Wednesday, July 29, 2009


Yesterday morning, I was actually feeling pretty good - spunky even, if you ask John. I was back in a great mood, woke up with some energy... did good throughout the day - then when I needed a little kick of energy to help out at church... it tanked... died... caput...gone... finito! (I guess you get the point)

The day did however have some positive notes - being that I finally have a definitive diagnosis as to what has been going on for the last 5 weeks... (really for the last 16 years or so... but we'll get to that)

I officially got word that I have Chronic Fatigue Syndrome. I was diagnosed with this 16 years ago, but they really (once again) didn't know how to treat it at the time... their answer was thyroid medicine... which I've been taking now for well over a year and it certainly hasn't helped with the symptoms.

Want to know what the symptoms are? (with - CHECKs - next to the ones I have)
  • flu-like symptoms such as pain in the joints and muscles - CHECK
  • unrefreshing sleep - CHECK
  • tender lymph nodes - CHECK
  • sore throat - CHECK
  • headache - CHECK
  • post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period - CHECK
  • word-finding difficulties
  • inability to comprehend/retain what is read - CHECK occasionally
  • inability to calculate numbers - CHECK
  • impairment of speech and/or reasoning
  • visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes) - CHECK
  • psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings) - CHECK
  • chills and night sweats - CHECK
  • shortness of breath
  • dizziness and balance problems - CHECK
  • sensitivity to heat and/or cold - CHECK
  • alcohol intolerance
  • irregular heartbeat
  • irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas) - CHECK
  • low-grade fever or low body temperature - CHECK
  • numbness, tingling and/or burning sensations in the face or extremities - CHECK - I think... I have occasional pain in my toes that feels like someone jabbing a needle in them
  • dryness of the mouth and eyes (sicca syndrome) - CHECK occasionally
  • gynecological problems including PMS and endometriosis
  • chest pains
  • rashes
  • ringing in the ears (tinnitus) - CHECK occasionally
  • allergies and sensitivities to noise/sound, odors, chemicals and medications - CHECK
  • weight changes without changes in diet - CHECK
  • light-headedness - CHECK
  • mental fogginess - CHECK
  • fainting
  • muscle twitching - CHECK
  • seizures
So, as you can see - some of the pieces of this mysterious puzzle that I've been living with for years are finally snapping together into one harmonious problem.

From what my doctor says, there are viruses that cause this problem to be aggravated at different times - and apparently mine have been kicked into overdrive this summer. Oddly enough, those of you that were reading last summer... might remember that I went through a similar episode back then that was an extremely long period of being sick.

There are two main viruses that I tested positive for - only one of which I truly learned by name - Epstein-Barr virus is the one that I know I tested positive for back in 1995 - and still have active today.

Some interesting information I found online about Epstein-Barr:

Epstein-Barr virus occurs worldwide. Most people become infected with EBV sometime during their lives, and therefore gain adaptive immunity, preventing repeated sickness from re-infection through EBV antibodies. In the United States, as many as 95% of adults between 35 and 40 years of age have been infected. Infants become susceptible to EBV as soon as maternal antibody protection (present at birth) disappears. Many children become infected with EBV, and these infections usually cause no symptoms or are indistinguishable from the other mild, brief illnesses of childhood. In the United States and in other developed countries, many persons are not infected with EBV in their childhood years. When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 69% of the time.

While it is a pretty common virus that most of us carry - I'm guessing that it is like other things... where some people have a natural immunity to it and never even know it's in their system - while others are heavily effected by the virus.

It sort of reminds me of a story I've heard all of my life about when I was a toddler - apparently I picked up the hepatitis A virus and gave it to my mother. She was sick for a long time - but I never showed any signs of having the virus... so I was determined to just be a carrier. I wonder now if that has something to do with this mess that I'm in... but that would be FAR down the list of things that I'd like to ask the doctor about.

There is a viral suppressant medication that they are going to be putting me on for around 3 months - then we'll retest the viral levels in my blood. There has been some success with symptoms lessening and people feeling better after having taken the medication... so I'm hopeful that this will be the answer that I've been looking for.

I am happy that someone is finally able to put all the pieces together for me and give me some hope that this can be treated - and that I'm not just some sort of crazy hypochondriac. It does all fit together, and I can rest in the fact that I know enough about my own body that something wasn't right.

I'll be picking up the medication this evening and starting it - I'll take it in the morning and evening - so we'll see how long before it makes a true difference for me. I'll be cutting the pills into smaller pieces because I want to make sure to get maximum absorption.

You might be wondering, as I was, if this means anything for our moving forward with fertility treatments - and they have assured me that it will be perfectly fine for me to move forward with those treatments and with getting pregnant while on this medication. So hopefully in just a few more days we'll be moving forward with bigger and better things.

Before I leave this post - I just want to tell you all that if you are experiencing any number of the symptoms listed above and want to talk with me more about what has been going on and the day to day issues with all of this... please drop me an email - I'd be happy to talk to you about it and help you seek the right doctor to be able to help you figure out if you have a similar problem going on.

Please don't think that you are crazy if you are experiencing things with your body that just don't seem normal... don't take one doctor's word for it - because as you might already know with me - one doctor doesn't believe this condition exists while another is ready, willing and able to treat me right now... Know that you know your body the best, and if something doesn't feel right... don't stop until you get an answer that seems appropriate for you.