Missing... Well, everything

LOST: One reference/systems librarian.

No, really, I'm right here. But I feel among the missing in more ways than one, unfortunately.

The lovely doctors, one of them, prescribed an ADHD drug called Focalin to keep me awake. At three times the normal dose, it did at least allow me to leave the house for an hour or a two at a time. I still needed a nap or two a day, and it still felt as though the gravity was turned waaaay up, but I could get out... if not to do the things I wanted to do, at least to do the things I had to do.

Then, the other lovely doctors got a little paranoid. They said, "You're on three times the recommended dose." And they pushed it down to the maximum recommended dose. Which doesn't do squat.

Every hour and a half, now, I need to lie down for at least twenty minutes. Or else I hit the floor.

What this means is that I'm essentially housebound. Mr. Shoe wants to go out to dinner, he has to go alone. We need groceries? Mr. Shoe does them alone (the supermarket lights kill me on a good day anyway.) My birthday is coming and my mother has her heart set on taking me to the Olive Garden. Like I feel like falling asleep in a plate of pasta. And it kills me because I want to go. There's so frickin' much I'd love to be doing!

I also get stupid, and forgetful when I get this way. And it's sort of weird, I noticed when I get stupid and forgetful, I tend to stick things in the refrigerator that don't really belong there. Things like... shirts. Dry dog food. Packing tape. Go figure.

Two weeks ago I had another sleep study, where they discovered I get about 17-25 minutes of deep sleep (the restorative kind) a night. I meet with the sleep doctor (brilliant lady) on the 21st to see where to go from here. I know I need the CPAP turned up, and I do have some other sleep disorders that may or may not be complicating the issue.

The only weird blood test results, lately, have been Vitamin D. I flunked my Vitamin D test. I hear some doctors say that's highly unusual, and others say it's common. I think what it is is that it's common to be deficient. It's highly unusual to have your rheumatologist say, "This is pathetic." I have almost no Vitamin D in my system.

They say that could be the problem, too. My rheumy, who is a doll, says that it causes CFIDS/fibromyalgia like symptoms. What I'm reading (never give test results to a librarian) is that it's indicative of osteomalacia... Essentially the adult form of rickets. My pain is consistent with this.

The good news is that it is easily treated. The bad news is they have to find out why I'm deficient. If it's diet, I'm okay. If it's something else... Eh. Depends.

The long and the short is that I haven't, since they yanked the Focalin, been able to get to the Historical Society. I am wickedly bummed about that. I've only left the house in the past two months for doctors appointments. Pbbb. Of course, my doctor makes me come in almost every week. I do have to give that girl an A for effort.

Wow, this has really turned into a downer. Sorry. I am trying my damnedest to stay upbeat, and, for the most part, I am succeeding. But I do feel like I've really lost something...

I still haven't quite reconciled myself to the fact that I'm no longer working.


Everytime I read one of your posts, I can't help but think of the fictional doctor Gregory House from the show House, MD. He's a total bastard but a brilliant, determined diagnostician. May such a doctor fall into your life soon! Sorry to hear that things are not so swell, but it's nice for you to expend the energy to keep us posted. Anything we can help with? --rochelle

Aw, thanks Rochelle. Unfortunately, I seem to get a lot of the lazy bastards, not the determined bastards.:) I am to the point where bedside manner is a plus, but it's not the deciding factor in what makes a doctor good.

My latest favorite bastard insists if I exercise daily, I'll feel better instantly. Certainly, though it's damn near impossible, I had been trying... Six months, dutifully, I rode the recumbent bike for 15-30 minutes a day. Then I would go upstairs, and collapse.

Last time I saw him (he is an attending, and my baby-just-out-of-med-school doctor called him in for the consult) I told him I had to quit my job, and I was basically housebound. Then he asks, dead seriously, "Is this impacting your life at all?"

Suppress the urge to kick him in the groin.

I do have an absolutely brilliant sleep doctor. I have a lot of faith in her... My GP actually called her a hardass, but I do believe she knows her field well, and if the problem is there, she'll either find it, or take any doubt about what it could be in that genre out of the equation.

Thanks for listening to my little whine. Listening is probably the best thing anyone can do for this soul right now.:)

Has to be a doc with the answer...you've probably thought of every possible clinic that could help...
and then the question is how to get there especially if it's difficult to summon the energy to leave the house...

And yes, they really don't know what's wrong so finding a clinic with a doc who could have the knowledge is tough when you don't know what it is...

But maybe...the Mayo Clinic? Johns Hopkins?

Maybe chinese herbs and acupuncture...?

Maybe some medical librarians could volunteer to search everything book, journal and database they have to find docs that could help...

I just think they are throwing the wrong medicine at you...that stuff to treat ADHD seems to be doing more harm than good and could actually be the cause of scrambled thinking...

Thanks AP. It's nice to know people are out there. Okay, group hug time.

I have had the worst luck, actually, at some of the bigger hospitals in the Boston area (go figure). I have heard glowing things about Mayo and I've gotten some JH transplanted-doctors (they actually were very good). I give the JH guys preferential treatment because my husband went to undergrad there.

I had the worst luck with neurologists, and I'm going to name names, at Brigham and Women's in Boston. Holy crap, the load of bull I got from them. The rheumatology department there is better (I got a GREAT rheumy there) and their emergency room doctors are awesome. But overall, they haven't been able to connect the dots.

The focalin really did help. I know it wasn't good to be taking it. I know it wasn't. But I at least was able to get out of bed for more than 2 hours at a time. Without telling my GP, I had my neurologist I'd seen from way back rx some low dose naltrexone. He said that he had a theory that my endorphin system was causing some sort of problem. Alas, that did nothing after about a week or two, so I stopped it. The results should have been immediate.

It's just a bummer, because I really would like my life back. And no one in the medical profession (though my GP is very understanding and I feel does make me a priority) seems to recognize the gravity of the situation. This goes beyond "Wow, I could use a nap." I wouldn't go to the doctor over that. It is a fatigue so encompassing you really do think if you're lucky you'll just collapse, and if you're not...

Ah, let's have another group hug!

I can't remember if I mentioned this to you some time back, but my daughter, who has no thyroid and is constantly exhausted has had great results with Modafinil (Provigil) which is a neurological drug for narcolepsy. I'm not sure they know why the drug even works, but it doesn't seem to be addictive or have bad side effects. To my knowledge, it hasn't been used in clinical studies for her particular disease (Hashimoto's), but she thought it nothing short of a miracle.

Tried it. Unfortunately, it did nothing. They aren't quite sure why it works on some people and doesn't on others. I was taking 400 mg split over the day (the maximum recommended dose) and had no reaction. No side effects, either, but no positive increase in energy. The sleep doc just recommended I try it again, at 600 mg. She doens't think there will be an issue there. I'm willing to give it a shot. If it works, it works, that's great, if it doesn't... well, that's really no different than where I am now...

The sleep doc also did give me the go ahead to go back up on the focalin. I think she saw what a mess I was without it. (I forgot my thought mid-sentence several times.) She is still a little astounded that I was taking as much as I was and not climbing the walls, or having, er, digestive issues.

I haven't gone back up though, because my docs are all paranoid and refuse to prescribe more than is recommended by the manufacturer. So at 20 mg, I have about two good hours in the morning (scheduled to run out in about 45 minutes now).

They increased the pressure on the CPAP. Sleeping better, I guess, but still exhausted. They're leaning toward a narcolepsy/idiopathic hypersomnia dx on that end. It could still be CFIDS, they say, as IH seems to come from a post viral infection many times, much like CFIDS.

You deserve to be written up. . . in a journal somewhere. You do have an amazing story.