I’ve been meaning to write an actual advice article this week, but to be honest I can barely help myself right now. I’ve been sort of dragging myself along for the past week. It started with this experiment to see if my dosage of 75mg of Desipramene was adding to my fatigue. I went down 25mg and added Motillium to my regimen. Didn’t feel any difference as far as the fatigue but what I did feel was an incredible amount of joint pain– pain that hasn’t let up since.
I’m talking hand-cramping, feet-cramping, knees aching, elbows creaking, calves-cramping kind of joint pain. Or bone pain. It’s got me thinking about the fact that I randomly had calcification in my ankles as a kid and it used to give me this terrible cramp in my ankles. Wondering if maybe I’ve managed to get calcification everywhere. I don’t know–it just hurts bad. Any second I’m not massaging a hole through my feet my brain feels like it’s about to short wire from the pain.
I ended up taking a painkiller last night after using a Wahl massager I bought at Target ($30) for about an hour. Woke up with a migraine from the hangover of the painkiller, still had incredible joint pain. Slept most of the day and was faced again with the dilemma of how to treat it again. Going for a more natural approach tonight to try and spare myself the migraine tomorrow–but it’s difficult to compare which is worse. And it’s depressing to think I’ve got to compare them at all.
I had an appointment with my sleep doctor, at long last.
We went over my sleep study and I feel like I understand better now where the problem is coming from. My day-sleep test was abnormal because I fell asleep each time within four minutes–crazy quick. But I didn’t go into REM cycle during any of my naps. I just sort of conked out. My doctor was describing it as more of a “body being worn out” kind of sleep instead of an “attacked by REM stage sleep” like most narcoleptics.
And because REM sleep attacks aren’t the kind of sleep attacks I’m getting–no, nothing in the narcolepsy category of medication would work on me. I’m the hyper-somulence category, and the two medications in that category had no effect.
Which, at the end of the explanation, meant my doctor felt that this was more immune-system related. (Which, if you’re counting, is now the third doctor after two cardiologists to suggest this.) So after a week of procrastinating getting my blood taken (since between the fact that my veins are so beat up and my arms just hurt with joint and muscle pain in general) I finally stopped off at a Labcorp on Thursday and got the measly two vials they had to take (which, if I had known that was all they needed would not have been a big deal–but I was expecting rheumatology panel amounts of blood to be sucked out.)
And now we wait. We wait for my immunologist appointment next week–where–I won’t learn any answers about my blood (since we already know I’m borderline low IgG and high IgM) we won’t know anything important until after this appointment, where they’ll give me two vaccinations and then retest my titers another six weeks from now….
And to make the waiting game even more painful it looks like the round of what seemed like progressive letters from Baylor and Texas Children’s were kind of in false hope. My genetic counselor said that no, we are probably not any closer to getting the results of my genome sequencing since this is a study, and they’ll really only investigate if they see my clinical symptoms matching my genetic ones and they’ll probably need some more blood after they go through the round of testing they’re doing now.
So, for those of you keep score on this game, that’s two years of waiting basically slipping down the drain.
I’m going to need to get my genome sequenced by someone else. I should have just got some kind of financing and done this two years ago.
Anyways. Here’s me getting my head massaged again.
Doesn’t get much sexier than that.
Powered by Facebook Comments