Finding My Voice, Finally
Hey y'all. I'm Dori. I'm 18, and I've been dealing with PsA since I was 16. My life looks nothing like what I predicted. I'm learning that sharing your story can help with coping, so here I am.
My first signs of PsA pain
In November 2019, I was babysitting for a young family in our church. Shoes weren't allowed in the house, so I was in my fuzzy socks, as always. The night was going well; the kids were getting along, nobody needed a new diaper yet, and they liked the movie we were watching. After a while upstairs, the kids were getting restless. I decided to take them all back downstairs. The toddlers held hands as we walked down the hardwood stairs. I held the baby in my arms. Then without any warning, I was on the ground, and the kids were crying. I had slipped and fallen down all of the stairs. I hadn't been able to brace myself, as I had made sure to clutch onto the baby. As soon as I had realized what had happened, my immediate reaction was to make sure the kids were safe.
Later that night, I was sore and shaken, so I curled up with my heating pad. My lower back screamed at me. Fast forward a few months, my pain was worse and unrelenting. Lower back pain and sciatica clung onto me every waking moment. By March, we had tried countless treatments, medications, and specialists. An MRI revealed a couple of bulged discs, so I was constantly in PT.
No results from physical therapy
After a while of doing my exercises faithfully with no results, my PT referred me to someone else. We went to a chiropractor out of state. He told me that the discs were likely not an issue anymore, but I did have a twisted and tilted vertebra. He fixed that, and when I still did not improve, he recommended we see a rheumatologist. He explained that this acted like a possible infection or immune response.
Seeing a rheumatologist
We visited the rheumatologist (who is still my rheumy) and he had lots of questions. By this time, it was the summer of 2020. We tried new medications with him which still did not provide relief. I began doing water therapy on my own, as I saw no more use for my water PT (I had memorized all of my exercises). When still nothing helped, my rheumy sent us to a pain specialist. He diagnosed me with sacroiliitis.
We then did injections and procedures with him. One of these procedures finally helped... for 3 weeks. After that, none of them touched the pain. He was confused and I was weary. I had no hope that I would ever get the help I needed. He then wanted to try a nerve ablation. My parents weren't sure about this, as I was only 17. We figured that it was our only hope at that point, so we scheduled the appointment.
Skin involvement: a psoriasis diagnosis
The night before the ablation, I broke out with a horrible butterfly rash. I had been getting these rashes every night for a while, but this one was severe. My parents called off the procedure, suspecting an autoimmune issue. We got into the rheumatologist as soon as possible. He agreed that we should explore the possibility of an autoimmune response.
At that time, I had struggled with an itchy, painful rash in my armpits for a couple of months. I thought I was having an allergic reaction to some deodorant, so I thought nothing of it. When my rheumy saw the rash, he referred us to a dermatologist. My mom and I laughed during our drive there. How was a dermatologist going to help my back? Plus, my rash had cleared up anyway. What was the point?
The visit was quick and simple. She told us to come back if the rash returned. We went our separate ways. Then, about a month later, my armpit rash came back with a vengeance. Since we had had a consultation, we were able to get into the dermatologist quickly. She biopsied it and the results came back: psoriasis.
My mom had been reading about PsA before the diagnosis, as I seemed to have many of the symptoms. When she told me about it, I brushed her off. Psoriatic arthritis? Really? That doesn't sound serious enough to compare to this crazy pain I'm in! Ugh!
Officially diagnosed with psoriatic arthritis
In December 2020, when my rheumy got confirmation of my psoriasis, he officially diagnosed me with trauma-induced PsA. He said my fall likely released it full-blown into my system. At that point, I decided to google it.
Wow. I teared up when I read about PsA. Everything I had been dealing with was there. I felt completely seen; someone understood. I decided that the only thing for me to do was embrace my diagnosis. I joined this community, and I've learned so much.
How did you feel after being diagnosed with PsA?
Still experiencing pain, but have hope
I've been on Stelara since February 2021, but I haven't seen any improvement. Here I am, almost 2 years after my fall, with no relief. Actually, I'm probably worse than I was, pain-wise. My knees have joined in on the fun, as well as uveitis, bruising, fatigue, and so much more.
While my pain may be worse, I am so much better off than I was 2 years ago. I know what's happening in my body. I have a medical team. My friends and family have read about PsA and have learned more about what I live with. I have benefitted so much from joining this community.
Comforted by faith
I definitely still struggle, and we're still searching for answers. I will be going to college late, so I have to sit on the sidelines, watching my friends move into their dorms and live their normal lives. But I hold onto hope. Not just the hope of getting better, but ultimate hope in the Lord. God gives me strength for each day and comforts me in the darkness. My church family has blessed me endlessly, and I am surrounded by prayer. I know that no matter what happens, God has me in His hands, and for that I am thankful.
Being so young with an invisible illness has been extremely difficult, so if you're struggling, please reach out. I would love to chat and help in any way I can. Keep your head up.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?