Diagnosed with Fibro and Connective Tissue Disease

Discussion in 'Fibromyalgia Main Forum' started by nanday, Sep 20, 2005.

  1. nanday

    nanday New Member

    I have been dx'd with fibro and sjogren's syndrome, possibly rhuematoid arthritis. I have been on this site before but can't remember (brain fog)if I saw anyone else here had similar diagnoses.
    I just feel I am in limbo right now. My smyptoms for the fibro are getting awful. I am finding it harder and harder to function everyday. I can't really express this to my husband because he does not have this dreaded thing.
    I love him so much and the one thing that comes between us is this. I feel lazy and at the same time I also feel I can't function.
    I know everyone has problems and probably worse than mine and I am so sorry for venting like this, especially with what has been happening down south. I feel so guilty.
    At the same time I feel I can hardly function mentally,
    emotionally and physically.
    I am 46 and on top of everything else going through menopause and hot flashes start me off with the terrible itching of fibro. Do I have any kindred spirits out there??

    Bless you all,
    nanday

    'God bless all hurting everywhere'
  2. dorrene

    dorrene New Member

    Yes, I have both of those.
    Natural medicine has helped me live a normal life.
    Please find a doctor that is into natural medicine.
    My family doctor has told me that western medicine really can not help CFS or fibro etc..
  3. NyroFan

    NyroFan New Member

    Nanday:
    You seem to be having the symptoms of this disease and I would not feel guilty about it. It does have a way of turning a person's life upside down, but it all comes down to one thing: we have to take care of it to feel the best we can no matter who understands it and who doesn't.
    I hope you settle in with your new diagnosis and not let it get you down.
    Hugs,
    NyroFan
  4. nanday

    nanday New Member

    Thanks for responding to my outcry (hence the baby icon LOL) thats what I truly feel like. Everything that I am today is totally opposite of what I was 20 years ago.
    I do want to find a natural Doctor, and even, and this is ironic, my Dentist of all people, encouraged me to go to this friend of his because I want all the old amalgam fillings out of my mouth. He won't touch them because he is afraid of throwing me into a "health crisis".
    He wants me to have this Chelation (sp) therapy. Also build me up with vitimins, etc,... I don't think I can afford it though. We have insurance but they won't cover that and we are nearing retirement and there is no way we can cover hundreds of dollars of out of pocket expences like that.
    On top of all this I am helping take care of my 85 year old dad and 75 year old mom who live an hour and a half a way and are going down fast. Only my mom can drive and barely because she has had four mini strokes. Only my brother who barely will speak to my dad and me are here. My other three sibs are out west. I am in MI.
    I need a gallon B12 shot with a super-duper magnito chaser to get me some energy somewhere quick! Even my Rhuematologist said I looked bad.
    As to my sed rates and all that I don't know. I know my biopsy of my salivary glands inside my lip was positive for sjogren's and I have had over ten years of positive ANA tests. I will ask about those test results on my next appointment schedule.
    Thanks you all.
    Praying for you all.
    Hugs.
    nanday

    'praying for all those hurting everywhere...may they find solace'
  5. kalley167

    kalley167 New Member

    I was diagnosed with Fibro/CFS in june 2004, I was then diagnosed with Sjogren's January 2005. Winter was the hardest on me and it is coming again. But I seem to still be quite mild compared to others. I have been taking Plaqunil for the SS and Trazadone & Zanflex at night. I still have some sleepless nights and everyday something hurts or is stiff. I have a positive ANA, RF, SSB & SSA.
    So you have found kindred spirits here.
  6. nanday

    nanday New Member

    I also take Plaquenil for the Sjogren's. I also take flexeril, and something for the dry mouth and dry tissues which is awful. If you have the SS please see a dentist and make sure you are using a product like Biotene rinse so you can keep your mouth as bacteria free as possible or your tongue and mouth sores will be awful. I can't tell you how many taste buds I have lost. I have things to take for the pain but they don't seem to work that well.
    I take lexapro for the depression and that has been a godsend. I guess I am not having a good day today.

    Bless you all,

    nanday

    'God bless everyone hurting everywhere'
  7. wickett

    wickett New Member

    I really like my Rhuemy, however my experience has been this....If you are starting out w/a condition, sometimes the dr does the test, but there is just not enough results to diagnois...later when your symptoms are stronger and more advanced it is easier for doctors to diagnois. I beleive I had cfs and fibro long before I was diagnosed. I am wearing that word out aren't I? Its just that I do not beleive that blood test and etc can be conclusive. I am 55 and experiencing hot flashes, are they from menopause? blood tests say low side of normal, I could burst into flames!!!! Heavy sweating!!! or is it pain meds? This is confusing to me. It was not until I came on here that I understood almost everyone had this hurt and that hurt. Being hyperactive & stressed, not sleeping well, Got me very uptight. Thanks to you all I am beginning to understand
  8. moonlightkitty

    moonlightkitty New Member

    I have fibro, cfs and also believe I should have the MCTD diagnosis... if any doctor here would actually do anything other than snarl at me. A US doctor did diagnose me with Benign Congenital Hypermobility, and one doctor here said I had a 'touch of Ehler's-Danlos'. I did (do?) have the high SED rate (thanks Cindy-Lou for that info).

    Before the CFS viral type stuff hit me, I was able to live a good life thanks to natural medicine, so definitely recommend this path. The best things for me were magnesium IVs and isometric exercises to support the joints, and take the burden off the big muscle groups (less lactic acid -> control of fibro). You can see from my profile pic I was well and happy, entirely due to natural medicine!

    The other thing is even for the people with FMS and not CFS, maybe some of this research in the works will end up being pertinent... especially to do with overreactive immune systems and autoimmune disease.

    Edit: forgot to add this great link on connective tissue disorders and natural therapies... http://www.ctds.info/index.html

    (I'm still not sure if we're allowed to link, but see others do it... so I'll leave it unless someone tells me to remove it)[This Message was Edited on 09/21/2005]