Any Lupus or PCOS buddies out there

julz5150
julz5150 Posts: 25 Member
in Motivation and Support
I have SLE (systemic lupus erythematosus) and PCOS (Polycystic ovary syndrome), I was just wandering if i anyone else out there on MFP is dieting with either of these conditions. If so hows is it going for you? Any advice? And, of course please feel free to add me, I'd love to stay in contact with other's who are experiencing similar issues.
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Replies

  • swimmchick87
    swimmchick87 Posts: 458 Member
    I have PCOS, although I think mine is pretty mild. I have heard you really need to do low carb, but I've tried low fat/low calories with success in the past, and I LOVE carbs...so I'm going to try that and then if I find myself really plateuing for a long time I'll look into cutting the carbs.
  • julz5150
    julz5150 Posts: 25 Member
    Do you take anything for your PCOS? i'm currently on metformin which really seems to help me out with keeping everything regular and it does help with the weight a teeny bit. I love carbs too!!!! Maybe its a hormone thing lol. I'm trying to eat less carbs but more than anything i'm doing low calories
  • kateparedes
    kateparedes Posts: 17 Member
    Hey there,

    I've had PCOS for almost 3 years now and have been on the Pill to control my hormones. Gained a bit of weight from the pill when I first started, and I have to admit that weight loss comes with a lot of sacrifices because of the hormonal imbalance that usually wreaks havoc on my appetite.

    I'm on a mostly protein diet right now and it's been working for me so far. My ob told me that I need to lose a bit of weight and keep my sugar levels low to avoid diabetes which is associated with PCOS. So I'm going for a healthy diet and regular exercise to be more fit. Hopefully, my next trip to the doctor would show that the PCOS is gone!
  • swimmchick87
    swimmchick87 Posts: 458 Member
    Do you take anything for your PCOS? i'm currently on metformin which really seems to help me out with keeping everything regular and it does help with the weight a teeny bit. I love carbs too!!!! Maybe its a hormone thing lol. I'm trying to eat less carbs but more than anything i'm doing low calories


    I'm just on the pill and several acne medications (acne is due to the pcos). My dr. thinks i don't need metformin yet.
  • julz5150
    julz5150 Posts: 25 Member
    Yeah I had to go off of the pill due to my lupus (it puts me in the high risk category for blood clots), so the metformin keeps my periods regular now. Well now that they adjusted it, I started at 500mg and they had to raise the dosage to 750mg to keep me on track, but i think we have it all set now.
  • RillSoji
    RillSoji Posts: 376 Member
    I have PCOS as well. Really stinks for the weight loss. I'd love to get off birth control pills but I'd never have a regular period and my lining is too thick not to shed every 28 days. Plus I've developed painful (ugh) ovarian cysts. The pills are supposedly preventing more from developing. I refused any other medications. I'd rather self medicate with the right food. ~_^

    But as far as acne goes, I quit drinking cow's milk and reduced my other dairy intakes by about half and the acne completely stopped except for maybe a blemish or two during my period. THAT was a miracle let me tell you. My doc said something about the high hormones in the milk from pregnant cows was probably affecting that. I just use almond milk on my cereal now and drink water. Not worried about calcium since my green veggie intake is high.

    I've noticed a lot less hair in places I don't want it too. I still get it but not nearly as much. I don't know if that's dairy related or if that's more related to my other healthy changes.

    Here's some of my fav resources if you're interested:

    http://poweroverpcos.com/blog/

    http://www.drfuhrman.com/default.aspx

    http://www.wordofwisdomliving.com/

    http://www.health-actually.com/
  • rydanip
    rydanip Posts: 62 Member
    Hi Ladies

    I have PCOS too. I have had a hard time losing weight, let me tell you. I've lost a about 50 lbs but its taken like 2 years. I am really trying to lose another 60-75, and hopefully within this year. I have periods where I exercise ALOT and really watch what I eat but I never notice much of a difference from when I am moderately watching everything. I have read that with PCOS and Insulin resistance you have to really watch your starchy carbs to see steady weight loss. I HATE diet rules where you exclude whole food types. But I'm thinking if I do then maybe things would speed up a bit. Any tips or help I would love :-) Nice thread
  • RumOne
    RumOne Posts: 266 Member
    I have lupus and fibromyagia. I have been a Re-Newbie for almost 2 weeks and it is going pretty well. I am trying to walk everyday and stay under my calories... So far so good
  • fizzboot
    fizzboot Posts: 1
    Just been diagnosed with discoid lupus and have had PCOS for years! Am on metformin but am just exploring links between metformin and discoid lupus just in case I need to stop that.

    Did weightwatchers for a long while and lost weight miraculously and then it began to slow and slow to a stop. Am on a lowish carb diet now - one slice of bread a day, free hand with lower carb veg (no parsnips or potatoes) and lots of protein but no cake, biscuits, pasta, rice etc etc and the weight is chipping off slowly. Am 44 years old, 5ft 2" and am down to 10st 11lbs - so just over a stone to go. Keep my carbs under 100g a day - aim for around 60g and the weight is chipping off VERY VERY slowly but it IS going. As long as I throw this last stone by Easter next year that'll do me.

    Makes me mad when I read comments from people about 'you're only fat cause you eat too much and don't exercise enough" - PCOS is a battle in itself!!!! As for the discoid lups am determined to manage with creams cause if they give me steroids I am BOUND to gain weight. My body hates medicine - (have had problems with steroids and with any progesterone pills in the past).

    Anyhoo that's me.
  • eilispha
    eilispha Posts: 3
    Hi I also have Lupus and it sucks. I've been diagnosed about 8 years ago, that was after spending 7 years taking off weight and finally got to a good place and then BAM I'm all fat again. So now I'm trying to lose weight and fight Lupus which in itself put weight on. I feel that no matter what I try or have tried I will never be in a good place again. By the way I'm not saying I want to be super thin, I want to be comfortable thats all.

    Good luck to you!
  • ChristinaR720
    ChristinaR720 Posts: 1,186
    I have Lupus (MCTD = Mixed Connective Tissue Disease), and am just starting my weight-loss journey. So far, I have noticed that the hardest part for me is mustering the energy to exercise. I am always tired and achy from the disease, and the exercise seems to exacerbate those things for me.

    Thanks so much for starting this thread! Please feel free to add me!
  • westonhive
    westonhive Posts: 56 Member
    Diagnosed with PCOS, Began taking 1000mg of metformin Oct 1st 2012. I am down 11 pounds.
  • starjewel16
    starjewel16 Posts: 18 Member
    I'm 21 and was diagnosed with PCOS at 15 or 16. I don't take anything for it, I took birth control pills for a year from 16-17 but all they did was mess my body up in horrible ways that I've never recovered from. I've found a supplement that is specifically geared for PCOS, it's called Pregnitude. It's mainly for women trying to get pregnant, but I think you can use it either way. It's supposed to reduce insulin resistance and help regulate cycles. I only took it for a few days (gave me horrible mood swings) but once life settles down a bit (military family) I will try it once again. We've been trying to concieve our second baby for nearly 11 months now. I'm hoping that me losing weight will help us get pregnant again.
  • LisaRobyn73
    LisaRobyn73 Posts: 10 Member
    I have Lupus and PCOS too. I was diagnosed with Lupus back when I was 16( but symptoms started at 12), so I pretty much don't remember not having it. I also have PCOS and am on BC pills which help keep my hormones in check. Luckily at the moment I am not on any meds for my Lupus and am doing ok. Feel free to add me if you'ld like :)
  • RachelSRoach1
    RachelSRoach1 Posts: 435 Member
    PCOS here and on metformin. I'm only on metformin again after a 4 year gap... but before I lost 100 pounds with its help so I'm looking to repeat that. Friend me if you like.
  • starjewel16
    starjewel16 Posts: 18 Member
    I find it interesting that so many people have the combo of Lupus and PCOS, I wonder if there is a link? I've had a lot of the symptoms of Lupus for years but none of the doctors I've been to can ever figure out what's going on.
  • DebbieLyn63
    DebbieLyn63 Posts: 2,654 Member
    I had PCOS in my teens and 20s and had trouble getting pregnant with my first child. Clomid helped me get pregnant, and after delivery I learned to eat healthier with fewer carbs. Between diet changes and having one child, I had 2 more successful pregnancies.
    Lower carb/Low Glycemic Index diet helps me a lot.

    I also have mild RA, and an autoimmune type spinal cord disease and I found that strictly limiting my processed sugar helps me tremendously with inflammation, reduced pain, reduced fatigue.
  • DebbieLyn63
    DebbieLyn63 Posts: 2,654 Member
    A tip for you ladies with PCOS, if you lose weight and lower your carbs, you can greatly increase your fertility, so use birth control if you don't want any surprises!
    It happens a lot.
  • starjewel16
    starjewel16 Posts: 18 Member
    haha I hope it works that way for me! Been TTC our second baby for 11 months now.
  • mgobluetx12
    mgobluetx12 Posts: 1,326 Member
    I have lupus and also an underactive thyroid. I've been logging my food since July and I've lost 40lbs so far. I thought I'd go into this losing 10lbs a month because I have a lot to lose, but it's not that simple. Just be patient and it will come off if you log your food and stay under your calorie goal.
  • pland54
    pland54 Posts: 132
    Sorry to hear you have both of these conditions! I have lean-type PCOS and my sister-in-law has lupus. My grandmother also had lupus, but I never knew her.

    I'm trying to follow a low-glycemic diet, but it's tough and I have a lot to learn!
  • Cajunfrys
    Cajunfrys Posts: 1
    Was diagnosed with PCOS in 1997 and with SLE a week ago today. Immune issues apparently run in my family as my mother and uncle have RA, my sister has psoriatic arthritis, and some of my nieces have PCOS, so now that I have been diagnosed and we know that the symptoms mimic and are similar, they will be tested for Lupus as well.

    Shocking and unsettling first week. So much to learn and figure out!
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
    My lupus is in remission. My advice is to be patient with yourself and do as much exercise as you can without making things worse.
  • savingkadee
    savingkadee Posts: 43
    As far as physical chronic illnesses go I am diagnosed with lupus, fibromyalgia, and poly cystic ovarian syndrome and a whole combination of mental illnesses. Some days are so difficult but there is hope.

    Feel free to add me! :)
  • tlou5
    tlou5 Posts: 497 Member
    I have SLE. It has done really well since I went gluten free (After the drs figured out I had Celiac Disease too), and after years of inactivity I am able to exercise again and feel pretty optimistic about the whole weight loss thing. Feel free to add me if you need friends/ support!
  • JoDesaLyn
    JoDesaLyn Posts: 3 Member
    I have recently been diagnosed with PCOS
  • atibrat
    atibrat Posts: 70 Member
    I have Lupus-Mixed Connective Tissue Disease and just started to get serious about losing weight. I can't believe I have never heard of PCOS and so many people have it. I am 51 and the was diagnosed with MCTD 3 years ago but was sick for about 3 years before that. Unfortunately and maybe it is because of my age it hit hard and has not eased up in 3 years. Just last year I was diagnosed with COPD because of the Connective Tissue Disease. I never had asthma, have never smoked or had breathing problems before last year.

    Exercise is very hard for me now because I get exhausted so easy and pushing it only makes me worse and in bed for a day or 2 but I am starting to make healthier food choices 1 meal at a time. I am so motivated that it seems everyone who logs in on here and logs their food loses so I am committed to logging in everyday.

    I have always tried to do things the hard way - all or nothing so now I am learning to take baby step, relax and just commit to stick with it.

    Please add me as a friend if you have SLE or Mixed Connective Tissue Disease. I do not know anyone personally that has it and it would be nice to talk to people who understand.

    I have to admit having this disease has forced me to slow down (way down) lol and have the time to realize what is truly important in life. I actually stop and smells the flowers now so good things come out of everything.

    Tammy
  • blessedmomof3girls
    blessedmomof3girls Posts: 61 Member
    I just diagnosed with PCOS yesterday although I have known I've had it forever, I just finally got a doctor to listen. Would love support! :)
  • Lindsay_October
    Lindsay_October Posts: 1 Member
    Lupus and PCOS. I was on metformin for a while but it quickly started to damage my kidneys. As of right now I am un-medicated. I feel like crap a lot but I'm trying to stay off meds as long as possible. As for losing weight..... Well I've been struggling with this for over 10 years. It's not been easy.

    Good luck to you! ❤
  • treehugnmama
    treehugnmama Posts: 816 Member
    I know this is a super old thread but Lindsey tell me more about kidney damage and metformin. Could it have been from anything g else? I had an in depth conversation with Dr and pharmacist and both told me that kidney damage not associated with met. I do not doubt you would like to hear more. Hope your kidneys are good since being off of met.

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