Possible Lupus, Please Help Me!
Hi everyone, sorry if this is the wrong area for this post. But I'm miserable and feeling quite at the end of my rope... so please read this, even though it's long.
It all started with shaky hands. At first (May-October 2009), it came and went. Then sometime around Christmas í09, it was here to stay. At first it was only a low level tremor, which was made worse with stress or anxiety. But some days it would be bad just on its own. By the time April 2010 rolled around, the shaking had increased to a daily thing. It made playing my flute very difficult- very difficult. Over the summer the tremoring increased.
I was prescribed Klonopin by my now ex-nuerologist. He told me the tremors were nothing to worry about. I was frustrated, but I took the Klonopin anyway. It was miraculous- the tremors stopped. But then all hell broke loose. I had a very, very bad reaction to the Klonopin, which reached its climax when I had a panic attack where I collapsed and vomited, and just laid on the floor for a while, unable to move. Needless to say, I wasnít on the Klonopin very long after that.
The tremors got worse and worse and worse. My flute playing suffered severely. My hands would go numb occasionally. Iíd lose feeling from about the center of my hands until my fingertips. I could never tell what fingers were moving, and I only knew what keys I was pressing down because I could feel them (under my fingertips). I pointed this out to Mr Flute Teacher, who told me to get to a doctor asap.
I continued to play through the numbness, but then another sensation occurred: pain. Shooting, sometimes severe, pain. In the beginning it was only when I played (or typed for a long period of time). It got to the point that I dreaded band practice- something Iíd loved- because I knew it was going to be two hours of suffering.
Most days, now, I am in varying degrees of pain. Sometimes it is unbearable, and it never, ever goes away. I do not remember what it is like to not be in pain. The pain in my hands feels like pins-and-needles, but burning. They are on fire. They feel like they are stuck in steel gloves that are a size too small. It is a squeezing, burning, pricking pain. And the tremor has not gone away. My hands are weak- sometimes too weak to put on my own damn makeup. Iíve had to give up flute, and change my major and change the idea of what I wanted to do for the rest of my life- teach music. Now I cannot, because of this damn mysterious illness.
My neck hurts a lot, too, and usually that is the cause of these god-awful headaches Iíve been getting. I think theyíre migraines, since Iím sensitive to light and sound, but these particular headaches donít build and build like a tension headache. They come on very suddenly. I feel a certain sensation- like a stabbing or shooting pain- in the back of my skull, and I have about fifteen minutes to take some strong pain med or I will be very, very miserable for the next three hours.
And my back- my lower back, like towards my hipbones?- it is usually very stiff and sore, and some days I canít walk for the pain. In February, my back muscles actually had a series of deep-set knots that a fellow student was kind enough to massage out, but twenty minutes later, they were back with a vengeance.
Iíve also lost about thirty pounds, and itís possible that Iíve lost more. I havenít been trying to lose weight, I donít really exercise, and when I have an appetite, I eat like Iím going to the chair. There are weeks when I canít eat a single thing, because if I even look at food I feel like Iím going to throw up. And then there are weeks when I am ravenous, and I cannot eat enough, and I usually overeat because Iíll never know when the ďNot EatingĒ week is going to come around again.
Some days I canít think straight- hell, I canít even talk straight. Sometimes in the middle of a conversation, I forget a word I want to say. It actually feels like a record skipping in my head and I try to remember the word, but I canít, and Iím still talking, saying ďUh... uhÖ uhÖĒ; Iím a riot at parties. My words also get garbled, and I tend to slur together them like a drunk person. Iíll even talk (or write) out of order: ďStore today, we are going yes?Ē I have trouble articulating- even on paper!- and sometimes I forget what Iím talking about in the middle of a sentence.
I know Iím forgetting a lot of things, like my insomnia (also diagnosed) and how some weeks are better than others, and the other weeks make me want to stay in bed with my covers over my head. Oh, and now as I speak (er, type) I have this random shooting pain in my arm. Random shooting pain, or burning paints, occur quite a lot, and anywhere in my body. I just tend to ignore them these days.
I am sick and tired of being sick and tired. My new neurologist, whom I affectionately refer to as Dr. Mad Professor, is very intrigued by my symptoms. He prescribed me Lyrica for the pain (which works mostly, but not completely). Dr. Mad Professor does believe that there is something wrong with me, so he ordered a barrage of tests.
It is not: bone spurs, nerve damage, carpal tunnel, or some sort of brain-damage thingy. It might be lupus- or multiple sclerosis. But between the two, Iíd take lupus.
If anyone recognizes these symptoms and has a hunch, please let me know!!