Newly diagnosed

annyztannyzt Member New Member
I was diagnosed with SLE just 5 days ago. To be honest I was a little shocked when I got the news and did not ask questions at the appointment. I have read about Lupus a lot and seen others testimonies, but I don’t know what to expect, flare ups? I have symptoms, but not sure if they’re related to Lupus, I was told I was diagnosed early, no organ damage, no diabetes or hbp, no rash, I am 40 years old, I was having this episodes of fatigue but always forced myself to function, I have nerve pain in my hands and seeing an Orthopedic dr for it, he said he doesn’t think this is related to Lupus, how will my life change? What do I know it’s a flare up? What to do then? I feel lost. Can you help?


  • ChristenSmith1985ChristenSmith1985 Member New Member
    Hello Annyzt!!

    Your start to being diagnosed with SLE sounds so much like mine. I myself did not ask enough questions and found myself shocked and feeling lost. Everyone's stories with lupus are as unique as the pattern on butterflies wings.. My advice would to not get lost in others testimonies as everyone is VASTLY different and as are there stories. Instead to seek understanding of your own diagnosis and your own journey with this. Use the lupus community for support and strength because we are one great group of people. My advice to you would be to listen to your body as much as you can. Maybe even start a diary of sorts... or jornal... This way when you go to your appointments you can read back to remember anything that concerns you or something that was particularly tough or out of the norm for you. Its so easy to forget the little things (That add up to big things) when you have a new diagnosis on your hands with 1,000 things running through your mind. Log physical things that you do that may cause extreme fatigue the next day. This will help you avoid and understand your own bodies limit and when to not cross that line the next time. Same with your diet some find that certain foods cause muscle/joint pain and or flares of fatigue. I think the best thing someone can do is document there journey if not for their own understanding but to also help show them what things help and do not. Make a seperate list of questions and if you find answers to them cross them off if not bring them up at your next appointment. I am much like you in the fact that as soon as I was diagnosed June 2nd 2018 at 32 years old with joint pain and horrible fatigue which came on about 4 months after having my son. I went out looking for answers and knowledge. The Lupus Encyclopedia (A Johns Hopkins Press Health Book) was an amazing book in my opinion if you like reading and are interested in learning more about Lupus. I wish you nothing but the best through out your journey with lupus and send you lots of love and health and comfort through this. Don't ever stop looking for information to understand the cards you have been dealt and always remember you have a community of Lupies behind you to support and encourage you any time you need it!!!! 
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