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Gurkinbabies
04-29-2009, 07:23 AM
So I was at my rheumy's for the first time on Monday. I got the dreaded "yes I want to say it's Lupus but I can't be difinitive." I left his office feeling beter but also discouraged. Monday happened to be a good day, no pain, I could breathe, I felt great. He was very concerned about my puffy fingers and my purple feet, but since I didn't have a rash or any other physical symptoms he didn't want to say it was Lupus. He is strongly leaning towards it though. He doesn't want to treat me for Lupus when it could be (an off chance) something else.
I left with no meds and no scripts, just a release to send to my neurologist. Then yesterday, Tuesday, I started getting that darn pain in my gut again. I get this at least 3 times a week for the past 8 months. It gets so bad I hit the floor crying. Most of the time I just ride it out and wait for it to get better. Last night though my husband made me go to the E.R. (he is coming to trerms with my illness and just wants me to be me again). I got there and was teated like a drug seeker. A kid with a cough and a girl with a vaso vagel episode got in before me. (I have the utmost respect for E.D. staff but I swear that nurse beter feel stupid and think twice the next time someone says they hurt.) I sat there for 45 minutes crippled over in my chair in the waiting room scaring little kids from my cries of pain. They took me back finally and the nurse took my history again, the doc finally showed (it was busy). I said to him if told me I was ovulating I was leaving and good luck getting me to trust doctors again. He started poking and proding and right away knew all the other docs were wrong and so was the nurse in triage. It was way to high for my ovaries and it was to severe and to much guarding and rebound for it to be an act. (the tears and distended belly helped too).
Right away he jumps to Clots. I never even thought about it. He got me some Morphine and sent me for a CT of my abdomen. Sure enough he was right. about 4 mini clots were in my spleen. TADA!!! finally proof that I'm not crazy. but still, a script for vicodin and some blood thinners is all I got. I don't want pain pills dammit I want it to stop for good. Does anyone else find it just as frustrating when you are treated like a drug seeker and then the one thing you don't want is what you get from them? I want to root of the problem treated not the pain.

Saysusie
04-29-2009, 07:58 AM
I think that there are many of us who know how you feel about doctors. It is not uncommon for emergency room doctors to only treat the symptoms and not try to get to the root of the problem. They expect you to take their findings to your primary care doctor and have them take steps to find the root of the problem.
So, it appears that this is what you are going to have to do. In the meantime, take the blood thinners so that the clots can dissolve and not work their way to another part of your body. It is up to you weather or not you want to deal with the pain without meds, so I cannot give you any suggestions in that area.
However, you might want to contact your primary physician ASAP to advise him/her of the blood clots (which can be indicative of Lupus) so that he can take steps to find the underlying cause.
Your purple fingers and toes could be symptoms of Raynaud's Syndrome. Many of us with Lupus also suffer from this syndrome as an overlapping (co-existing) disease. Here is a website with information about Raynaud's Syndrome. If, after reading it, you feel the symptoms describe you, you might want to mention this to your doctor also.
www.medicinenet.com/raynauds_phenomenon/article.htm

I wish you the very best!
Peace and Blessings
Namaste
Saysusie