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Keweenawqueen

230d

Diagnosed with Lupus last week and I’ve been having an incredibly hard time wrapping my head around it. I just turned 30, and I feel like my whole life is coming to a halt. I’m really scared to start treatment and having to take steroids for 3-6 months while I wait for the plauenil to work. I’ve worked really hard to get to the weight I’m at and I’m scared that’s all going to go out of the window now. I want to feel better, but I also want to love myself again and I’m scared my appearance will change again 😢 I’m going to try an anti inflammatory diet but idk, I guess I just want some support and maybe some tips? I don’t have anyone in my life who knows or understands what I’m going through 😞

Top reply
    • 55isMe

      93d

      I dont know specifically about Lupus, but my aunt was on steroids most of her life. Weight gain is probable, but the trick is increasing your activity. She loved country dancing. Find something uou enjoy and makes your whole body move. I have all sorts of autoimmune over the years. Latest with POTS, being upright just doesnt work. Makes staying active much more tough (plus exercise intolerance too), so i started tracking calories. Since Im not moving much, I'm only using about 1200 calories a day. So, to stop gaining 20 pounds a year (i was only 125 pounds), i had to really cut down on food intake. Sugar the biggie. MYFITNESSPAL is a free app (offers preium version). It makes it very easy to watch calories and make choices on foods.

    • 55isMe

      93d

      I dont know specifically about Lupus, but my aunt was on steroids most of her life. Weight gain is probable, but the trick is increasing your activity. She loved country dancing. Find something uou enjoy and makes your whole body move. I have all sorts of autoimmune over the years. Latest with POTS, being upright just doesnt work. Makes staying active much more tough (plus exercise intolerance too), so i started tracking calories. Since Im not moving much, I'm only using about 1200 calories a day. So, to stop gaining 20 pounds a year (i was only 125 pounds), i had to really cut down on food intake. Sugar the biggie. MYFITNESSPAL is a free app (offers preium version). It makes it very easy to watch calories and make choices on foods.

    • ColorMeHappy

      93d

      One more thing- Most of my doctors never learned about nutrition in medical school. When I shared Brooke Goldner’s book with my doctor she was skeptical but I proved her wrong. She said her patients will usually choose drugs to treat disease because it is easier but I have to tell you that the damage Lupus can cause is devastating. And it is always worth it to try “Brooke Goldner’s book- Goodbye Lupus and Goodbye Autoimmune” because it works for all autoimmune diseases! I am a patient whose life was changed by her medical advice!!!

    • ColorMeHappy

      93d

      Please look up “Goodbye Lupus” by Dr Brooke Goldner. It’s a book on how she cured her disease through drinking smoothies to hyper nourish her body. IT WORKS!!! My bloodwork is negative as are tens of thousands of others on Facebook. It is difficult for sure. It is difficult to give up junk food but much less difficult that the chemotherapy and plasmapheresis I endured 25 years ago. You can get your life back! Life for me with Lupus was constant pain and disability. I was on Steroids for years before I found her cure and have had multiple joint replacements as a result of Avascular Necrosis caused by side effects of the steroids. Her treatment cannot reverse permanent and irreversible side effects but it absolutely can’t stop any further damage. You can get your life back! Please look her up!

    • Treely

      95d

      I would say try to learn really early to love yourself no matter what. This can be a lonely condition finding comfort in being a alone is key. But, also knowing when to ask for help, relzing where you do lack when you flare or just dealing with the fatigue is also important so you don't burn yourself out and make things worse. Self Love Is The Best Love ❤️

    • Igglepiggle

      229d

      I know, I’m 20 I’ve had lupus since I was 16 only diagnosed at the start of this year I really struggle with body image and my weight because of my illness and it’s really hard to deal with and my life halted before it even began, you’re entering grief we all have it I’m still struggling a lot with it but it’s normal it sucks massively that we have to go through this it’s not fair but fight for good doctors who understand the condition and work hard to help you and make your quality of life better it’s taking a long time for me to find doctors that care about my quality of life at all and let yourself grieve seek support wherever you can question your doctors as much as you need and research and learn about your illness as much as you can

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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Based on the experiences shared by others, some tips for managing Lupus include maintaining a clear line of communication with your doctor and advocating for yourself. Most people react well to Plaquenil and it does not increase the risk of illness. Lifestyle changes such as being active again, adding ginger and turmeric to your diet, cutting out most processed foods, pacing yourself at work, and trying to eat a healthier diet can also help. It's important to listen to your body and rest when you feel tired. Anti-inflammatory foods can be beneficial.

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