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.
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.
