[BreatheInBreatheOut]

I'm just feeling really low. Partly I need to vent. Partly I'm hoping that something I say might resonate with someone else in some sort of useful way.
I'm just so tired in every way. Tired, discouraged, and no closer to finding out what is wrong.

I'm sure it's a very common story to have multiple docs tell you it's all in your head, more or less, or if it's not, that they simply don't know what to do and to move on to the next doc who will tell you the same thing.

I'm just so tired and overwhelmed I don't know what to do anymore. I've found docs I like, only for them to tell me, when I was starting to have hope that someone - SOMEONE - was finally TRYING to figure out what is going on - that they're done. They tell me to move on.

It'd be easy to dismiss me, I suppose - easy to chalk up me and my symptoms to some sort of panic, hysteria, hypochondria, or conversion disorder (read: "It's all in your head" (more or less) ). Problem is that it's not, and not everything fits even that set of labels.

My CPK has been high for months and months. My CPK-mb has been high. But my heart checks out fine. I have no PE's (though I have a history of such). My vitals go all weird sometimes for no apparent reason. Heartrate goes too high or too low for the circumstances. Climbing stairs with a heartrate of 60 or under is a little difficult. So is going to sleep when my heart is racing at over 100 bpm. I have progressive weakness and dexterity issues - difficult for a former-classical musician. What the heck is going on here???

Yes, I have a psychiatrist. Yes, I have a therapist. Ironically, they are some of the staunchest supporters of the idea that I do NOT have some sort of hysterical "illness" or conversion disorder (though to be honest, I don't discount the later entirely - but it doesn't make sense for everything).

This post comes after a day that began with my blood pressure crashing (during meditation, btw), to the point where I was not able to stay awake - the lowest it got, to my knowledge (when I was lucid enough to take it) was 88/46. I had a full day planned, but spent it in bed unable to fully wake up most of the time, or make clear decisions. Like, for example, I kept answer ing the phone even though I was in no condition to talk. Luckily, one of those calls was a friend whom I vaguely remember telling me that I sounded terrible and to call my doc.

FAt lot of good that did or does. Second primary care physician in the last year. He's supposed to be good with folks like me. But I went to see him today and he told me basically to give up on the idea that anyone will ever make sense of this, and to accept that I have a life-changing illness that will never change, and to get used to it. Change my expectations. Get over it. Implied that I was wrong to continue to have unrealistic hopes that anyone will ever find any answers to help me.

Maybe I could get to that point if things were static, but they aren't. They are worsening. Sometimes rapidly. And I'm not functional. Spending nearly the whole day unable to wake up is not exactly a confidence booster. I HAVE to continue to pursue some semblance of hope - don't I???

I'm losing dexterity in my hands (though I can still type most of the time). I've lost my livelihood. I'm demoralized, discouraged, and utterly exhausted trying to convince anyone to give me the time of day any more. It's a game of doctor hot potato (with me being the hot potato). My primary care physician is supposed to chair this little game, but abdicated today.

The ONLY person who has not given up on me is my psychiatrist, who is utterly convinced that there is something physically (not mentally) wrong with me, and is actually motivated to continue looking for answers.

But he is a psychiatrist. Just as I am suspicious of, say, a rhuematologist acting as a pyschiatrist, I am not quite trusting of a psychiatrist who is trying to become a neurologist or whatever else. But he's all I've got.

What do I do??????


If anyone's made it to the bottom of this message, thanks for 'listening'. I'm just utterly discouraged and exhausted. I don't know where else to turn.

Any comments welcome.

Thanks.