Posted 5/17/2011 10:14 PM (GMT -7)
this is the fifth month of playing the waiting game on finding out what is wrong with me.
It started in late december, I was tired all the time and my joints would hurt, and I would barely want to move. I wasn't able to sleep well.
Then I started getting very bad stomach pain and wasn't able to pass stool. I started having bad chest pain, especially when I breathed deeply, started getting really bad heart palpitations, and they get worse after doing anything as simple as walking up and down the stairs, it feels like a heart attack. they told me i have anxiety, which i agree with because I have had multiple panic attacks since getting sick, and am currently on medication. I have headaches every single day, they range from small headaches, to migraines that make me want to vomit and lay in a dark room all day long. I'm dizzy a lot, but this can also be from the clonazepam i take but its a very small dosage. .5mg. My back hurts, my arms, legs, chest like i said before. my skin turns red, sometimes like a rash that burns, but mostly it only burns on my face. i get that butterfly shaped redness on my face as well, and sometimes it burns at the touch. when the sun hits my arms, which are already a light red in some places, it gets hot very quickly. I have low fevers every single day no matter what at some point, anywhere from 99-100.4. I sweat all the time, I'm always hot to the point where the only way I can fall asleep is with a fan blowing on me at night. I also can';t ever fall asleep so I have to take benadryl.
a month ago my GI told me that he thought I was in the early stages of Crohn;s disease after doing CT scans, bowel Xrays, colonoscopy and endoscopy. my ileum was inflammed and so was my stomach. but he referred me to a rheumatologist so I can get tested for Lupus and other things. but in the mean time he told me that i should take two 500mg capsules of Pentasa every 6 hours. I haven;t been officially diagnosed yet. I have to go do more bloodwork tomorrow as well. I still have stomach pain, and sometimes it's like i don't digest my food completely.
Could this be Lupus? or could it just be in fact Crohn's? i just have so many questions and nobody to give me answers at the moment. Sometimes i just don;t know what to do, I haven;t been living my life for the past 5 months because of the way this illness has taken its toll on me. I feel like people aren't taking it seriously, that I'm not really in pain, or I have fevers (even though I prove it to them.) I just don't feel like I'm getting any support at all.