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Discussion Starter #1
Hi,
First time on this site,
Diagnosed with discoid lupus in Feb 1999, less than a year after we emigrated to canada from the UK.
I have suffered with headaches every day since my early 20's, i'm now 45.
And for years i have always been extremely tired, it's like hitting a brick wall & i could sleep on any floor. I nap nearly everyday 3-4 hours and not all the time i can sleep again at night.
Since being diagnosed, my body seems to be falling apart, i'm sun sensitive (rashes if i don't use high spf or cover up) can you imagine living in Canada and not being able to go in the sun, i have Arthritis in my hands (the most pain), feet, knees, hips & neck, sleeplessness, nausea, pain around my kidneys ( not been tested for anythng), deep muscle pain, mouth & nose sores, memory & concentration issues, red lace pattern on my legs and arms, fingers and palms have turned redish pink, pins & needles all over, & bruising and stomach problems.
I have been tested 4 times for SLE and all negative, i've been told that some of the symptoms could be raynaulds, or kawaski & sjogrens, but have never been tested for any of them. The DR i was seeing, told me the last time i saw him that some of my symptoms pointed to alcoholism, saying that to a person who may only go out once a month & never drinks at home, so if he was the last DR on earth i would never go back to see him ever again.
I go in April to see a Rheumatologist in Calgary, so i'm hoping she will find something, just so i know what i'm dealing with, then perhaps i can deal with everything better. Just to feel as though it's not all in my head, and for people to stop saying, ' you don't look ill ', Live a week in my body and you'll never say that again to anybody.
I feel so lost and alone sometimes, people know whats going on with me, but they will never know what it's like to live 24/7, 365 days a year with this.
Can i still have SLE with a negative test result?
I was on Predisone, taken off that, anti malarials upset my stomach, now i only take painkillers.
I hope someone can answer my question.
Many thanks
Sand.
 

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Discussion Starter #2
Forgot to mention, the DR did say there was something wrong with my ammun system, what i don't know.
Sand.
 

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sle and discoid lupus

Hello Doris, I Just Wanted You To Know You Are Not Alone. I Was Dx With Sle In 2001 .now Just Recently Dx With Discoid Lupus. The Tests For Sle Have Been Coming Up Negative But Still Having Symptoms Like You. I Can't Give You The Answer For That As I Dont Know Myself.i Too Am Just On Pain Killers. I Think Maybe Your Reummy Can Give You Some Answers.im Glad You Found Us. There Are So Many Caring Knowledgable People Here.this Is The Best Lupus Site.i Know I Havent Helped You Any Just Wanted To Let You Know That You Are Not Alone And Surley Not Lazy.most Of Us Get That All The Time.try To Come Into The Chatroom You May Get Some Answers There And Get To Talk With Real People With Real Symptoms. Glad To Have You Aboard!! Your New Friend Gsd77 :)
 

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Discussion Starter #4
Hi gsd77,
Thanks, I just want to feel some what normal again,
As it was night time in Canada, i proberly left some things out of what i was saying.
I'm also a memeber on a canadian lupus group, and they are a really helpful & cheerful bunch.
 
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