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Lupus/Autoimmune Fears...Desperate and Alone...Need help badly

Discussion in 'Support Subforum' started by Steve J., Mar 11, 2015.

  1. Steve J.

    Steve J. Well known member

    Hello all,

    It's been some time since I posted a new thread. My main symptoms are vague joint/muscle pains, first in the arms, then the legs and back, now just my legs essentially. But it always hops around.

    Anyway, recently I had blood work done and my ANA titer level is 1:40. This has been described by one physician as equivocal (ambiguous), while another has told me that we should have other things checked out. I've read in many places that this level is essentially negative, and is in no way indicative on its own of lupus or any other autoimmune disorder. But my anxiety level about it is through the roof. I feel like I'm having all-day panic attacks. It's...the most difficult thing I've ever dealt with.

    My TMS therapist is confident that I have TMS, and assured me to not worry regarding these latest results, but it is so difficult. So, so difficult.

    Does anyone have experience with something like this? Can anyone lend me some encouragement or feedback? I really need it, guys.

    Thank you,
  2. Zumbafan

    Zumbafan Well known member

    How to address the anxiety...with mindfulness. If you find Daniel Lyman's post on November 11, 2014, under 'Losing Hope', half way down his answer starting with the word STOP. He explains it so well, and if you follow his advice, you will calm down. Remember, repetition, repetition, repetition.
  3. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Steve,

    No feedback on these symptoms, but just a hello and hope for your healing.

    You have a TMS therapist. You have your knowledge of TMS. Both of these are huge. Right now you are dealing with fear, anxiety and panic. Try to witness these as symptoms as TMS, and treat them accordingly. Witness, inquire into what is underneath, and hang in there! Hopefully you will get more specific responses soon regarding ANA. Meantime, you are in mental anguish. Be gentle with yourself, and disengage as best you can from the mental stress.

    Andy B.
    mike2014 and Steve J. like this.
  4. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Can you post a link to that. I cannot find it.
  5. Dahlia

    Dahlia Well known member

    Hi Steve:
    Check this out for some encouragement: https://www.theconnection.tv/

    This is a documentary movie about the mind/body connection. The woman who made the movie herself had a full-blown autoimmune disease and she has now been declared disease-free. See what you think. If you look around youtube you will see some talks she has given about the movie, for example a talk at google:

    Good luck, Steve.
  6. Zumbafan

    Zumbafan Well known member

  7. David88

    David88 Well known member

    Hi Steve J,

    Yes, I've been through this. I'm working with a TMS therapist myself, and it can be very, very difficult.

    The fact that you're feeling such anxiety about an ambiguous test result is TMS. Remember, TMS is about distracting your attention. It's not only pain that can do that; worry does too. And what better to worry about than an ambiguous test result?!

    It's a part of the therapy process that your anxiety and your TMS symptoms often increase as you begin to become aware of your repressed feelings. After all, those feelings were repressed because they were unacceptable in some way. Now you're making the choice to approach them anyway, so that they won't continue to have power over you. Of course that's scary. It's also brave.

    Since starting therapy, I've had periods of panic just as you are describing. For me it is visceral. The anxiety comes from deep inside. It's very tough, but necessary to go through.

    Remind yourself when you're feeling awful that it's part of the process, and you'll get through it. Be kind and patient with yourself -- you deserve it, and you need to be your own best friend and caretaker right now. Look for comfort wherever you can find it.

    Steve J., Ellen and Zumbafan like this.
  8. Zumbafan

    Zumbafan Well known member

    Kindness is so important, I see a lot on this forum.
    I came across this quote...be kind, for everyone you meet is fighting a hard battle - Plato
    Steve J. likes this.
  9. Birdie

    Birdie Peer Supporter

    Hi Steve, I have muscle/joint pain, too. And my ANA titer is 1:160! Was told by the rheumatologist that it's pretty normal, no Lupus, no autoimmun disorder. ANA occur even in healthy populations and in "fibromyalgia" which is TMS!
    But I absolutely understand your panic as I went though the same thing.
    Steve J. likes this.
  10. Waterbear

    Waterbear Peer Supporter

    If memory serves my ANA is 1:150.

    I got 3K worth of blood work done before I found TMS. It all came back fine except the ANA which is was told was, "something to make you go 'hmmm?' but not a real disease."

    So I was put on a regiment of going to see a specialist, who I hated because she was a nut case who scared me, every 6 months. She talked to me a lot about what I shouldn't do at the gym.

    A few days before my first meeting with her, I discovered TMS and started to read and journal. I had the meeting, felt awful, and started to focus on TMS healing. I started to feel better, a lot better. After 4 months, I was doing so much more. As I approached my 6 month mark, the pain started to come back.

    I was afraid to go see her again. I didn't want to do blood work again. I didn't want her to tell me to take it easy again. I didn't want her to be rude to me again.

    So I did something that I would normally never do. I called and canceled the appointment on her day off. I never looked back. I decided to focus on TMS healing only and I decided that I would tell myself that I could workout.

    I got better. Slowly, I got better.

    A full year has passed and I spoke with my PCP about it. He says, if I really had something, we would know by now, and he said he won't test me this year.

    I get draw, run, jump, etc now.

    You'll be okay! Never give up!
  11. Steve J.

    Steve J. Well known member

    Wow. Thank you all for your responses.

    I followed up with my primary and she isn't even in the slightest bit concerned about the number. The fear that was instilled was all my doing....

    I am, for the first time, absolutely, unequivocally, 100% convinced that I have TMS.

    I'm ready to continue the journey.

    Birdie likes this.

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