Anybody with lupus or a similar auto immune disease?

tknola78
tknola78 Posts: 4 Member
in Motivation and Support
Hello my name is Tricia and I live in New Orleans, I was diagnosed with lupus recently after a roller coaster ride to hell and back. I any rate, all the prednisone given to me made me pack on a good 40 pounds and I want to at least try to get some off... seems like a losing battle but I need to try! I'd love to chat with some other people like me.

Replies

  • claudeCH67
    claudeCH67 Posts: 11 Member
    Hi there, sorry, but I'm in a hurry right now. But I just wanted to let you know that you're not alone. If you would like to read a real wealth of knowledge about Auto-Immun disease and diet, please check: Sarah Ballantyne ..... will get in touch later. Me too is suffering with an auto-immune disease ( not Lupus ). And diet, work outs and the "right" mental state helped me to get back on my feet. Still work in progress. But it does work! Do not give up!
  • rheddmobile
    rheddmobile Posts: 6,840 Member
    I have lupus, love to chat if you want. Getting a diagnosis took me ten years, it was hell all right!
  • khagerman1022
    khagerman1022 Posts: 2 Member
    I have PBC and AIH. Both kill energy, joints and make me sick. It's a mess. For me its mental. Fighting your own body is hard enough.
  • Momepro
    Momepro Posts: 1,509 Member
    My Dr.s have been arguing whether I have it or "just" fibro for over 20 years! Some tests yes, some no. Very frustrating. But since Fibro and Lupus are pretty much treated the same, fundamentally, I guess it doesn't matter as much. Either wsy I hurt and feel lousy. Hoping losing 100 lbs will help with some of it.
  • gidjinswife
    gidjinswife Posts: 36 Member
    I have Graves Disease, but am in remission right now. Autoimmune disease is life altering, even when in "remission" you still have to be careful not to relapse. I've been able to seek further healing from a functional medicine doctor and the AIP, but I did AIP first and was able to manage for about a year before seeking professional help (outside of my endocrinologist). I've had GD for about 5 years and it's been a roller coaster. I'd be happy to "friend" anyone who would like support from other autoimmune sufferers/survivors (depending on the day
  • HippySkoppy
    HippySkoppy Posts: 725 Member
    I have Lupus which was diagnosed 4 years ago and have had CRPS/RSD since 1997.

    For me the Lupus is particularly difficult to manage despite aggressive treatment albeit delays in diagnosis.

    I would love to talk to others living with chronic conditions and offer any support I can.

    OP - I am sorry for your diagnosis, it's a *kitten* but at last now you know what you are dealing with rather than the limbo of feeling dreadful with no answers or help in sight.

    All the best to everyone.
  • agbmom556
    agbmom556 Posts: 694 Member
    I have another immune disease. Last week I had my protein panel taken. Waiting for results. I understand about the pain and lack of energy.
  • clau3260
    clau3260 Posts: 32 Member
    gidjinswife wrote: »
    I have Graves Disease, but am in remission right now. Autoimmune disease is life altering, even when in "remission" you still have to be careful not to relapse. I've been able to seek further healing from a functional medicine doctor and the AIP, but I did AIP first and was able to manage for about a year before seeking professional help (outside of my endocrinologist). I've had GD for about 5 years and it's been a roller coaster. I'd be happy to "friend" anyone who would like support from other autoimmune sufferers/survivors (depending on the day

    I was diagnosed with graves disease this year, and to be honest, until this year I had no idea it even existed. Yes, this is definitely a roller coaster.

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