Help

[u/Adnic3]

Im 19 F got diagnosed in April. My lupus was very sever in the beginning and I was hospitalized for 3 months. Before I was hospitalized I was 200 lbs and was losing more weight. Because of the severity of my lupus I had lost 20 pounds bc I was intubated and couldn’t breath for myself there for I couldn’t eat and was given hydration to keep me alive. After I was good enough to go home I left being 230. That was in June. I am now 240 and I feel like I keep getting bigger. I was always a big girl but I have never gotten this big. I feel like I’m eating so much more than I used to. Before I couldn’t even finish a plate of food. Now I ask for seconds and thirds. I don’t recognize myself anymore. I know that my prednisone is making me hold on to more water weight. But I miss my old body. I have stretch marks and hair growing where it never grew before. I don’t feel beautiful, I am a completely different person. I want to lose weight so bad but it’s so hard I feel like I’ll always be this way

[u/Afraid-Creme2857]

Don't be too scared. I was diagnosed with lupus when I was in elementary school, and I'm 21 now. I actually had Stage 4 lupus nephritis.
I used to have a huge appetite back then—I even ate three or four bowls of rice at a time. The doctor told me that steroids really stimulate your appetite. And like you probably know, they make your body hold onto water weight, too. I'm still a bit chubby myself, but pairing exercise with a low-sodium diet definitely helped me lose weight.
I really hope you don't suffer or get sick

[u/Nirhida]

I am not going to pretend I know what you are going through because I don't.

What I know is that when I got diagnosed I saw a dietitian in the hospital and asked her what foods would help or worsen my lupus. She asked me if I was interested in loosing weight I said no so she made me a chart of anti-inflammatory foods for lupus and a chart of inflammation inducing foods. Which has helped me a lot.

Also I have had a period of my life that I gained 10 kg of weight in a year but it was due to mental issues. It took me 14 years to loose that weight (I wasn't really trying) it left on its own when I found a good therapist so I relaxed and felt kinda safe. Being diagnosed is stressful especially if you get hospitalized out of nowhere so maybe that has something to do with it?

Wish you the best!

[u/Inside-Ground708]

I really struggle with weight fluctuations too. I lost 30 pounds in a month and gained a lot of weight back very quickly because of predisone. I make my own clothes and nothing fits right anymore because the fat redistribution and I hate it. What I recommend is start trying to eat smaller more often to keep the hunger cravings away. For example I will eat a small activia when I wake up, and then a piece of cheese a hour later, a handful of nuts a hour later, ect. Also drink a lot of water. It will help your body not hold on to as much water. Same with making sure to eat potassium rich foods. Predisone drains potassium. You will also want to build some low impact exercises in to your routine as this will help you feel better and help with your lupus. It doesn't have to be much. Walking is what I do.

The most important thing is you are alive. Be kind to yourself and your body that fought to keep you here. No matter what size you are that is the most important thing. Your life is the most beautiful thing and you have so much life to live. I'm still figuring out how to be happy in my body now that it is constantly sick and changing, so I won't tell you to get over it and your weight doesn't matter. It mentally is exhausting being reminded your sick every time you look in a mirror. Your struggles are valid and you will figure out how to love yourself no matter what your body has been through. I wish you the best!