Anybody else here with an autoimmune disease?

13

Replies

  • racergirl1991
    racergirl1991 Posts: 422 Member
    I to have ITP along with cronic Anemia. I'm on no medications but have my blood checked regularly. The extreme fatigue is what gets me.
  • MarziPanda95
    MarziPanda95 Posts: 1,326 Member
    racergirl1991 wrote: »
    I to have ITP along with cronic Anemia. I'm on no medications but have my blood checked regularly. The extreme fatigue is what gets me.

    Woo, ITP buddies! I'm on a lot of medications for mine though :\ I might have to get my spleen removed in the summer if the rituximab doesn't work.
  • Zombierawr
    Zombierawr Posts: 95 Member
    Thank you for posting this!! I just went on a search as I've accepted that I'm not in remission any more, and wanted to see if anyone had changed their diets. My doctor has never recommended changes in my diet, nor does he consider it to be a trigger, but I'm super curious to see if there is anything I can do to help keep it down.

    I have Wegener's Granulomatosis (I can't type out it's new name), and I start Ritiuxan again on Thursday. I briefly got back on steroids, but I am praying I don't have to make that a permanent addition.

    I was able to get into great shape while I was fighting the disease about 2 and a half years ago, but ended up getting walking pneumonia and just focusing on remission and pushing through life. Now I'm trying to actually get back in shape, despite the new flare ups. :neutral_face:
  • QueenMother14
    QueenMother14 Posts: 438 Member
    I have Lupus. Feel free to add me.
  • k_stump_13
    k_stump_13 Posts: 21 Member
    I was diagnosed with TTP (Thrombotic Thrombocytopenic Purpura) in April of 2013. Leading up to that, I had lost about 25 lbs, but when I got sick, I was started on a heavy dose of steroids as well as periodic chemo treatments. I was on the steroids for 7 months and during that time, I ending up gaining around 60 lbs!! I'm finally getting on the right track to a healthy lifestyle. Even though I'm only a few weeks in and have only lost 10lbs, I can already tell a huge difference. I have been trying to eat healthier, smaller meals throughout the day and I go to the gym 6 days a week. I can't wait to see my final results, even though that way down the road :)
  • ksimmons19
    ksimmons19 Posts: 223 Member
    Hey guys, I have multiple sclerosis! Gained quite a bit of weight this last year (40-45 lbs) due to emotional eating. I'm interested in paleo but if I do it it will likely be modified version or just very slow transition. Looking for lasting results and more health benefits than being skinny again! Feel free to add me.
  • sad_kitty
    sad_kitty Posts: 84 Member
    I have had endometriosis for about 15 years, and chronic pelvic pain syndrome for about 10. I've been on disabilty for about 10 years now. Just found out my endo is probably stage IV, so I have no idea what the future will hold. I find it difficult to keep on top of staying physically active because of pain, but I'm hoping to change that now that my meds have been upped again. If anyone wants to add me, feel free!
  • delex329
    delex329 Posts: 9 Member
    goldwingit wrote: »
    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!!

  • delex329
    delex329 Posts: 9 Member
    I also have psoriatic artritis,still working full time. I have to loses the weight. I have stopped taking all the medication and trying to diet and exercise
  • vickierivero1
    vickierivero1 Posts: 46 Member
    Polymyositis. I ache in places I never knew existed and some days cannot lift my head. :(
  • azulvioleta6
    azulvioleta6 Posts: 4,195 Member
    I have Hashimoto's and a fairly mild case of Fibro.

    Thanks for posting this--I need to learn more about the autoimmune aspects of these diseases. I have other serious health conditions that tend to suck up all of my time and attention.

  • zanthee66
    zanthee66 Posts: 41 Member
    blueeyesgrace wrote: »
    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!

  • zanthee66
    zanthee66 Posts: 41 Member
    Hi blueeyesgrace trying to add you
  • Ahollis1072
    Ahollis1072 Posts: 2
    Type 1 diabetic since 1981.
  • Tiamo719
    Tiamo719 Posts: 256 Member
    I was diagnosed with Scleroderma in 2014, however I was never told what kind. My rheumy just said "come back when you have more symptoms". I am having lung and gi problems, many many gi problems. I am seeing a Pulmonologist and a Gastroenterologist.

    It's frustrating. I am on my 3rd GI and my second Pulmonary specialist. I don't know if I should even bother going to a different Rheum Dr since she is aware of my lung and gi problems. :|
  • IamUndrCnstruction
    IamUndrCnstruction Posts: 691 Member
    What a great thread! Well, great that we are not alone, not great that we even have to HAVE this thread, but you know what I mean. I have a disease called Lymphangioleomyomatosis (LAMs) ...it is an autoimmune disease that effects primarily the lungs, only in women. It has turned my lungs into basically swiss cheese, and caused a secondary condition called pulmonary arterial hypertension. Neither are curable and both can be fatal. I am in the process of being listed for a double lung transplant. To say I do not have a lot of energy would be an understatement. Pulmonary rehab helps though, and I have lost about 20 pounds. I have hit a big stall this last year though, after being in and out of the hospital 7 or 8 times and being diagnosed with congestive heart failure. Lately, over the last month I have started to feel a little better and am back to walking on my treadmill for 45 minutes 3 times a week and Pulmonary Rehab twice a week (that's just kind of like a personal trainer at the gym but with oxygen and they check your vitals a lot). It's nice to know that I am not the only one who struggles so hard to do the right thing despite being sabotaged by my own body. Cheers to us ALL!!!!!
  • Vananners
    Vananners Posts: 19
    suzy0317 wrote: »
    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.

    Hashimoto's here. Also, RA "markers" in my blood tests.

    I can't see where you can search in the groups section and I can't find this group. Can someone post a link to it?
  • happychic
    happychic Posts: 43 Member
    Diagnosed last year with lupus. I've gained a lot of weight with the meds and fatigue. I find it hard to exercise and when I do I can't keep up with my exercise buddy. It's frustrating!
    Would love to have some friends that understand the struggle....add me :)
  • tink11464
    tink11464 Posts: 119 Member
    I have Rheumatoid and Psoriatic arthritis, Fibro, hypothyroidism, anemia and low vitamin D (throw in PCOS and now we're having fun - NOT). I've been on here about a year and a half - - lost 90 lbs - - but in the past 5 months - gained back half of that by eating microwave popcorn non-stop. I know the right things to do and eat for me (low carb - I lost the weight by staying under 100 carbs a day). Broke my ankle around September and had to wear boot/brace for 4 months. UGH. So between the popcorn addiction (trying so hard to wean off of it - think I must be lacking sodium or something), and not being able to walk (was my only exercise when I lost the weight), the weight came back. I need to re-focus and forge ahead :)
  • deva110913
    deva110913 Posts: 6
    edited February 2015
    I have lupus and RA. Please feel free to add me. The pain and fatigue have made this hard but I'm determined to try anything to get healthier!
  • Debsyjo
    Debsyjo Posts: 2
    I am 46 and with MS for 8 years now. :( Need to lose 40 lbs so that I start to feel a bit more like a human being again (and not an NHS pin cushion!) Meds have helped pile on some pounds but most of it is all my own work; became ill, forced to quit work, discovered daytime TV and the sofa. Washed down with a helping of self pity and mini cheddars and hey presto! :#
    It's soooo hard trying to stay relatively fit when your body is screaming at you most days.. Managed to do 20 minutes Xbox fitness this morning and paying for it already, and not in a good way. :'(
    Anyone feel like adding me please do, I rarely bite now (uses too much energy anyway!) and would love to swap day/week stories with others in the same situation. :)
    Debsyjo xx
  • nsoss
    nsoss Posts: 34 Member
    Have Graves Disease and Celiac.

    Clean eating made a big difference for me.
  • brlrcr22
    brlrcr22 Posts: 6
    I have Rheumatoid Arthritis and Lupus and have "markers" for another autoimmune disorder but my doctors just haven't been able to give it a name yet. feel free to add me as well.
  • JenniferLynWhatx
    JenniferLynWhatx Posts: 141 Member
    Hashi's
    Feel free to add me
  • JenniferLynWhatx
    JenniferLynWhatx Posts: 141 Member
    MariettaDelene wrote: »
    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).

    What is your anti inflammatory diet? I had my gall bladder removed a few years ago and now it's like Russian roulette when I eat whether or not I'm going to spend the next few hours in horrible crampy pain.
  • LEJ2015
    LEJ2015 Posts: 25 Member
    I am currently suffering from 2 autoimmune disorders as well and I would love to gain more friends on here who are going through the same struggles. I have quite a bit of weight to lose and this journey isn't easy so having friends who understand where I'm coming from would be nice. Please feel free to add me if any of you are interested as it would nice to have motivation from other and to motivate you all. Thanks!
  • superexcellently
    superexcellently Posts: 25 Member
    Pernicious anemia for me. Untreated. Doctors don't believe me when I say I eat meat and take vitamin supplements...
  • cynderella_1
    cynderella_1 Posts: 1
    I have RA, Lupus and had treatments in 2010 for thyroid cancer. Trying for a healthier lifestyle to manage the pain and fatigue! Feel free to add me! I'm from NB, Canada :)
  • EmBurnie
    EmBurnie Posts: 3
    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.

    Same here, but diagnosed as an adult. I was always overweight and gained more in college, then 12 years ago I lost 80 lbs and felt great, was very active for the first time in my life (at 22) then after 2 years BAM went from walking 10k 4 times a week to bairly being able to walk around the house. Doing much better than that now, but every day is a strugle and I've gained back 60lbs, which doesn't help.
  • duckykissy
    duckykissy Posts: 285 Member
    I see a lot of people asking for the link to the Autoimmune club group (hopefully that works): http://community.myfitnesspal.com/en/group/101948-autoimmune-club

    For those with thyroid-related issues there is this group: http://community.myfitnesspal.com/en/group/753-hypothyroidism-and-hyperthyroidism
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