Lupus and Weight Loss

Lupus and Weight Loss
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hurricane-kellie

Daily, we are bombarded with weight loss ads promoting the latest powder, pill, or apparatus that help us achieve that thin look we seem to think is better than the way we look now. I’ve always found many of the methods being advertised interesting; they rarely offer any real health value beyond, possibly, making you thin.

Among the symptoms of lupus, one of the things I actually missed noticing was the weight loss. People would see me and ask how often I was going to the gym. They wanted to know what I was eating and described me as “looking great.” I honestly had no idea my weight was dropping, partially because the number on the scale never mattered much to me; I focused more on living life and enjoying as much of it as possible. That included eating out at restaurants, chomping down great appetizers at social gatherings, and so on. I was not overweight by any stretch of the imagination, but was not considered thin. Being a “thick girl” at just over 5’7″ and 170 pounds, I was happy.

The first time I was sent to the hospital, and stepped onto the scale there, was September 2015; the next time was just a little more than a month later, and my weight was in the 150s. This felt strange but still OK, and since I wore a lot of dresses, I didn’t require new clothes. Having always been a fairly healthy person, and loving to try new foods, I would still often opt for baked, broiled or grilled. When cooking at home, there would always be a healthy option on my plate. Nothing about my habits for eating had changed, yet weight loss was evident. No alarm bells for me yet, although there should’ve been.

‘Scary’ weight loss

By the time January rolled around, my curvy 170-pound body had melted away to 112 pounds. It was scary. Clothes in my closet no longer fit, and there was no desire to shop for anything new — heck, my energy to shop had gone, too. I’d already, at this point, started paying strict attention to not just eating but to everything. A bit of a social media junkie, whenever I shared photos of myself online I would get a minimum three or four private messages. They would either say the person was concerned with whatever was being done to lose this weight, or they would want to know what I was doing so they could mimic it. I would, of course, reveal that no active attempt was being made to lose weight, and would not recommend whatever was happening to me to anyone.

Upon being diagnosed, it was time to start talking more and more about the foods on my table, and why a lot of things were no longer being eaten. Sadly, people say they want to lose weight, but many would prefer to do so in a very unhealthy way, as opposed to making sacrifices to be thinner in a healthy manner. I would love to have my 170-pound body back. For one, I had a backside. Being ultra-thin comes with a lot of downsides, one of which is not being able to sit for any length of time, because I am pretty much sitting on my backbone and that is quite uncomfortable. Since lupus steals a lot of your energy, standing for any length of time can also be a challenge. Partly, this is because when lupus steals your weight, it does so by eating away at the muscle.

Here’s my point — thin does not equal healthy. If you are losing weight rapidly with no explanation, there is cause for alarm. The same can also be said for rapid weight gain. If you are experiencing either of these, contact your physician (I may sound like one of those pharmaceutical commercials, but it’s true). Something is a little off-kilter.  At 150 pound, my prevailing thought was that whatever’s happening is great, but now I realize that losing weight with no real change in eating or exercise habits is cause for alarm. When I now notice people who appear to be losing weight rapidly, I wonder if I should send them a private message, as some did for me.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.
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Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.

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12 comments

    • Kellie McRae says:

      Hi John, you are definitely not alone. This article was written quite some time ago and the weight loss is still one thing that plagues me. At the start of this year, I was down to 99 lbs. I’m happy to say that as of last week, I’m back up to 116 lbs. I credit peanut butter and coconut oil 🙂 Healthy fats with some protein are helping me maintain a healthier weight. I hope you can find a solution as well. All the best!

  1. Gina says:

    Thank you, thank you! I have felt so alone in this. I currently cannot gain and have lost 30 pounds. You normally only hear of weight gain.

    • Kellie McRae says:

      Hi Gina, it’s true! I went searching online for ways to gain weight and there was basically nothing. I just decided to look at what was considered healthy fats and start eating more of them. In January I was literally 99 lbs. now, I’m happy to report that thanks to peanut butter and coconut oil, I am up to 116 lbs. as of my last doctor’s appointment. Finding ways to gain or hold on to the weight we have can be challenging for sure and trying to do it in a way that won’t have us in a donut haze lol is even harder. I broke down and bought some vegan protein powder as well so lots of fruit intake with my smoothies. I wish you the best on your journey, if people only knew, being skinny is not all it’s cracked up to be. Thanks for stopping over and sharing your thoughts.

  2. Piko says:

    Thank you for writing about this. I can’t even imagine how hard it can be morally to go through it. My wife has lost 15lbs but she has MCTD for now so we are thinking that is the culprit.
    Anyhow, these autoimmune processes are hard on body and soul and Can range from very mild to severe so, I am first of all glad to see you are still with us and I wanted to say thanks for writing about this.

    • Kellie McRae says:

      Hi Piko, I agree, there isn’t much that is considered easy with regard to fighting your own body. I think many don’t realize that it can cause you to lose weight. For most people, taking steroids means they gain weight, this is not the case for some of us. I hope your wife can find some relief and get those 15 lbs. back.

  3. Vicky says:

    Thank you so much for this. I too have dropped a significant amount of weight. I’m currently looking for ways to maintain my weight and stop losing 🙁 although the steroids have increased my appetite I wanna make sure I’m maintaining healthily and not eating every piece of cake and pie I see. Lol I’m glad you found something that’s helping you.

    • Kellie McRae says:

      Hi Vicky, is it weird that I am a little jealous when folks gain weight on the steroids? lol, I am a freak of nature and I lose more weight when I cycle on to them. For sure do your best to maintain a healthy way to gain your weight back. I tease and tell people I can eat whatever I want because I have a boney butt, however, I also keep in mind that certain foods cause inflammation and too much sugar can cause diabetes. No need in making things worse but trying to find ways to gain weight, especially as a woman, there’s not a lot of information out there o how to do it in a healthy way. Wishing you the best, if you find something out there that helps, come back and let me know…kinda tired of sore butt bones lmao from being so thin that sitting hurts.

  4. Lori says:

    Hello Kellie,
    I was just recently diagnosed with lupus and sjogrens. I am on prednisone 5mg, some days I have an appetite and some not. I was already a thin 125 at 5 3′. I was initially concerned about gaining, but instead I’m losing and my Rheumatologist has said nothing. I couldn’t take the plaquenil as it caused hives. I’m am so new to this and learning about what works for me and what doesn’t, but I’m still learning what causes my flare ups. I’m glad I’m not alone and there are others that understand what we go through. Btw, did you ever gain muscle strength or mass back? I miss my muscles and strength more than anything…

    • Kellie McRae says:

      Hi Lori, I’m still as thin as the letter I lol I think that lupus causes so many changes as the years go by that you will almost always be trying to figure something out about it. I have hired someone to cook for me so that I eat more regularly and after a few weeks, I excitedly got on the scale thinking, surely I’ve gained something…I’d lost a pound. So I am accepting that somewhere in the 98 lb. range is my new normal. I hope you get your meds and your weight figured out or at least to a place where you are feeling well enough to accept what could be your new norm. Thanks for sharing with me.

      • Jennifer Guy says:

        Thanku for writing this! I just cannot put on the weight and eat soo much ! It has given me such a complex as people keep telling me ..you getting thinner or why ? But i eat so much and all healthy.
        How do I gain weight being gluten free is NB for my inflammation. I am trying to get my muscle gain mass up ..but nothing helps. So concerned and nobody knows what to do to help me.!any advice plse? Jen

        • Kellie McRae says:

          Hi Jen, I feel like a bird over here, I think I am eating my weight in food daily lol I am gaining not one pound. I am accepting that as long as my body is “healthy” that I may never see 100 lbs again. Do your best to tune out what others are saying. If you were heavy, they’d be trying to say you should lose weight. There is no perfection especially when you are dealing with lupus. The only time I have been able to gain weight was when I was eating a significant amount of peanut butter but that gets old real fast. I do protein shakes, lots of fruits, rice, beans, pasta and if that’s not packing on the weight, I don’t know what will. One thing I have been paying more attention to is my bloodwork. If it says I am not deficient in specific nutrients and my aches, pains and energy levels are not in the trash, I am calling it a good day. A 97 lb. day but a good day nonetheless. Wishing you the best, if you find something healthy that works, send it my way, we are searching together to find healthy ways to gain,

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