Anyone with Mixed Connective Tissue Disease?

Discussion in 'Fibromyalgia Main Forum' started by moab341, Mar 14, 2007.

  1. moab341

    moab341 New Member

    I thought this might be a good place to find others who might be going through what I am.
    I have just been "diagnosed" although it's not official because I don't have the symptoms of it yet......so he says.
    He says my symptoms are due to my FM and the only criteria he has so far is an ANA test of 1.160 and a RNP of 1.7

    All I take is Lyrica right now which helps, but I still have a lot of muscle fatigue and I am so tired all the time.
    Symptoms come and go on any given day, but pain is always there.

    Anyway, if anyone is going through this and can help me know what to expect or just wants to vent......Please; I'm here! RM
  2. tandy

    tandy New Member

    this back up top for you~

    I'm not familiar with MCT diseases.
    Maybe someone here is??
  3. desertlass

    desertlass New Member

    I have Ehlers Danlos-- a connective tissue problem. Things are too lax due to not enough collagen production. Most people with ED also have FM.

    I haven't heard of MCDT and I've never been tested for lupus. Is there an abnormality on a normal bloodwork panel that warrants further testing, or is this the kind of test that is very specific?

    I just got a bunch of bloodwork back and am still looking through the results for myself.

    I'm sorry you have to go through this. I hope someone answers!!

    Lisette
  4. ginnytex

    ginnytex New Member

    I have been diagnosed about 3 years ago. I take Plaquenil for it and also relafen, along with occasional pain meds. This is diagnosed with an elevated ana reading. All I can tell you about the symptoms is they are all rolled into the arthitis, lupus, fm, catagory. I guess I can't really tell when I am having which one. I do know that when I was first diagnosed, I spent about 4 days a week in bed in a lot of pain and fatigue. I am so much better now. I function very well every day. I still have a lot of stiffness mostly in my feet, hands, neck and shoulder, sometimes in my hips and knees. But most days I do pretty good. I don't take many pain meds these days, maybe one a week on any given bad day, but mostly just muddle through. I do know I feel better when I can move around, I walk about 45 minutes ( resting every 10) every day, it hurts during and afterwards but not nearly as bad as when I don't walk. So I walk! Hope this helps, and hope you have a good rheumy to help you through. God bless
  5. moab341

    moab341 New Member

    Yes there is a specific blood test along with the ANA called RNP which is specific to those with MCTD.

    Ginny, it makes me so hopeful to hear that you got better after feeling so bad.
    I cannot explain how awful I feel now and I am working full time. I am in constant pain, my legs burn and feel so swollen. I am so tired I think I could stay in bed around the clock...no kidding.

    I am really starting to get depressed from feeling horrible all the time.
    All I am on is Lyrica. Two 50mg tablets every eight hours.

    I am so afraid I will spend the rest of my life like this or worse, and I don't think I could stand it. There is no quality to a life where you are constantly in so much pain there is no joy.
    I just started working with a Rheumy who is suppose to be the best thing since sliced bread, but I can tell you he has a real ego problem and is not easy to talk to at all.

    I don't even know what to ask him for to help me.
    I'm just feeling so desparate that all I want to do is cry constantly.
    Your post gave me hope....I feel I've had this for a couple of years and it's just gotten really bad in the last 8 months.
    It's hard to know if it's FM or the MCTD.

    I don't want to live like this....there has to be help.I hate to call my Rheumy again after I just saw him but I have got to do something.

    I am so glad you are better, and that you have a good quality of life now....I wish only good things for you..all of you.



  6. moab341

    moab341 New Member

    I had an absolute awful day and hurt all over.
    After work it was alI could do to walk out to my car and drive home.
    I've been so focused on these darn blood tests that the Rheumy did, I think I've put myself into a flare.

    It's all so complicated! After talking to his nurse today I don't know what to think.
    She told me about the C3 and C4 tests, and that mine were very normal which means no disease activity. That's good right?

    Why do I FEEL so bad then????

    She also said the blood tests can go from positive to negative...I asked, "even the RNP" and she said " oh yes, I've seen it many times." (for you people out there that understand these complicated blood tests)

    So......obviously the people on here know what they are talking about when they say getting a diagnosis for an autoimmune disease is no easy feat.
    Of course I don't want to have it, I'd be thrilled if I don't but I still have the FM to contend with and obviously that's what's rearing it's ugly head right now.

    I'm going up on my Lyrica dosage to see if that helps with the symptoms. Could that be what's making me so tired I wonder?

    So many questions, and trying to find the answeres is wearing me out....Sorry, I just needed to vent. Roni





  7. jake123

    jake123 New Member

    I have RSD, reflex sympathetic dystrophy. My legs have been wobbly for about a month. I can't be sure my left leg is going to follow my right leg or do something entirely different.

    When I get a crushing migraine, all my joints and muscles hurt. I have to just lie in bed and try to fall into a coma state. I detest going to the ER. My neurologist has given me some med like the one they give people in the insane asylum where they just sit in a chair and drool! It helps!