Monday, September 5, 2011

What a Crock

From this article at NPR News:

"Arthur Barsky, a psychiatrist at Brigham and Women's Hospital in Boston and a professor at Harvard Medical School, says (chronic fatigue) patients need to change how they experience symptoms — typically pain, insomnia and anxiety. When patients adopt a more positive attitude, Barsky points out, it often translates into greater confidence and more energy."

This is really insulting. Perhaps we should also stop dumping so much money into Cancer research, and instead tell patients to adopt a "more positive attitude".

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.

Tuesday, September 28, 2010


So I've been on 30mg Cymbalta for 5 days now. It's been a mixed bag. On the plus side, my muscle pain is significantly improved, and I'm feeling less despondent and generally in a better mood.

On the down side, my concentration is worse than ever, leaving me totally unable to work for the past week. I can't even seem to get through a newspaper article without re-reading the same paragraph over and over again. Reading anything is really a challenge right now.

My fatigue is also perhaps a bit worse, though strangely it "bothers" me less, while on the medication. I'm trying to hang in there until next Monday, when I'll be able to call the Rheumatologist and get the results of all the bloodwork he did.

Keeping this short as I really don't have much focus right now.

Monday, September 20, 2010

went to see a rheumatologist today

After a 2 month wait, I finally had my appointment with a highly-recommended rheumatologist today. I was pretty impressed with the initial visit. He spent a lot of time taking down my history, asking questions and generally just listening. I liked that he paused for a bit and asked "so, what do you think you have?" It's nice to see a doc that actually values his patients' opinions, and doesn't immediately write you off as a nutcase or hypochondriac because you've been researching your own symptoms online.

He ordered a ton of bloodwork, most of which I didn't understand. I do know that he's testing for Lyme Disease, Rheumatoid Arthritis, Celiac (I asked for that, to see if my TTg level has come down at all since being gluten-free), and Lupus.

He doesn't think I have hyperparathyroidism, because typically you'd see a much higher Calcium level with the severity of the symptoms that I'm having (yes, I'm aware that disputes this). I'm still waiting for the PTH/Calcium/Magnesium test to come back, so we'll see.

He noticed that I had significantly lowered blood pressure when moving from a lying position to sitting up. He's a good doc- he put the cuff on and then distracted me, all the while taking note of my BP and I was none the wiser until the end.

He also noticed something funny about the coloring of my fingernails, and my cold hands. He pegged this at a "1", on a scale of 0 to 4 with 4 being the most severe. Unfortunately I don't recall the exact meaning of this... something to do with RA I think.

He said that Lupus can sometimes cause a false-positive for Lyme, which may explain why I tested positive for Lyme a few years back, but never showed any improvement on antibiotics. As far as I know I've never been tested for Lupus; he was kind of surprised to hear that I'd never been tested.

When I asked him what he thought I had, he said that assuming all the tests come back negative, he thinks I have either Fibromyalgia or Chronic Fatigue. I was surprised, since I always felt that Fibromyalgia was kind of a bucket label that they put on patients whose problem they can't really figure out. He said that no, it's a very real, very specific thing. He did note that I didn't have any of the tender points though. He's suspicious of Chronic Fatigue because of my low white blood count.  So all of this is really just speculation as we wait for the blood results to come in, which will take about 2 weeks.

In the mean time, he wants to treat my symptoms, which typically means antidepressants. I'm not too keen on that idea, having spent years getting on and then off virtually every pill known to psychiatry. In the end he sent me home with some free samples of Cymbalta, but no pressure from him to try it. I'm still not sure if I'll take it or not.

Saturday, September 11, 2010


Well I'm beginning my 10th week gluten-free, and still not seeing much improvement, beyond some modest GI symptoms. I'm planning to stick with the diet for at least a couple more months, but I'm getting very disappointed. So I'm starting to investigate other possibilities.

Recently someone on the forums suggested that I get checked for Hyperparathyroidism. I hadn't really considered it before, especially since I had seen an endocrinologist back in April; I just assumed he had checked for it, or that whatever bloodwork he ran didn't give any indication of it. But upon reading the symptoms, I have quite a lot of them:
weakness and fatigue, depression, bone pain, muscle soreness (myalgias), feelings of nausea and vomiting, constipation, frequent urination, and cognitive impairment.
So I went back over the bloodwork I had done earlier this year, and found that my Calcium level was 10.5mg/dl. This is at the very top end of the normal range, according to the lab. This site suggests that a Calcium level that high is worth investigating. Unfortunately I don't think I have ever had my PTH level tested, or at least if it was, I was never given a copy of it.

What prompted the suggestion to investigate hyperparathyroidism is the fact that I had a low Vitamin D level, and that I initially felt better (dramatically better) for a few days on Vitamin D supplements. Fatigue, pain, dizziness, memory- all of it was way better. This improvement only lasted about 3 days, and then I went back to my status quo. One interesting thing I noticed during those good 3 days, was that when I woke up in the morning and got out of bed, my feet felt strange. It took me a few seconds to figure it out, but eventually I realized that for the first time in years my feet actually didn't hurt. It was a pain that I had grown so accustomed to that I no longer even noticed it until it was (briefly) gone!

So I'm neither a doctor nor a scientist, but I can't help wondering if perhaps the Vitamin D therapy initially helped me feel better until my Calcium levels went too high, causing my body to protect itself by tamping down on the available Vitamin D. This site says that's what the body does in the presence of excess Calcium, potentially caused by Hyperparathyroidism.

But to be somewhat skeptical, I get the impression that Hyperparathyroidism isn't terribly common. At least, there aren't a whole lot of support sites out there like there are for Celiac. This leads me to believe that it's somewhat rare, and perhaps I'm just heading down yet another rathole. Well, it can't hurt to ask for a blood test. I have a new doctor appointment coming up in a week. This guy is an internist/rheumatologist who specializes in long term chronic-fatigue type patients. I'll be sure to ask him what he thinks about it.

Tuesday, August 24, 2010

genetic test for Celiac: I'm HLA DQ8 Heterozygous

Quick update- the results of the genetic test for Celiac came in today. I'm heterozygous for HLA DQ8. She only ran the test for DQ2 and DQ8. My understanding is that this indicates a "moderate" risk for Celiac, but isn't really indicative one way or the other.

Monday, August 16, 2010

update: "Mild villous blunting"

Today marks 6 weeks post-biopsy, and 6 weeks on the gluten-free diet. On the bright side, I have seen some gradual improvement in GI symptoms- the rumbling, gas & bloating that I used to get after most meals seems almost totally gone. Additionally, I'm starting to have stretches where rather than having 3-5 bowel movements daily (my previous "normal"), I'll have only a single BM/day for several days in a row. I still have days with 3-4 BMs, but they're getting rarer.

I had a follow-up visit with the gastroenterologist this afternoon. Based on the GI improvement mentioned above, she feels that "it's likely you have (Celiac) Sprue", even though the biopsy labwork was unable to confirm it. So she wants me to stay the course on the GF-diet and check back with her in about 3 months. She also ordered the Celiac genetic test, for which I had blood drawn today.

On my way out I asked for copies of my biopsy results. You can view them here. Sitting in the parking lot reading them over I found this interesting phrase: "Mild villous blunting"! Isn't this pretty much indicative of Celiac? Does that mean she visually observed blunting during the procedure? Is that even possible? Why didn't she mention this before? Why doesn't the pathologist's report seem to agree with this?  I wish I had discovered this during the appointment rather than afterwards in the parking lot. This was pretty surprising, since she told me the biopsy had been totally normal. I'm very interested in hearing from my readers what the significance of "mild villous blunting" might be.

So in addition to the GI improvement I mentioned, I've also seen some occasional improvement in my dexterity. This will last a day or so, then revert back to feeling like I'm typing with mittens on. Perhaps related to this, my neurologist also remarked that my left-side reflexes have recently improved (they were a bit exagerated previously).

Sadly though, I've had no improvement in fatigue; in fact, it seems a lot worse than before I started the diet. I spent most of last week sitting on the couch staring at the wall. I've been totally unable to work the past week or so. My employer has so far been understanding, but I've burned through nearly all of my PTO at this point. It's a tiny company, and I doubt they can afford to keep me on for much longer in this state of non-productivity.

I'm really quite freaked out about being unable to work. So I made an appointment with a psychologist that specializes in chronic fatigue/pain issues. I didn't have a lot of success with this kind of therapy in the past, but I'm not sure what else to do. I'll report back on that in another posting.

Thanks for reading.