Anybody else here with an autoimmune disease?

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Replies

  • suzy0317
    suzy0317 Posts: 67 Member
    Because I have have difficulty find the threads that I enjoy, I just created an Autoimmune Club group. I thought it may make it easier to find each other again. :)
  • clambert1273
    clambert1273 Posts: 840 Member
    Hashi's :)
  • uniquewrapz
    uniquewrapz Posts: 160 Member
    I have fibromylagia and IBS and glad to see this thread!!! I struggle with the energy level and work a crazy stressful job too, that doesn't help. I try to avoid dairy and inflamatory foods but when I get a flare up it's BAD. I ate like a pig for the holidays, and dreaded stepping on the scale this week. Surprisingly, I lost weight. Right now I am mid way through trying a week without meat. Gave up pork, poultry and beef. I've lost 5 pounds this week, so am going to keep on it a bit. I need to lose about 40 pounds, most of which I gained through infertility treatments and miscarriages.
  • mcibty
    mcibty Posts: 1,252 Member
    This thread is a real-life episode of House.

    Are you sure it's not Lupus?
  • uniquewrapz
    uniquewrapz Posts: 160 Member
    I was tested for lupus a few years ago, came back negative. I am thinking of retesting for that and for Crohn's. Going to hunt down this group ---thanks for starting it! I am so happy to know I am not alone. Feel free to friend me...
  • theswordpen
    theswordpen Posts: 1
    This is an awesome forum! I'd love anyone to add me who wants to. I got diagnosed a year ago with Systemic Scleroderma and RA. Diet has been affecting me for years (even before diagnosed), I'm sure it has to do with the Scleroderma being active in my gut. I'm finding it incredibly hard to lose weight, even after eating 100% healthy and exercising like crazy, I guess it must be the huge mixture of meds I'm on, but I can't help but feel depressed about it some days. I'm working so hard to get myself in a really healthy weight zone for my own sanity, but also to help my RA and my intestinal issues. <33 My heart goes out to you all.
  • uniquewrapz
    uniquewrapz Posts: 160 Member
    can someone post the link to the group? I can't seem to find it :(

    Thanks!
  • blueeyesgrace
    blueeyesgrace Posts: 407 Member
    Rcisme829 wrote: »
    What problems does this thyroid condition cause??

    It's difficult to say the problems that thyroid can cause, because there are so many of them. Each person is different. There's a list of over 300 symptoms that Hashi can cause. If medication is properly adjusted, then most symptoms should disappear and should be able to live fairly normal. I found there's a phenomenal book that I reference frequently. It's called "Living Well with Hypothyroidism" by Mary Sholomon. I've had that book for almost 18 years. While I'm sure there's some outdated information, it's still a great motivational thing to reference on the days that I find it harder to function.
  • mkisch294
    mkisch294 Posts: 1
    I am so happy to find this thread! I have MCTD. Mixed connective tissue disorder. Man one I deal with is Lupus. I also have Fibro. Its hard to have the motivation to loose weight and stay positive enough to eat well and excercise. I would love any of you to add me so we can keep each other motivated!
  • innerexp
    innerexp Posts: 32 Member
    Celiac disease here. I focus on a clean eating, Paleo-ish diet which helps.
  • elixile
    elixile Posts: 80 Member
    I haven't been diagnosed but have spent the last three years with low energy levels and propensity to flu-like episodes that have knocked me off my feet so many times this year.

    Right now (back at work) I'm absolutely exhausted, and can't seem to get past that, even with 9 hours a night sleep.

    I hope it's okay to be on this thread, I'm interested as I have an upcoming hospital appointment to look into Fibromyalgia or CFS.

    Good luck to everyone here :)
  • MarziPanda95
    MarziPanda95 Posts: 1,326 Member
    I've got a couple of autoimmune diseases, ITP and alopecia. Alopecia's much more common but it's still autoimmune as the immune system attacks hair follicles. ITP is a rare blood autoimmune disease, when the immune system attacks blood platelets and prevents clotting. Thankfully neither of these affect my metabolism or require a change in diet, but the ITP has required steroid medication and I did gain weight on it back in april when I was first diagnosed. Thankfully I'm on a lower dosage now, and we're trying rituximab instead :smile:
  • his_kid1
    his_kid1 Posts: 177 Member
    Posting so I can read later. Fibro, PCOS here, and multiple chronic pain issues (have been rear-ended twice, etc). I am just this week back eating more paleo bc the 2 times I did it before, it seemed to help my pain level a lot, and I had more energy. The problem is that the first week I always feel WORSE (which I understand is quite common) so it is just pushing through that, and doing what I know I need to, to be successful (planning and cooking ahead are CRUCIAL for me).
  • goldwingit
    goldwingit Posts: 1 Member
    Hi there! I have Psoriatic Arthritis, of coarse Psoriasis and a host of connective tissue issues due to Lupus. Been on more meds than I can list. I've gained about 50 pounds in the past 8 years due to steroids and the issues surrounding my health. I am 43 and am sick and tired of being sick and tired. I'm done! I would absolutely love to have friends on here for some healthy competition. Please add me to your friend list. Since I am a pretty new to the community boards I'm not sure how to add anyone. Been trying to reach 10,000 steps per day and would like to encourage you to do the same. Thanks!!
  • suzy0317
    suzy0317 Posts: 67 Member
    Hello all! I posted in the thread earlier but wanted to let everyone know that there is a group on MFP called Autoimmune Club. I thought it might be easier for everyone to go to for support. I know I always have difficulty finding the older threads.
  • tiptoethruthetulips
    tiptoethruthetulips Posts: 3,371 Member
    I have primary sjogren's syndrome, I find that the more wholesome I eat as well as cutting out grains (which also helps with acid reflux) the better I am. Currently not being treated, but should symptoms worsen or there is progression in other areas I will consider treatment.
  • CloudyMao
    CloudyMao Posts: 258 Member
    I got firbo, RA and anemic most of the time. I definitely relate to rollercoaster - been trying to get down for 4 years now. Would like friends!
  • BleuLotus16
    BleuLotus16 Posts: 11 Member
    I was diagnosed with JRA & Lupus as a teen. Now I have a diagnosis of fibromyalgia. Inactivity due to the extreme fatigue and pain has added on the pounds. Please feel free to add me.
  • duckykissy
    duckykissy Posts: 285 Member
    I've got Hashimotos, which has given me quite a few ups and downs over the many years (I forgot one pill over Christmas and felt like crap for a week). Although not an autoimmune disease, my husband also has a neuro-degenerative condition that affects his legs and arm muscles (causes them to atrophy) and comes with Chronic fatigue. I'd love some friends who really get it.
  • Hollywood_Porky
    Hollywood_Porky Posts: 491 Member
    Fibromyalgia. If it wasn't for raw nutritious food and exercise, I would be in a catatonic state.
  • heartonyoursleeve4david
    heartonyoursleeve4david Posts: 5
    I've got Crohn's disease. My diet is a rollarcoaster. During a flare up, I'm not supposed to have more than 5 grams of fiber a day. Say goodbye to fruits,veggies, and nuts.
  • Acacia2India
    Acacia2India Posts: 446 Member
    Hi everyone, I have Celiac disease, anemia and endometriosis. I'm also dealing with chronic pain from a head injury a few years ago which is keeping me from working.

    My Celiac is so bad that it caused infertility and repeat pregnancy loss so I just had a baby via surrogate after the doctors told me to stop trying.

    Glad to find this group.
  • suzy0317
    suzy0317 Posts: 67 Member
    Hello all - I know I'm repeating myself but feel free to join the Autoimmune Club group on MFP or add me as a friend. I've been dealing with Chron's disease for over 30 years. Always a challenge and lately very difficult to lose.
  • C_Berry
    C_Berry Posts: 1
    I was diagnosed with Hashimotos Thyroiditis in May 2014 and have been looking for more people dealing with similar symptoms and diet struggles. How can I be added to the Autoimmune club group?
  • lisaperino
    lisaperino Posts: 2 Member
    Hi All, in trying the AIP elimination diet to figure out which foods may be triggering my OA and WED. I couldn't find the group either, so I'm replying to this thread to find it again. Feel free to add me if you like.
  • evilgrin696
    evilgrin696 Posts: 1 Member
    edited January 2015
    R.A. and possibly Hashimoto's. An autoimmune paleo diet can get me almost symptom free but I certainly need the support. It is difficult to eat perfect even knowing how beneficial it is. Anyone looking for support or tips can feel free to add me.
  • sharonshealthyd
    sharonshealthyd Posts: 1 Member
    pileofnoodles wrote: »
    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:

  • rose1617
    rose1617 Posts: 469 Member
    Hashi's here, too. 10 years and goin' strong. Saw someone earlier post (on another thread) something about young people being diagnosed with thyroid earlier being unlikely, well I was diagnosed at 19. Awesome. Can someone add me to that group? I can't find it here either.
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
    rose1617 wrote: »
    Hashi's here, too. 10 years and goin' strong. Saw someone earlier post (on another thread) something about young people being diagnosed with thyroid earlier being unlikely, well I was diagnosed at 19. Awesome. Can someone add me to that group? I can't find it here either.

    A Hashimoto's group or a thyroid group? I'm on my phone, but if you PM me to remind me, I'll send you the link for the thyroid group next chance I get.

    I was diagnosed with Hashimoto's at age 18... I would be curious about the average age of diagnosis and then the average age of onset (i.e. how long does someone usually have it before finding out?).
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
    rose1617 wrote: »
    Hashi's here, too. 10 years and goin' strong. Saw someone earlier post (on another thread) something about young people being diagnosed with thyroid earlier being unlikely, well I was diagnosed at 19. Awesome. Can someone add me to that group? I can't find it here either.

    A Hashimoto's group or a thyroid group? I'm on my phone, but if you PM me to remind me, I'll send you the link for the thyroid group next chance I get.

    I was diagnosed with Hashimoto's at age 18... I would be curious about the average age of diagnosis and then the average age of onset (i.e. how long does someone usually have it before finding out?).

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