What now?? Lupus???

Discussion in 'Fibromyalgia Main Forum' started by marilynb, Jan 27, 2007.

  1. marilynb

    marilynb New Member

    I need help.

    The last couple of times that I have gone to my Rheumy, he said that I tested slightly positive for Lupus. He said, more than likely, I did not have it. He said a lot of people test slightly positive, but it doesn't mean you have it...

    Well, recently I have been getting the butterfly rash on my cheeks & nose. It feels hot & sometimes I feel like I have fever, but I check my temp, & don't really have any to speak of. (My normal temp is 97.6, but sometimes it registers as 97.9)

    By the way, I did not know that mouth sores were a symtom. I have had a really bad sore on my lip for over a week now. It's just not getting any better. I use medication on it daily, several times.

    I had my husband look at my face tonight & he noticed the redness too. I looked it up on google & sure enough, that's one of the symtoms. So I went back in the room to tell my hubby that this is one of the symtoms of Lupus & he just rolled his eyes & shook his head. I am now SURE that he thinks of me as a hypochondriac!! I told him, I am not a hypochondriac, it is just a symtom of Lupus & reminded him of my postive test results. Then I walked out of the room.

    What I'm I suppose to do???
    JUST SHOOT ME!!!!!

    Sorry for the rant!
  2. ask2266

    ask2266 Member

    Find out specifically what antibodies that you tested positive for for Lupus. Have you had your SSA, SSB, Anti-Smith, Anti-DNA, Anti-RNP, Rheumatoid Factor, and Anti-schlero antibodies tested? I have Lupus, but luckily I have some of the less damaging antibodies, so it is very mild. I have the occasional mouthsore and i am very sun sensitive (get a rash) and that's it. You need to find out what the rheumy tested for. It will give you peace of mind because you will have more of an idea what to expect. Let me know, and I can fill you in. Lots of people with CFS have SSA and SSB antibodies. --Ashley
  3. marilynb

    marilynb New Member

    Thanks for the input.

    My hubby realized that I was not speaking to him last night, then he started asking me questions about what the Dr had tested. So yes, I do need to get a copy of my tests.

    I don't have the redness today. Mouth sore is still bad. I'll check with my Dr. about it.

    Thanks again,
  4. NyroFan

    NyroFan New Member


    I lost my husband over disease. It was fibromyalgia, but he did not even care anymore. (I think he might have had someone of the side, anyway). I was 'damaged goods' and he said that is not the kind of woman he wanted to be married to.

    My advice: tell the group here or a professional and get the feedback you need. No, it is not easy to do one.
    And if you need treatment, why not have it done and leave it to your friends to lean on and put little pressure on hubby.

    Just some random thoughts,

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