Anybody else here with an autoimmune disease?

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pileofnoodles
pileofnoodles Posts: 129 Member
in Motivation and Support
I'd love to encourage and be encouraged by those who can relate to roller coaster health and diets that come with autoimmune disorders :P Feel free to add me :smile:
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  • Rcisme829
    Rcisme829 Posts: 3
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    I have fibromyalgia. I understand struggles with energy to even cook dinner when I get off work. And to have to think about what to cook has been an issue lately.
  • pileofnoodles
    pileofnoodles Posts: 129 Member
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    I can totally relate. Especially after Christmas my diet has had me in a flare, yet I keep craving trigger foods. Two days off junk so far, and have been well enough to work out. I always take advantage of the good days. I have Ulcerative Colitis and something else still being figured out that causes black outs, migraines, muscle weakness, numbness, and joint/muscle/joint pain(more but you get it). So far all I know is that it isn't RA, lymes, or lupus :P I've been on lyrica for a month and I fear gaining weight between that and the holidays.
  • Rcisme829
    Rcisme829 Posts: 3
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    I have been more tired then usual and sore all over for a few weeks then i finally realized. ..I have been eating all of the yummy but bad for me food for a month at least! I crave sweets so bad. I'm sorry to hear of all your troubles! Not knowing what causes pain makes it worse I know. I've been on my treadmill for a week or so but it bothers my hips so bad that I can only go 20 min or so. But I'm just now getting back into it. Bleh ;) Are you on a certain "diet"?
  • pileofnoodles
    pileofnoodles Posts: 129 Member
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    I was on the paleo diet all last spring/summer/fall, but when Thanksgiving hit I said "Oh, I'll just break the diet for a week and go back" I've yet to go back xD I like to keep a journal of different foods and what their health benefits are, especially for natural pain relievers, anti-inflammatories, and appetite curbers. I swear I could eat the world if given the chance. Have you found any diets or foods that especially help you?
  • auntchellebelle
    auntchellebelle Posts: 127 Member
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    Endometriosis and Anemia
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    Type 1 diabetes and Hashimoto's
  • MariettaDelene
    MariettaDelene Posts: 82 Member
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    I have Multiple Autoimmune Syndrome (MAS) encompassing hypothyroidism, scleritis, psoriasis, psoriatic arthritis and Celiac Disease. I'd love to network! I'm definitely adding the OP but, if anyone else in this forum would also like to add me, feel free. Autoimmune diseases make it so difficult to lose weight, but we can do this!
  • jenbk2
    jenbk2 Posts: 623 Member
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    Endometriosis, Type 1 Diabetes and Hashi's. Has anyone gone AIP (AutoImmune Protocol)?
  • MariettaDelene
    MariettaDelene Posts: 82 Member
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    I did AIP Paleo last year and it did help, but I found some issues with it. This year, I'm doing an anti-inflammatory diet with the addition of FODMAP removal and it seems to be much more energizing. There's honestly only a few differences between the two (I can have walnuts on one but not on the other, I can't have coconut on one but can on the other, etc).
  • justcat206
    justcat206 Posts: 716 Member
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    Yup! I don't have a diagnosis yet but my mom and aunt both have Hashimotos and my symptoms are the same. The diets, the flareups, the lifestyle - I'm in for friends.
  • blueeyesgrace
    blueeyesgrace Posts: 407 Member
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    I have Hashimoto's, and had my thyroid removed five years ago TODAY! Best decision ever. The struggle is real, and sometimes people don't understand how difficult the struggle is. If medication is off just the tiniest bit (or if you are forgetful like me and forget to take meds the entire week of Christmas), then you can pack the weight on like crazy.

    I've lost 65 pounds since I had my thyroid removed. You can see the pictures on my profile as to the results. I have 35 to go! I feel best with a suppressed TSH level - mine rides around 0.03 and it's the magic number that seems to work best for me. Yes, I bounce off the walls with this level - but I love it! Anyone else with weight loss so far with Hashi? I'm proof that it can be done! Keep at it everyone! We can all support each other in this journey!
  • purplenails
    purplenails Posts: 34 Member
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    jenbk2 wrote: »
    Endometriosis, Type 1 Diabetes and Hashi's. Has anyone gone AIP (AutoImmune Protocol)?
    What is AIP ?
    I have hypothyroidism. Really hard to lose weight. Slow process. It took me a year to lose 25 lbs last year but I kept pushing forward.
    Suffer with bad digestion and constipation so I'm go in no to remove wheat from diet for a month to see what difference it makes.
  • Marbles93
    Marbles93 Posts: 11 Member
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    I am new here. I have Juvenile onset sero-negative Rheumatoid Arthritis. I am trying to get healthier after my liver enzymes spent the past year climbing. I thought it was the medications, but after stopping them, my liver still got worse. My Rheumy wants me to lose 20-25 pounds and see if that helps my liver function. I know that exercise will be hard, but I am hoping my new medication helps get my disease under control, allowing improved mobility.
  • pileofnoodles
    pileofnoodles Posts: 129 Member
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    Marbles93 wrote: »
    I am new here. I have Juvenile onset sero-negative Rheumatoid Arthritis. I am trying to get healthier after my liver enzymes spent the past year climbing. I thought it was the medications, but after stopping them, my liver still got worse. My Rheumy wants me to lose 20-25 pounds and see if that helps my liver function. I know that exercise will be hard, but I am hoping my new medication helps get my disease under control, allowing improved mobility.
    Not the same disorders, but I have found with mine that though it can be hard(and painful) a little bit of work out gets my symptoms to lessen in time. Have you developed a plan for starting yet? I started very, very slow last year and have slowly been adding on and changing up my workouts. It can be so discouraging on the worst days(or weeks... months) when you're body and mind just can't.

  • pileofnoodles
    pileofnoodles Posts: 129 Member
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    justcat206 wrote: »
    Yup! I don't have a diagnosis yet but my mom and aunt both have Hashimotos and my symptoms are the same. The diets, the flareups, the lifestyle - I'm in for friends.
    I know how frustrating getting diagnosed can be. I'm on year three with my unknown condition, just finally had an EEG and getting an MRI Monday. I wish you luck, so sincerely. It can be a pain getting doctors to listen and understand.

  • pileofnoodles
    pileofnoodles Posts: 129 Member
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    I don't mean to ignore anybody, It's encouraging to see I'm not alone, and feels good knowing other's on my friends list relate and are in a similar boat. Not quite the same staying in shape with autoimmune diseases, that's for sure :)
  • Marbles93
    Marbles93 Posts: 11 Member
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    pileofnoodles wrote: »
    Not the same disorders, but I have found with mine that though it can be hard(and painful) a little bit of work out gets my symptoms to lessen in time. Have you developed a plan for starting yet? I started very, very slow last year and have slowly been adding on and changing up my workouts. It can be so discouraging on the worst days(or weeks... months) when you're body and mind just can't.

    If it were just that simple. I have many affected joints and I never know when one will act up. I work full time, so it's hard to find time to work out. In the mornings I am stiff, but after work I am often too tired due to the fatigue the comes with my disease. Add four kids and their activities and it won't be easy. I am hoping my new medication helps once I start it. My daughter is on it and is now swimming two hours x5 days week.

  • blueeyesgrace
    blueeyesgrace Posts: 407 Member
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    pileofnoodles wrote: »
    justcat206 wrote: »
    Yup! I don't have a diagnosis yet but my mom and aunt both have Hashimotos and my symptoms are the same. The diets, the flareups, the lifestyle - I'm in for friends.
    I know how frustrating getting diagnosed can be. I'm on year three with my unknown condition, just finally had an EEG and getting an MRI Monday. I wish you luck, so sincerely. It can be a pain getting doctors to listen and understand.

    I was diagnosed at the age of 12 with it, however, at the time we were only told that it was hypothyroidism. Took until the age of 22 to find out that I was actually diagnosed with the autoimmune version when I was 12, but was never told about it. Not that the treatment changed, but certainly explained a lot more!
  • blueeyesgrace
    blueeyesgrace Posts: 407 Member
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    pileofnoodles wrote: »
    I don't mean to ignore anybody, It's encouraging to see I'm not alone, and feels good knowing other's on my friends list relate and are in a similar boat. Not quite the same staying in shape with autoimmune diseases, that's for sure :)

    Definitely not the same staying in shape with an autoimmune. I have adapted the motto for my life, in living with an autoimmune disease. "I define my disease. I don't let it define me". There are days where I want to give up, days where I don't have the energy to push through. I get sick so much easier than others around me. Knowing that I've come this far is enough for me to keep pushing.

    For those of you who are struggling with even getting started, or at a plateau, or have gone backwards - keep pushing! Keep the motivation that you CAN and WILL do it! Don't let others make you feel inferior because you are getting results as quick as others. All of us here have been there. We go through the yo-yo struggle constantly. Finally, rely on those who know the struggle to help push you. I'm here for anyone that needs a little push!!
  • twrobbel
    twrobbel Posts: 132 Member
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    pileofnoodles wrote: »
    I can totally relate. Especially after Christmas my diet has had me in a flare, yet I keep craving trigger foods. Two days off junk so far, and have been well enough to work out. I always take advantage of the good days. I have Ulcerative Colitis and something else still being figured out that causes black outs, migraines, muscle weakness, numbness, and joint/muscle/joint pain(more but you get it). So far all I know is that it isn't RA, lymes, or lupus :P I've been on lyrica for a month and I fear gaining weight between that and the holidays.

    I can absolutely relate! I have Hashimoto's, Chronic low Vitamin D and an unkown condition also with the same exact symptoms (minus the migraines). It gets so bad that I can't hold a phone to my ear. I also can get memory loss/confusion (I drove onto the freeway the wrong way one day, went a few hundred feet down the ramp and pulled over because somethign didnt look right but I couldt figure out what it was). A short course of steroids always help.

    They have also ruled out Lupus, MS, RA (so far- my doc says you can have symptoms for years but it won't show up on test results yet). He has another patient with similar symptoms and he had that person tested for a new disease that just was discovered a few months ago and they tested positive. He is pretty certain I would also, but there is not cure or treatment plan yet- so he said it is not worth testing me until there is a cure or treatment plan.

    I found that when I ate Plant Strong (Engine 2 Diet-Vegan and no oils), I felt tremendously better. No flare ups and I had my longest non-flare streaks both times I tried that diet. Its just hard to stick to when my favorite veggies are no longer in season. I do find that when I am stressed, it flares up. And not necessarily emotional stress- but even not getting as well rested because traveling for work.

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