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My body is swollen all the time.

I was diagnosed with lupus December 7th 2022 after I had a heart attack in October. I have been taking hydroxychloroquine since December 2022. My body is always swollen and I am in pain all the time. I'm still learning about MY new normal and the flare ups. Is this normal? What can I do to relieve the pain?

  1. Hey there, . Thanks for posting and sharing your concerns with the community. You're asking some valid questions, and it sounds like you're trying to get to the bottom of what your "new normal" is. I think that can be very difficult with a new diagnosis like lupus, where each individual experiences it a bit different. Your best bet may be to reach out to your doctor who is prescribing your hydroxychloroquine (HCQ). They might be able to review your current symptoms, and help you determine if your current treatment plan is adequately treating your lupus. Some people with lupus do report being in a pain a lot, and others are able to control their pain through a variety of treatment approaches. Ultimately, only you and your medical team will be able to know what is feasible for you during your treatment, given how individualized the disease is. Hopefully, a few other community members will be along shortly with some tips and feedback on how to manage the pain that you're experiencing until you're able to get to the bottom of things. Warmly, - Cody (Team Member)

    1. ,
      Thank you for chiming in and sharing your experience.
      Not finding the right rheumatologist and treatment is certainly frustrating.
      It's heartbreaking to hear how others (especially in the medical field) don't understand lupus.
      We can only hope to increase awareness and continue to educate others.
      We appreciate you sharing your perspective.
      All my best, Doreen (Team Member)

    2. You didn't ramble. True no one knows much about lupus.

  2. Thank You Cody!! I will make sure that I bring up my concerns and questions at my next appointment. I'm also looking forward to the tips and feedback as well.

    1. welcome to the forum. Sorry you've been newly diagnosed. It's so hard to get everything settled and calm with new meds. It can take some time to bring the pain levels down. I have found that rest and warm baths or showers help. I use creams to help my joints. Pain is one of the nemesis' off lupus. It's hard to say what ones thing will help. It becomes trial and error and a lot of discussion with your doctor. I hope you can find some relief soon. ~Racquel~ team member

      1. Thank you Racquel! The hot showers and baths definitely help a little. Is it a specific cream that you use? I have upcoming appointment and looking forward to sharing this with my doctor.

        1. I have used a cbd cream and tiger balm to help. ~Racquel~ team member

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