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.


  1. Did you get my email last September?

  2. Auto urine therapy is an amazing thing. I don't bother telling many people, because only desperate people will do it. I have been doing for 4-5 years after my health problems. You will see an immediate improvement. Check wikipedia for some famous urine drinkers, including the ex prime minister of India who lived to 99.

  3. I just found your blog today. I read your previous posts with interest, as a Hashimoto's patient for 11 years and mother of a child with wheat/gluten sensitivity (haven't tested for celiac, because my daughter never had enough gluten for anything to show up on blood test or biopsy).
    You haven't specified what your TSH currently is. I know previous commenters advised you to get your TSH below 2. I agree. Many thyroid patients only feel better at or below 2, despite all the doctors and lab that cling to the old 'normal range'. I hope you are familiar with Mary Shomon's books and articles?
    I'm confused by your gastro saying celiac isn't an issue for you... A positive blood test means it is. You have antibodies in your system. Just because your villi wasn't damaged in a few biopsied spots doesn't mean you aren't being damaged there or other places. Please please stay gluten free.
    I wish you well, in your health journey.

  4. possibly mild cystic fibrosis with hyponatremia