cns involvement?

Discussion in 'Fibromyalgia Main Forum' started by junebea, May 26, 2003.

  1. junebea

    junebea New Member

    Hi, my name is bea, and I have had Lupus for 10 to 15 years. I have had a flare for a year or more, and can't seem to shake it. I get terrible headaches, I used to think they were sinus, but not so, not entirely anyway. I also get itchy, and feel like someone is giving me little electric shocks all over my body. I have a horrible memory, and wonder if I am regressing. I have a wonderful Rummy, and neurologist and they take good care of me, but nobody seems to commit to this part of my disease. I see my Dr. every month, and have for the last 8 years. He always does blood work, and good checkups. I have two heart valve leaks, 50% lung function remaining, hyper-sensitive bladder, and the usual aches and pains. Does anybody out there have similar complaints. God Bless you all, Bea
  2. Princessraye

    Princessraye New Member

    bumping in case any of you can respond from your experience.
  3. sharie

    sharie New Member

    Hi Bea,

    Just wanted to let you know that I have had lupus for 16 years. I have been fortunate not to have any major organs involved but do experience headaches, itchies and of course pain.

    About 1 year ago I experienced major numbness and tingling all over my body. At the same time I always had a headache. I saw a neuro. and was put on depakote and then later topamax. Both successfully treated the headache and the pins and needles. After that was under control, the pain came. It was not the same type of pain that I would have from the lupus, but an all over muscular ache.

    Just about 2 months ago I recieved the fibromyalgia diagnosis. My rhuem. told me that up to 35%of people with lupus can develop fm. You might want to try the lupus foundation website and see if you can get any other info. I know that I thought it was cns lupus at one time but I apparantly didn't fit the bill.

    Good luck and if I can help at all let me know.
    Sharie