Woes of PsA: Finding the Right Diagnosis

Like many people with psoriatic arthritis, I experienced symptoms for quite a few years before landing myself a diagnosis. I wrote off the aches in the morning. I blamed the fatigue on being a mom to 3 young children. I thought the hearing loss was from excess fluid from an 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.

Could it really be something?

I eventually decided to prioritize my health and made time to see my primary care doctor. I explained my symptoms. I assured myself that she would agree that it was nothing - and then 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 an appointment with a rheumatologist rolled around, I was 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 this time. My mind won the battle, convincing myself that maybe it really was all in my head.

Documenting a month of pain

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 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. Instead, it was filed right in the garbage can.

While that particular doctor didn’t work out, my documentation did finally convince me that something was seriously wrong. That was the true first step to my psoriatic arthritis diagnosis. I again felt dismissed and even angry.

Tips as you navigate your own journey.

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 dama and some pain. So here are a few lessons learned...

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.