Hey guys! Firstly, happy lupus awareness month:) you matter!!
Now…I was diagnosed with Lupus back in 2016 (I was 13) only one in my family to have it, we had literally never heard of it until then. Pre-diagnosis I was in and out the hospital for chronic joint pain and kept getting sent home with ibuprofen, which obviously would only work for a few hours and then once it wore off, I’d be stiff and locked up again, barely able to stand up. Once I was diagnosed with SLE I was put on a bunch of medication‘s as expected. Fast forward to last year, I was hospitalized due to a major flare that I once again kept getting sent home for (honestly, a bit of my fault because I went to a hospital that wasn’t my treating hospital, but in my defense, I did not know I was having a flare because I was sick with other things aswell.) Anywho, I ended up being hospitalized for just under a month and diagnosed with myocarditis (lupus of the heart) and lupus nephritis (lupus of the kidneys), which obviously changes a lot. So my question for you all is what do you NSAIDS. I have been in search of good pain remedies for a while, I was told to stop taking NSAIDs about two years ago so a year before my nephritis diagnosis because my kidneys were showing inflammation already and obviously because of lupus they want you to avoid the NSAIDs. The issue with that was that I literally used them for all of my chronic pain, I was on 1000 mg of naproxen for my period pain and my rheumatoid arthritis pain that comes whenever I flare or sometimes whenever it feels like it. After my most recent diagnosis of nephritis, I’ve been taking the no NSAIDs a lot more seriously, before I could get away with popping an ibuprofen or two once in a blue moon, but now I’m literally so scared to even take that risk. I have found cold medicine alternatives with no NSAIDs, which is Corcidin and it actually works way better for me than any cold medicine ever has, but I still have yet to find any pain medication that doesn’t affect my kidneys or my liver, Tylenol absolutely does not work on me and it doesn’t target the inflammation it just reduces the thought of the pain honestly. I’ve been pushing through it the last few years, but it’s getting to the point where I’m tired of always being in pain and the summers are only getting hotter and hotter over the years. Any recommendations that would also treat my body the same way that the naproxen did? My rheum has recommended Tylenol, warm compresses, Pilates to strengthen my joints and warm showers and stuff but unfortunately, Tylenol just does not work for me. I guess my pain is just too chronic or too severe. *Cue
Normal Girl - SZA*
Didn’t expect this to be THAT long 😃 but I’d absolutely appreciate your opinions💜
P.s. I don’t work frequently bc my lupus makes it so difficult to keep an actual job so i do uber eats/instacart/shipt when I have the physical capacity. I’m also on SSDI which helps so much with the inconsistency of my income and health (praise God) so that doesn’t influence my health tooo much (outside of occasional financial stressors)