Constant flare for over a year
I am a 25 y/o female. I was diagnosed with Lupus 6 years ago and Rheumatoid Arthritis 3 years ago. It seems like every year that passes my pain just keeps getting worse. When I was first diagnosed with lupus I was pain free for the first 2 years. As time went on I finally started getting pain and once I got my RA diagnosis my pain continued to intensify.
Fast forward to now, I’m in constant pain. Constant pain, there’s days im at 10/10 pain all day and nothing helps I just have to try and sleep off my pain. This year alone I’ve had to go to the hospital 13 TIMES, simply because my pain had gotten so bad and none of my meds at home would even touch my pain. This is just not ideal at all what 25 year old wants to spend that much time in the hospital.
I’ve tried so many different medications.
For pain I’ve tried meloxicam, ibuprofen, Tylenol, trammodol, norco, oxy, morphine, buprenorphine, cbd, thc and what feels like almost every NSAID to ever exist. For my lupus and RA I’ve tried methotrexate, enbrel, simponi aria, benlysta, rinvoq, plaquenil, cellcept and saphanelo. Currently I am on plaquenil, methotrexate, folic acid, saphanelo, and for pain I’m on celebrex, hydrocodone, tizanadine and lyrica.
Although I’m on a lengthy list of medications I am getting little to no relief. Most days I become completely immobile to the point where I need assistance getting out of bed, going to the bathroom etc and the days where I do feel good enough to run errands that I’ve been putting off I pay the price a few hours later because my pain catches up to me. The pain affects me in every aspect especially my sleep, there is nights where no matter how exhausted I am the pain won’t let me sleep and I end up finally falling asleep around 7 or 8am. I’ve been in constant pain for so long now that I genuinely don’t remember how life was before my pain. This life is draining both physically and mentally. I see other people my age starting families, buying houses, getting married and all of that seems almost impossible at the moment. Meanwhile my peers are doing all that, all I know is going to the hospital and sitting behind these 4 walls.
I’m so desperate to find relief. My question to you all is what should I do? Is there any medications you recommend that I mention to my rheumatologist? My next option is trying Rituxan, I start my first infusion in 2 weeks. Any supplements? Is there any recommendations for my pain? Anything. Im tired of my pain constantly being at an 8 or 9. I know it’s probably impossible to be at a 0 but id be happy even if i went down to a 4 or 5. I just want my life back. Any advice helps.