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AnxiouslyPatience

753d

recently diagnosed with Lupus, really just wondering whats next...? where do I start with learning about this and taking care of myself?

Top reply
    • AnxiouslyPatience

      747d

      Joint pain regularly but with sun exposure I get worse joint and muscle pain, I feel like I have the flu. Also migraines, fatigue, and weird scaly skin on my face around my nose and up towards my right eye. I know there's more but that's the main things that come to mind right now. Oh brain fog...brain fog galore, my memory sucks and I can't get words out properly alot

    • AnxiouslyPatience

      747d

      Joint pain regularly but with sun exposure I get worse joint and muscle pain, I feel like I have the flu. Also migraines, fatigue, and weird scaly skin on my face around my nose and up towards my right eye. I know there's more but that's the main things that come to mind right now. Oh brain fog...brain fog galore, my memory sucks and I can't get words out properly alot

    • AnecdotalFox

      747d

      Do you mind if I ask what kind of symptoms you have?

    • Butterfyi

      750d

      I’ll say just getting familiar with your body and learning to listen to it. Remembering that it’s ok to say ‘NO’ when your not feeling good & always put your health first. Nobody feels your pain & discomfort but you. Take your meds and always reach out to your healthcare team whenever your not feeling well and need to see them. Sometimes we think it’ll get better and it could be getting worse & we always try to avoid that. This disease is one that mimic a lot of other illnesses and we can’t let anything slip by use because once the damage is done, there’s no repairs to fix it (kidney, heart, liver, lungs, brain) it’s only maintenance from that stand point.

    • Mountain.Allie

      753d

      I was just diagnosed in January. After some trial and error, we finally found the right meds. I am on immunosuppressants and it has made a huge difference. My energy has increased and I got back to almost normal. I am currently going through my first flair since being diagnosed and it has been a lot quicker to resolve.

      • AnxiouslyPatience

        753d

        @Mountain.Allie are you at more of a risk for infection or becoming sick? I've looked at a few different options med wise and that scared me a little bit

        • Mountain.Allie

          753d

          @AnxiouslyPatience I had an allergic reaction to Plaquenil, so the only option was getting on Cellcept. It has caused me to catch more colds, but I have 2 young children that bring them home. I still wear a mask when in big crowds and wash my hands more regularly.

    • Princessmommy6

      753d

      I'm in the same boat, it's a bit overwhelming with all of the information available

☝ 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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