AlyxRiley

313d

So I was curious about those of you with lupus what your diagnosis journey was like (if you're willing to share) my new pcp did some blood tests Friday as a start since I was showing so many symptoms and was curious what else I should be expecting?? tia!

Gabapentin

Chronic Pain

Systemic Lupus Erythematosus (SLE)

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  • Melybelly

    313d

    Well first things first, it may be scary and a lot at times. But just remember that everyone’s body is different and it will also affect you differently. So yes listen to your doctors and take your medications but also do a lot of your own research and listen to your body. I’ve learned that doing that has helped me so much more than just taking medical advice. A lot of medical professionals won’t be as understanding to your personal needs as well.

  • Rayningtigress

    288d

    For me, this last year has been rough. All my onset symptoms hit me fast and hard, i was hospitalized. They didnt know what was going on and their still trying to figure it out. I work hard to coordinate with drs making sure anything new is shared with everyone. The first 6months was the hardest cause i flew in and out of the er and urgent care 1-3x a week. I was so happy when that started tapering down. Now im working with drs to work on some of the things that hasn't changed since leaving the hospital like my gait, and my sleep.

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