Lupus?

Discussion in 'Fibromyalgia Main Forum' started by gkrrt, Nov 28, 2006.

  1. gkrrt

    gkrrt New Member

    How many of you have lupus and FM? I am started to think I have it. Everytime they do that ANA test it does not show it but I am having alot of the symptoms more and more. If you do what were your symtoms and do you have to hava positive ANA test to have it?
  2. Cindyvr

    Cindyvr New Member

    The Dr says I dont have Lupus ( sister passed away from it 3 years ago) But I have a positive ANA test...
    I don't know how to explain it all.
    Cindy
  3. DorothyVivian

    DorothyVivian New Member

    Over the 20 plus years I've been treated for CFIDS & Fibromyalgia, I've had seven screening tests done regarding lupus: four were the ANA, and more recently three 'double-stranded' DNA. Of the ANA; two were slightly positive--and of the 'double-stranded; the first of those tests was positive--the last two were negative.

    Since the first ANA tests were done, and although the results were inconclusive, I've behaved as though I may have lupus.

    I believe if I truly do have lupus, it is wiser to take the measures to protect myself from potentially more damage--especially from exposure to sunlight. I live in Southern California, so from early April to the end of September, I stay out of the sun from 10 AM to 4 PM. This is rather easy for me to do since my circadian rhythm is naturally that of a night owl.

    But that's just me. Others may not feel they don't have to avoid exposure to ultra-violet rays of the sun.

    Intuitively, I believe there is a connection between CFIDS, Fibromyalgia, and Lupus..and probably quite a few other chronic conditions.

    I'll be interested to hear what others have to say about this topic.

    With love, Dorothy
    [This Message was Edited on 11/28/2006]
  4. TerryS

    TerryS Member

    I also have a positive ANA, but negative double stranded DNA.

    My rheumy told me that a LOT of people with FM go one to later show positive for lupus.

    Plus, it's my understanding that there are no 100% fool proof markers for MOST autoimmune disorders...meaning, you could have it (I guess a weak case of it) and it not show up on your blood work.

    They really thought I had lupus. I have developed a lupus-like "mask" over the past few months (as has one of my daughters). Also, I understand that red palms are another symptom, which has also occurred in the last few months; however, I also had a recent positive diagnosis of primary biliary cirrhosis (another autoimmune disorder) and that causes red palms, along with extreme fatigue (like I needed another reason to be fatigued!).

    Interestingly, seems like autoimmune disorders in general can be linked to "leaky gut". Check it out!

    Anyhow, hope this helps.

    TerryS
  5. Sandyz

    Sandyz New Member

    I have been told by 4 different doctors that I could very well have lupus. It has not showed up on tests yet. I just had a new orthopedic doctor tell me that many people with Fm get diagnosed with lupus or rhematoid arthritis later on. I`m not even scared about it anymore, I just want to know.
  6. DorothyVivian

    DorothyVivian New Member

    Yes, I was terrified when I got the first positive ANA test results--pointing to a possible diagnosis of Lupus. And then relieved when I tested negative. But then, when another rheumatologist maintained I had many of the symptoms of Lupus, and gave me the dble-stranded DNA test--which he told me was more refined, and the results came back slightly positive, I didn't know what to believe. Two rheumatologists have told me that FM and CFIDS patients often test slightly positive but do not have the other signs of Lupus.

    The problem with that reasoning is that I'm in my early 70's and have had a number of the other 'signs' of Lupus--such as the 'mask'--the darkened skin around both eyes and across my nose, in my 20's and 30's--and a period of time in my 40's my hair fell out in bunches. (I've told both rheumatologists this, but since they didn't see this for themselves, and these symptoms were not noted in my charts, so I believe they don't quite take these symptoms seriously.

    I can understand the difficulties in diagnosing these autoimmune diseases, but I wish there had been more diligence in noting these symptoms when I reported them and several rheumatologists saw them!

    Anyway, through these personal experiences, and those of acquaintances with these conditions--I've learned I have to be my own "case manager"! I've learned to advocate for myself and others with these mysterious diseases--because I doubt many doctors will.

    At the same time, I'm optimistic about progress. The advent of online research and the sharing of information has helped enormously to dispell much of the disbelief we've had to endure.

    Thanks for bringing up this subject, gkrrt--let's continue sharing our experience!

    With love, Dorothy