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 parathyroid.com 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 celiac.com 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.