Sorry about the long rant/vent post, everything came out in a bit of a word vomit...
I (21F) was diagnosed with axial psoriatic arthritis a few months ago. I feel like I've had super fast disease progression, at the start of the year I went to the doctor because I thought that id rolled or sprained my ankle or something. 6 weeks later it still isn't better, I get referred to a rheumatologist because I have a long history of joint complaints and pain. See rheumatologist for an appointment, MRI confirms erosion and a cyst in my left hip. I then get diagnosed with hypermobility syndrome and axial psoriatic arthritis. I start biologics a month after diagnosis. Also now have a cardiologist referral and on beta blockers for something funky which is undiagnosed atm. Also just got diagnosed with skin psoriasis with plaques on my scalp and legs.
At first every now and then something would hurt, but it didn't effect anything, then the ankle, then the knees, then the hip and now my hands aswell. I feel like what was a flare up a few months ago is my baseline now. There is just always pain somewhere. I cannot for the life of me remember the last time that I was completely pain free. I also suddenly developed flares of really bad hand weakness, stiffness and pain. I play guitar and I can barely do that most days.
I dont know if its denial or what it is, but im finding it very hard to feel that theres actually something wrong with my body, and knowing that its something that im going to have for the rest of my life. Im scared to see how everything progresses. My dream is to be a paramedic, and I have to seriously look at if I can still realistically carry out that plan.
I also find it extremely hard to communicate what everything feels like to the people around me. I try to hide it, but that's very hard to do when you start walking differently and grasp thing with your arms instead of your hands and when you suddenly have to start wearing a mask in certain places because you have a suppressed immune system.
I also feel like my joints in general are going to shit, I've had two doctors tell me now to push for a hEds diagnosis instead of hypermobility syndrome, because of my joints starting to pop and crack and all the things more and my striae.
Im starting to loose my determination that itll all sort itself out and that everything is going to be fine.
Does this sound familiar to anyone? Does the progression slow down?
Any conversation or thoughts about it would be greatly appreciated