I have noticed many of the websites about Psoriatic Arthritis don’t even touch on the scary stuff. Many just mention stiff joints, and aches . Wouldn’t it be a blessing if that’s all it was?
Some go on to mention fatigue and joint damage, and fewer still joint deformity. It was years before I found out my migraines were probably caused by it. There is very little about how aggressive this illness can be.
Very few mention the things that scare me most. Heart attack, and that this illness can attack the organs. It can lead to blindness or auto immune deafness. Yes, luckily these things are rare, but shouldn’t we know they are part of it. I was completely ignorant until I went off my meds without my doctors permission and got a stern lecture from my doctor. If I had known more earlier it may have made for an earlier diagnosis. It took me years to learn that the crushing heart attack feeling pain in my chest and jaw was simply the Psoriatic Arthritis. Just swelling around my heart. Knowledge makes such pain less frightening when we experience it.
I had ear problems and I went to see three doctors and had to ask if it could be autoimmune, they said yes, gave me steroids and it went away. I can’t expect every doctor to know everything about PsA, and I do think I have the most amazing specialist ever, but I would love more information without having to dig so hard for it.