Any Lupus or PCOS buddies out there

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  • pland54
    pland54 Posts: 132
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    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
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    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
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    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
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    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
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    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
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    I have recently been diagnosed with PCOS
  • atibrat
    atibrat Posts: 70 Member
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    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
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    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
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    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
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    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.
  • Kaylyn07
    Kaylyn07 Posts: 53 Member
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    Just recently found out I have PCOS, and not really sure what to do as far as diet goes.
  • dustyf31
    dustyf31 Posts: 1 Member
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    @mgobluetx12 what is that you are doing? I have tried everything and just recently go diagnosed with lupus 4weeks ago. I have had pcos for about 3 years. I can't loose weight for nothing. I recently see the scale keep creeping back up. I can't do keto it makes me so sick anything that will help me I would appreciate it!! Thanks!!

    @starjewel16 I have researched the link between pcos, endometriosis, and lupus and there is a significant link between them. I recently had a hysterectomy due to pcos, cysts, fibroids and I was hemorrhaging every month for about 12 days. I didn't start showing signs of lupus until 3months after surgery. I did some research and found that women with lupus in a study I think it was like 40% of them had pcos and endometriosis! I was shocked. plus pcos runs in both sides of my family! Insulin resistance also. its crazy...
  • Sanriohippie
    Sanriohippie Posts: 76 Member
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    I’m now on a plant based meal lifestyle and it’s subsided most of my PCOS symptoms. I’ve lost a little over 30lbs since making these changes. However,every body is different. Maybe try experimenting with different foods and your macros to see how you’re body responds. Good luck!
  • vca1993
    vca1993 Posts: 15 Member
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    I have PCOS! Feel free to friend me! Just joining this and still trying to figure everything out!

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