i have had fibromyalgia now disease lupus!

Discussion in 'Fibromyalgia Main Forum' started by hensue, Oct 28, 2008.

  1. hensue

    hensue New Member

    i have had fibro more than 12 years fingers swelling and hurting no RA. Lots of blood test now one blood test is 3+ whatever that means? He says i have lupus, so he wants me to come in for more blood test. Taken over a week for this to come back.
    What do you think? anybody got any info. This doc is jam up 12 years ago he diagnosed me right away went to two other places even emory clinic in Atlanta just to make sure i had fibro.
    so any feedback would help
    thanks all our people our there!
    change the title see if i could get more replies! thanks grammy
  2. kjfms

    kjfms Member

    Sorry for you problems. Did you physician tell you what type of Lupus or is he waiting until he does more testing?

    Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain.

    Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials.

    These foreign materials are called antigens.

    In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues.

    The immune system then makes antibodies directed against itself.

    These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body.

    There are four types of lupus: discoid, systemic, drug-induced and neonatal lupus.

    *****Discoid (cutaneous) lupus is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body's internal organs. Therefore, the ANA test may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer."

    In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.

    *****Systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident ("remission") and other times when the disease becomes more active ("flare"). Most often when people mention "lupus," they are referring to the systemic form of the disease.

    *****Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). Drug induced lupus is more common in men who are given these drugs more often. However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.


    My sister has Discoid Lupus, which so far hasn't turned systemic. You can find a lot of information at the Lupus Foundation (this is where I got my information from) which is www dot lupus dot org

    Since there are several kinds of Lupus it is best to wait and see what you physician tells you concerning this situation but of course you know that...

    Best wishes,

    Karen :)
  3. hensue

    hensue New Member

    I was in North Carolina when they called and he wanted me to come for further blood test.
    just said your ana was like 3+. I do not have a rash my hair is not thin, I do take a blood pressure med. Avalide dont know if it is one of the meds your talking about.
    I will go tomorrow i just got back my joints in hands are swollen and hurt. So i was not going to look at website thought it my scare me. So i would go and get more blood taken tomorrow.
    Then wait for results. So can they tell by the blood test what kind you have?
    I am also going to get a second opinion if he tells me i have it.
    Thank you
    you are the only one that has replied and i really appreciate it.
    Tried to get on lupus message board and couldnt.
  4. hensue

    hensue New Member

    it is a diruretic and something else. They did a cbc panel again today it was fine.
    sent off a double stranded dna test to california and some other blood test.
    i wanted to ask you about this drug it looks to me it could cause it.
  5. kblackie55

    kblackie55 New Member

    i started out with discoid lupus then had problems with my hands to where i could only sleep with wrist splints on and was diagnosed with lupus. i was treated for lupus for years and then i went to a new rhuemy and my ana blood test came back negative and he told me i had fibromyalgia. i was told you could have lupus and develop fibromyalgia, but i don't know if it can happen the other way around. please keep me updated on how you are doing, and if you need any advice. i hope you feel better soon.

  6. hensue

    hensue New Member

    Thanks for all the replies , what is mctd? yesterday they did other bloodwork, no urine check,
    they did a anti doubles stranded DNA and other blood work and said my wbc or reg cbc is that what you call it? came back fine, the double stranded goes to California and will take a while he said.
    I am so sorry you have lupus what kind do you have?
    also how are you treated?
    if you dont mind me asking
  7. hurtnallover

    hurtnallover New Member

    Can you recommend a good book or website that explains the tests we should get? I was Dx'd with fibro 12 yrs ago but I knew there was something wrong with my immune system for years before I got Discoid Lupus confirmed with a biopsy 2 yrs ago. My rheumy orders blood tests and they come back normal, but I had neurological problems this year (pain and numbness in face), neg for MS, they say it might be lupus vasculitis. I just know I'm getting worse. My shoulders and hips are hurting a lot.

    Does anyone ever feel like the Fibro diagnosis is just a way for the doctors to avoid doing some real investigative work? I want to go to my next rheumy appt. armed to the teeth with questions but don't know what to ask. I'm afraid he'll just blow me off like he's done in the past.