Like many of you I have been to hell and back with health problems. I currently have double hip dysplasia with labral tears hip impingement and bone bumps on the head of my hips. I also have disc degeneration disease in my back. Oh let me mention that I am 31 years old. Besides that I have extreme joint pain and that at times makes it impossible to do much, my feet hurt at all times, my eyes burn and hurt, I have a constant fever and have had thrush in my mouth for a year. I have great difficulties with my bowels and bladder and everyday I feel like I have been hit by a monster truck over and over again. I have been to so many doctors and I’ve remained a medical mystery to them. I even seen a rheumatologist and was told that I have fibromyalgia and sent on my way. I had given up I deal with everything. On Friday I decided to go to see an orthopedic doctor about injections in my arms. I was told I have tendonitis and they have become very bad with swelling and huge knots. He looked at my arms and then started asking my weird questions. He was able to review all the testing I had done at a local hospital then asked me if I had a rash anywhere. Well yes I have psoriasis pretty bad on my scalp. That’s when he told me I have psoriatic arthritis. Why had NO doctor asked if I had a rash?! I am almost hesitant to accept this since I have been told I have so many different things and that they could cure me. The horrific things that have been done to my body then they turn around and say sorry I was wrong I can’t help you.
I am angry so angry. The symptoms fit the misery that I have felt for the last 10 years. I would like to try and do what I can with out medication yet. My mom was recently diagnosed with RA and had went down hill greatly since starting treatment and I am not ready for this battle. The last time I was given a medication my body didn’t like I had touretts for 6 months.
The fatigue I think is the worst. It is mind numbing at times. I can asleep standing up in the shower. Sorry to unload on everyone.
I’m sorry you’ve been through so much. We’ve got some great information in the newbies section. Without proper diagnosis it’s impossible to be treated properly. It sounds like you’re experiencing some damage already.
I was lucky. I was diagnosed at 36 years old pretty fast. My mom was not diagnosed until the disease had been active for over 15 years. Thankfully (?) the damage was somewhat limited to destroying her finger joints. Surprisingly, she is feeling much better since starting treatment, as much of what she thought was getting older was actually PsA working on her.
My point? I know that you are new to the group and the diagnosis, and some of the meds can look pretty scary. But as someone who was diagnosed in her thirties, I was pretty horrified at the thought of what damage could occur over the course of my lifetime. We have a saying here, fear the disease, not the meds. My side effects have been fairly minimal and manageable, and the meds have slowed progress.
Please do unload. What has happened over the past 10 years sounds like one long medical muddle, it must be very difficult for you to take on board a new diagnosis and simply feel like you've arrived. It's going to take quite a while to sink in I'd imagine.
I hope we can help you acclimatise to this new reality you've landed in! You know, in time you could look back and think that this PsA diagnosis was a very good thing to have happened.
Hi and welcome Stephanie
I really empathize with the ordeal you have been through,I too have had very obvious psoriasis since I was six years old,and have only received the correct PsA diagnosis last year,despite seeing many rheumatologists over the years.I am now 50.
Your frustration and anger is totally understandable,and most of us here,have experienced that.I hope you can find a treatment plan that works for you quickly.Please keep us posted on your progress
Hi Stephanie. I’m glad you have found this group. You have a safe space here to vent and share.
For me the fatigue was the biggest challenge. Fortunately I was diagnosed quickly, and am on a medication combo that has me feeling much better. I hope that with your diagnosis you will now be able to move forward and get on medication that works for you, too.