There has to be a better diagnosis protocol

I had psoriasis on my elbows, ankles, and knees my whole life. Not big patches, but they were there. I started hurting in my mid 20’s (25 tops) and I finally had a diagnosis when I turned 43. It started only in my hands, but I knew something was wrong. I went to the doctor and they did x-rays. They agreed I had arthritis and tested me for rheumatoid factor. Of course, it was negative and they didn’t blink twice, just to let it go. So I had no choice and I continued through life with hand pain, swelling, and no reason why. Since it stayed in my hands, I just figured this was my life.

Dismissive doctors

I mean doctors did their due diligence, right? Multiple doctor visits saying I’m just so tired, my hands hurt, they are red, inflamed and feel like they are on fire. I switched doctors several times. No more X-rays, we're done. I developed psoriasis on my hands and they said that’s why they hurt. My days were filled with covering my hands with greasy salves, socks, and gloves while I slept, avoiding paper like it carried the plague and learning that 1) complaining wasn’t going to fix it 2) nobody wanted to hear me complain 3) the ointments were pointless.

Starting to advocate more for my health

So, I started to look into things on my own. Brought it to the attention of my dermatologist and received more useless ointments. I talked to my PCP and he requested a referral to a rheumatologist and they would not see me. Finally, one day I woke up and my hands were not movable. I couldn’t walk and I was terrified.

I went to my PCP and they gave me steroids to get the inflammation under control. They started me on methotrexate. I found a rheumatologist and they accepted the referral. I had to wait 4 months and 2 weeks before the appointment. They called and said the physician would be leaving the practice and they couldn’t fit me in with their other doctor ever. Back to square one.

An official psoriatic arthritis diagnosis

Finally, I decided to go 3 hours away to see a rheumatologist that was in the network and finally, I had the official diagnosis. With damage in my ankles, knees, hands, and cervical neck. I know it’s hard to diagnose, as there is no simple test. But over 15 years is a long time to go unheard, over 15 years is a long time. To think this is my life, over 15 years of pain.

Wishing for a better PsA diagnostic protocol

I realize I could have been more diligent, but when physicians just look at you like you are being dramatic, like you are just someone who likes to complain, telling you your depression is causing your fatigue. It’s scary to think of how many people go so long undiagnosed. And I know it wasn’t talked about in commercials like it is now. I just hope researchers will continue to find a more efficient diagnostic tool to help them in the future.

My PsA pain was real

On the upside, Humira helps me a lot. I still have flares, I looked up and researched foods that might trigger inflammation. It’s not perfect, but at least it’s managed for the most part and I know my pain was real and I found the reason for my pain.

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