I’ve been stuck in a flare for over a year. I’m on my 3rd rheumatologist, I’ve seen 2 pain management doctors, and a chiropractor in addition to multiple primary visits. My symptoms are not managed. I’ve lost all quality of life. I’m anti-pharmaceutical but have tried several prescriptions through the year. I’m really frustrated and would love to know what works for everyone else. I’m no longer working and almost completely bed ridden.


Systemic Lupus Erythematosus (SLE)

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  • Butterfyi


    Hey there my rheumatologist shared that I had to get up & get moving. She shared that the bed will take your strength, I was told by my Primary Doctor to change my diet to gluten free, only meats are turkey, chicken, lamb, fish oh yeah seafood, only baked, grill, air fried, steamed. No sugar. Rule of thumb if it’s white don’t bite. Cut out the starches because what you don’t burn turns into sugar. Take your meds daily and if you can try to exercise even if it’s just sitting in a chair and moving your legs & arms up & down. Stress is a very bad thing, so if it’s possible eliminate all that you can. Hope you feel better soon!

  • Mamashari


    My natro, put me on an AIP diet mixed with low dose naltrexone. I was on it for a year and now I am able to be done with it and this has been effective at putting my symptoms at bay. I know that doesn’t necessarily work for everyone. But it’s a drug commonly used for alcoholics trying to kick the habit and helps with some of the pain messaging to the brain. For me my inflammation with at least both these things went down

  • Ivone


    Hello StickyCJ , I’m sorry to hear what’s going on sweetie. What helped me the most is eat keto clean. Of course everyone is different specially with Lupus. You can try it if you feel it’s going to help. I know the feeling when doctors have no idea what we are going through. There is a Lupus foundation. I’m suscribe to AZLUPUS.ORG from Arizona. They helped a lot. We have meetings via zoom very often and support group. I wish you have the help that you need. Please excuse my English :) I just arrived 18 months ago to this country. Have a wonderful day. I know you can do it honey you never give up. Love & Light Ivonee P.

  • Wonderingwildflowers


    Might need more aggressive drugs. I’m on a chemo drug once a month, plus all the meds I meed and having to eat healthier, I do the AIP diet and trying to do a lectin free diet. Definitely need to get up and move. Even if it’s just a little bit. You can just sit up and move your arms and legs. Whatever is the most comfortable but moving around can help. Drink water. Find something to fight for. Your Rhemotologist might need to treat yours more aggressively. Mine had to do that. It will be okay

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