What do you want others to know about lupus?

Lupus is a very difficult disease and does not play fair. Likely before you are diagnosed you or others will think you are going a little crazy. The pain can tend to travel which is hard to try to explain to providers because you become afraid of what they will think when you tell them. You will be so very tired at times, but you will always have to be your own b...

Why is lupus a cruel mystery to you?

Lupus for me is all consuming. I have some additional issues, but I have a rough time of it. I have fibromyalgia and between the muscle and joint pain from that and my lupus I am pretty miserable at times. I have chronic sinus infections related to sjogren’s which is another autoimmune disorder that can be secondary with lupus. I have constant fatigue, frequent low grade fevers and mouth sores. My muscles in my neck and legs ache like a tooth ache almost all the time. I can no longer work. I can not tolerate any extreme temperature change hot or cold as I have Raynaud’s syndrome also where my hands and feet turn purple and get ice cold in the winter and become very painful. The direct sun can cause a lupus flare and make me sick for days. Arthritis and muscle and joint pain makes it hard to tolerate any position for any long period of time so this cuts down the things I can do with my children. My memory and concentration are very poor and I have frequent headaches and numbness and weird feelings on the left side of my head. There really is not any area of my life that lupus has not affected.

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