Monday, June 6, 2011

a long-overdue update

Hi folks, sorry for the long delay in posting. I'll try to bring all the various threads from previous blog entries up to date in this post. I wish I had good news to report, but I don't.

In September 2010 my fatigue got to the point that I had to take an unpaid leave of absence from my job. My hopes were that a three-month rest would help me gear up for a return to work in the new year, but things only managed to get worse. In December I had to resign permanently. Since then I've been taking on occasional freelance work (I'm a programmer), earning about 1/3 my previous income on a very sporadic basis.

Cymbalta- I was on it for about 5 months. Overall I think it made my concentration worse, and despite a little initial improvement, I don't think it helped much with the pain or other symptoms. I stopped taking it.

Celiac Disease- following an ambiguous test result (positive TTg blood test, negative biopsy) I tried the gluten-free diet for 6 months. I did see some improvement in digestion, but no improvement in fatigue (except for that amazing 5 days or so in the very beginning, which I was never able to duplicate). I had a second biopsy done last month which was also negative, so my gastro is fairly certain that Celiac is not an issue for me.

The rheumatologist I saw last year, while initially promising, is now all out of ideas. He feels that I do have Chronic Fatigue Syndrome ("the real kind", he says, for whatever that's worth). He's able to observe measurable changes in my blood pressure when standing/lying down that are very typical for CFS patients. I think he uses this as a kind of screen for people who might have primary depression, vs CFS.

He adds that if I follow the most common trajectory for CFS, I should expect to feel better some time in my 50s or 60s (I'm in my 40s now).  It's very depressing to think that I'll live out the majority of my life in an essentially crippled state.

I too am out of ideas at this point. Should I finally stop looking, and just accept a diagnosis of CFS? There's no test, and no real treatment options for it. But I also don't have the energy or focus to pursue more dead ends.