causes, but viruses such as EBV and HPV are the third cause.

Advice

  • I'm reluctant to use my condition and treatment as an sort of template for others. What works for me may not work for you, and could even worsen your symptoms. That being said it helps to read about the condition and try different approaches. Don't try more than one "thing" at a time. The synergy of interacting substances and therapies increases the difficulty of identifying what works or does not. And do not go all "natural" as a matter of ideology. The homeopathic world is full of herbal compounds of indeterminate composition and strength. Always buy products with a USP grade designation.

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