24f got diagnosed with HLA-B27 positive spondyloarthritis. Doctor was sort of dismissive and did not explain much. I was put on sulfasalazine and some kind of pain medication which seems to work for the most part. This is day 4.
The appointment was very brief and I am not sure what kind of spondyloarthritis he mentioned, since it’s not written on my record yet. Had a MRI of SI joint before the diagnosis and they found mild levoscolliosis of lumbar area or something. No mention of significant edema or anything else. I haven’t been scanned anywhere else yet.
So the thing is, what kind of arthritis is this exactly? My rheumatoid factor is negative. Same with every other panel. Only HLA-B27 and inflammation markers are super positive.
No visible swelling. But really bad stiffness and pain in most joints (knees, elbows, ankles, lower back, neck, back of shoulder, wrists). A looot of crepitus too. Eye dryness that has been there for months. GI issues. My back is kinda stiff. Same with my fingers and knees. It feels like there’s hard elastic bands holding my joints. I can feel some kind of resistance when I try to stretch my legs and hands. The stiffness SUCKS and my joints get achey if I stay still for more than 15 minutes.
My energy has disappeared entirely ever since this flared up and I am finding it difficult to retain information too. No energy even with pain and the arthritis meds. The pain meds have helped a LOT (way better than ibuprofen) but the pain and stiffness still comes up and my energy is absolutely dead. I mentioned this to the doctor but he didn’t seem to believe me.
I am struggling to do anything. I feel totally exhausted after 2 hours of studying (even with breaks in between).
I haven’t been to a rheumatologist yet. I asked my current doctor if there was anything that could improve my symptoms quicker in short term (I have finals coming up and I am not doing well) and he dismissed me. I don’t feel great about anything and all this has taken a massive toll on my academic performance. I looked up sulfasalazine and it says that it takes 4 months for it to help. In that case, I am rather cooked because I feel horrible and can’t even get through my basic tasks these days. I am trying to consult a rheum soon to see if they have any options for short term symptom management.
I had been struggling with progressing joint issues for months (I did not notice the gradual increase) until last month when things just blew up all over the place suddenly. I couldn’t get out of bed for a couple of weeks and even double ibuprofen seemed to do nothing. Found out about the spondyloarthritis after that.
I did do some reading but I am really confused because my symptoms don’t fit anywhere properly. I don’t have spinal damage in the sacroiliac area but my fucking back hurts way more than the normal amount. My joints aren’t swollen but they hurt terribly too, especially my knees, wrists and ankles. My joints can be HEARD (if I move my neck or wrist I can sort of hear it), although I also have hypermobility so maybe that’s why.
What kind of spondyloarthritis is this? I am pretty upset because my doctor sort of dismissed me throughout the appointment and I wasn’t able to tell him about some other symptoms I had. I was told that I needed to do an endoscopy and colonoscopy later and I am not looking forward to that either.
I also want to know: what is my life going to be like from now? I liked skateboarding, climbing, roller coasters and all that. I don’t know if that’s possible anymore.
Any advice is welcome!