My diagnosis story isn’t like most others. I got lucky, if you can call being diagnosed with arthritis in your mid-20s lucky. I had been noticing pain and stiffness for a little while. I remember having to soak in the tub for about half an hour and take four over-the-counter ibuprofen pills just to loosen up enough to function each day.
It became much more noticeable after I started a job where I had a 1-hour commute and where I was seated more. I would grunt while getting out of my car or out of my work chair. On the job, I had to crouch down several times a day to switch out boxes of paper. Once, I let out a literal scream when I got up because I was in so much pain.
I knew that wasn’t normal at my age. I asked my mother if she thought I had arthritis. She said maybe, but to see a rheumatologist, you’ll need a referral. So, off to an urgent care I went. To be honest, I wasn’t expecting much there, just enough to hopefully get that magical referral.
The doctor came in, looked at my chart, and looked at me and said, “You have psoriatic arthritis.” He looked at the psoriasis on my skin, pitting of my fingernails and, of course, my pain and stiffness, and quickly came back with the diagnosis.
I’ve made friends with other arthritis patients who went years with no diagnosis or a wrong diagnosis. I got mine at an urgent care on the first try. That is very rare but shows why having general practitioners be aware of many conditions is key. They’re the first ones to see patients and their symptoms.
I now had a diagnosis and a referral. I heard that getting an appointment with a rheumatologist can be an ordeal and take a while. And not to brag again, but I got lucky there as well. I got an appointment with a doctor who was new to the practice, so it was just a couple of weeks instead of a couple of months.
Before and after the rheumatology appointment, I of course went online to see what I could find. This was over 15 years ago, before social media was around. The information I found was a bit more clinical in nature, which wasn’t bad, but the pictures they included seemed to skew toward worst-case scenario.
The pictures of skin and fingers and toes were quite jarring, so I had to remember that my joints and skin didn’t look like that, although my skin wasn’t great. Also, who knew that psoriasis and arthritis could go together? I didn’t, but I was learning.
My skin wasn’t in good shape. I had scales on my arms, elbows, back, sides, knees, legs, and eventually my face. I went to the rheumatologist, and he confirmed it and started me on a treatment plan quickly, once my insurance approved me being on a biologic medication.
The severity of my psoriasis actually helped me later on. My doctor was able to get me approved quicker and on a loading (aka higher) dose at first because of my psoriasis instead of my arthritis.
What are my takeaways from this? You know your body better than anyone, so if you feel something is off, say something. If a health care provider doesn’t listen at first, keep talking. I knew my pain wasn’t normal. I knew I had to say something. I did, and it led to a diagnosis and a journey that has led me to be more than just a patient. I am on a journey of learning about my disease and helping others.
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