Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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lazylegs 09/13/2016

I was diagnosed 11 years ago but I know now that I have had lupus since my teens. I have constant pain and fatigue but my doctor tells me that my lupus is not active - she is reading my blood test results. I have read somewhere that disease activity cannot be indicated by those tests. Does anyone know anything about that? I live in a remote area of Canada and we don't have a choice in Doctors - we have to take what we can get.

nanny1611 09/14/2016

Hi, lazylegs. When my doctor first suspected lupus, he kept running blood tests that always came back negative. He then told me that some people can be "sero-negative," meaning that they have lupus, but it doesn't show in blood work. That was back in 2006. Then in 2010 I got rashes on my arms that wouldn't go away. By this time I had moved and had a new doctor. She sent me to a dermatologist for skin biopsies. Again, my blood work was negative, but the skin biopsies showed lupus and dermatomyositis. So if you ever get rashes, you might want to consider having a dermatologist take some skin biopsies. That's how I got my diagnosis, despite negative blood testing. Best wishes to you.

lazylegs 09/14/2016

I have been diagnosed but they use the blood results to tell them if I am in a flare or not, It doesn't matter if I am in pain or what I feel like. If those blood test results are ok, then I should be symptom free and running marathons!

lazylegs 09/14/2016

Very frustrating

MButterfly 09/15/2016

I know you're in a "remote area" but you may have to travel. A good rheumatologist is worth their weight in gold to a lupus patient. I've had GP's run bloodwork when I was horribly ill and say, "Oh, your bloods are ok. So, there's no way you're flaring." Eventhough I couldn't get out of bed. My Rheumatologist can take a look at my bloods and give me a physical. In no time flat, this doc can tell me how I'm feeling. I don't even have to explain. Then we make the necessary adjustments in my meds. We are not our bloodtests. Lupus is cruel, and it's incredibly hard to detect flares by the numbers.

lupusstyle 10/11/2016

Minnesota has the best doctors in the USA. I would see a Rhomotolgist and blood specialist

mbond007 11/09/2016

If you haven't already seen a Rheumatologist that would be the first thing you need to do. As for your pain and fatigue you may also have Rheumatoid Arthritis. Lupus and RA almost always go hand in hand. If you have Lupus, you most likely will have the RA.

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