PsA and Finding the Right Diagnosis
Like many people diagnosed with psoriatic arthritis, I was experiencing symptoms for a few years before landing on the right diagnosis. I wrote off the aches in the morning for getting up to feed the baby in the middle of the night. I blamed the fatigue on being a mom to 3 young children. I thought the hearing loss was from leftover fluid from routine ear infection. My body screamed that something was wrong while my mind worked overtime to rationalize each new symptom as I convinced myself “it was nothing.”
I eventually made time to see my primary care doctor. I hesitantly explained my symptoms, assuring myself that she would agree that it was nothing more than simple aging. She didn’t. She ordered an extensive list of labs and gave me a referral for rheumatology. By this time, denial and I had become fast friends.
By the time my appointment with my rheumatologist rolled around, I was even worse off. Despite growing fatigue, achy joints, sore muscles, and a questionable rash, my labs all came back “normal.” The rheumatologist briefly examined me and told me to come back in a month if I still wasn’t any better. I felt equal parts dismissed and also relieved. My mind won the battle this time, convincing myself that maybe it really was all in my head.
After a long discussion with my husband, he convinced me to keep track of my symptoms, take pictures of odd rashes and swelling, and document everything. I spent the following month taking pictures and dating each new symptom. With my printout in hand, I headed back for my follow up appointment. The doctor quickly scanned through the pages and told me there was nothing she could do for me without any further evidence. As she handed back my tedious month of documentation, I asked her to keep it and put it in my file, and left the office near tears. I again felt dismissed and even angry. I was so upset I forgot my jacket. As I returned to the room to get it, I was heartbroken to find my printout, not placed safely in my file, rather, it was filed right in the garbage can.
Getting the right diagnosis
While that particular doctor didn’t work out, my documentation did finally convince myself-body, mind, and soul-that something was seriously wrong. That was the true first step to my psoriatic arthritis diagnosis. Once I was able to get an appointment for a second opinion, significant damage had already been done. I beat myself up for a bit for waiting so long to take care of myself. If only I had been more proactive. If only I had listened to my body. If only I had trusted myself, maybe I could have saved myself some of the damage, some of the pain. If only…
Important Lessons to Learn
Listen to your body
You are the master of your domain. Pay attention to what your body is telling you, if something is off or feels wrong, it likely is. Daily life can be busy and it is very often that we put the needs of others before our own. But if you take the time and listen, you won’t regret it.
Be your own advocate
Believe it or not, doctors are human too. They come with their own opinions and experiences that impact how they do their very demanding job. It may sound silly, but only you know you best. Ask questions, be informed, and if you don’t feel comfortable with the answers then keep looking.
Find the right rheumatologist
Just like there is no one size fits all diet, there is no one size fits all rheumatologist. You should feel comfortable and confident talking with your rheumatologist. You should be able to be honest about your symptoms, fears, and any concerns you may have.
Document, document, document
Yes, this requires mentioning more than once. Write down your symptoms, take pictures, date everything. Sometimes, seeing things in black and white make them much easier to make sense of and can be a valuable aid in identifying the right diagnosis and treatment plan. If you don’t have time to write every little thing down, don’t worry, there are quite a few quality apps designed to make it quick and simple to track any symptom you may experience.
If you take the time to listen to your body, find a good rheumatologist, and be informed you will be on the path with to finding the right plan to treat your psoriatic arthritis.
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