I was diagnosed with RA when I was 12, I’m currently 23. I’ve been steady on Orencia and Methotrexate for around 8 years. Last year I dropped the Meth to get on a Accutane and have remained off since I’m entering my child bearing years. Since then I’ve only been on my biologic and birth control.
I’ve been noticing what feels like extreme joint pain in my hips and knees, not common joints for RA. I can’t sit or stand for more than 20 minutes without discomfort. The worst is driving, good thing that traveling is 80% of my job… When I stand after sitting for too long I have to hobble around for nearly 5 minutes before it works itself out. Sometimes it doesn’t.
Inflammation level is still at zero, my doctors sent me to PT for IT band issues. The pain is high on my hip and not on the outside where the IT band lies, more on the inside of the hip near my diaphragm. I was going nearly 4 times a week, this is just impossible for me to fit in my schedule. They’ve tried stretches, massage, strengthening, ultrasound, and Dry Needling. The biggest difference I would notice is after the dry needling, except it would come the morning after, so I’d be in pain until then. Some mornings I would wake up unable to walk because of the pain in my hips.
I’ve also noticed muscle soreness around my elbow and tightness in my shoulder muscles. I have some small dry patches on my feet, which isn’t uncommon since I sometimes break out with psoriasis. I am tired all the time, which again isn’t a huge shocker. I usually sleep 8-10 hours a night and sometimes need a short nap to get through the afternoon.
Because of medications I’ve always been at risk for medically induced lupus but muscle pain is such a small symptom. I’m angry and sad a lot, mostly with the fact that I’m a young women trapped in the body of a 90 year old. I worry I’ll never be able to have children, how can you be a mother with chronic pain and extreme fatigue? Let alone the idea that I could pass this along to my own children.
I need a solution, I don’t believe this is an RA symptom since my levels are zero, could this be Lupus or another autoimmune disease? Is this just an IT band issue? Could this be something as a cause from the immune suppressants?
Any suggestions will help, thanks.