I am a 38 year old stay at home mom. I was recently diagnosed with Lupus. I had symptoms for many years now but I just ignored them, pushed thru the pain, or wrote it off as the beginnings of arthritis. My mom was diagnosed with Lupus in 2003. In 2009 she was diagnosed with ALS. She just passed away on 2/15/2013.
I have 2 kids, an 8 year old and a 6 year old. Last year, I started experiencing extreme bouts of fatigue. I was eventually diagnosed with severe depression. But I knew there was something more to it. For years I complained about my hands. One dr said it was over use. One dr gave me naproxen and said it could be arthritis. Last year I began to feel like I was loosing strength in my hands. I didn't have a grip anymore. I felt like I couldn't hold onto things. I couldn't open up a water bottle anymore. Finally my husband made me go to the dr about it. Because of my family history he decided to test for Lupus. The test came back positive.
I went to one Rheumatoid dr who tested me further and said I didn't have Lupus, I had sjorgrens. He started treating me for that. I still felt the fatigue and lack of strength in my hands. My right hip has had been hurting me and I was experiencing numbness. He just told me it was the weather. I wasn't sleeping well. For over a year, I could barely get more then 4 hours of sleep and usually not consecutively.
I decided to go to another dr, recommended by a friend who has lupus, who tested me again and said I had lupus. I've been on Lyrica but am needing to change it because it's just too expensive for us. Our insurance isn't very good and one month of Lyrica is almost $200.
It has been an adjustment. Somedays I feel really good and then I realize the next day that I've over done it and I'm in bed hurting.
The hardest part for me has been the lack of sleep. I can get 4 hours maybe 6 with sleeping pills. Without sleeping pills I can maybe get 2 hrs. I went for almost a year of not sleeping. I used to be able to sleep really easily. I can't fall asleep before 12 these days and it's usually a very restless sleep even with the sleeping pills.
I've been denying the whole prognosis for a while now but after my mother's death, I realize I can't do that anymore. I have 2 small kids and my biggest fear is that they develop this disease also. I don't want them to experience the kind of pain I go thru on a daily basis.
any advice would be very helpful.....