A person in a boat navigates a stormy sea

Riding It Out With Psoriatic Arthritis

Psoriasis has been a part of my life since I was 5 years old. Despite the onset of symptoms at age 25, I didn’t get an official diagnosis of psoriatic arthritis until I was 50.

I had all the symptoms including painful knees, shoulders, wrists, fingers, toes, and hips. My knees and fingers being the most affected. I have a slight curve in my fingers as of today.

Navigating PsA before and after diagnosis

When I complained about joint pain and swelling all those years ago, no one knew what was wrong with me. They finally did some tests - and boom, I had a diagnosis and a name for my disease. This had been ailing me for twenty-five years. I remember feeling sad. Even though I had known what I had for 25 years, I simply wasn’t believed by the medical community.

There is no cure for PsA. I started out taking medication to control symptoms to prevent joints damage as the condition can be disabling if not treated. I was put on nonsteroidal anti-inflammatory drugs (NSAIDs), that didn't work. The doctors switched to disease-modifying antirheumatic drugs (DMARDs), which helped for a while, but eventually stop working.

This disease has been a wild ride which I sometimes find challenging to navigate through. I'm grateful to my family, friends, especially my colleagues. I have been allowed to work from home for years now because there are certain things I can no longer do.

With PsA every day is different

There are some days I wake up fine. Then there are days my fingers are so swollen to the point where I can't hold a pen to write or struggle to get out of bed. The most debilitating aspect of this disease is losing my train of thought in the middle of a sentence, which makes me feel highly self-conscious.

At first, I thought this was all in my head, but it is all so real. There can be a task I have done for 30 years and can forget in a second how to do it. I'm concerned that people will interpret some of my reactions as being rude.

Most people will never understand my lack of concentration and fatigue is psoriatic brain fog. Well, this is what I call it. This has harmed my self-esteem. I have an understanding community and coworkers with whom I have explained my situation. Everyone has been so patient with me.

Moving forward in this relentless journey

I'm haunted by fatigue and tiredness most of the time, which I despise. Everything causes fatigue, one minute I’m fine, and the next minute or so, I'm completely exhausted. Flare-up days are the worst days of my life, and you never know when they will strike.

Even with pain medications, the pain during a flare is constant and unrelenting. Sleeping through the night becomes impossible, and I become trapped in a cycle of exhaustion and depression. The constant pain associated with flare-ups makes me feel isolated and helpless at times.

No one can understand my anguish unless you've been through it yourself. I thank God that I have mastered a method of getting through these difficult times by allowing plenty of time for rest and not pushing myself to the breaking point.

If you are at your breaking point as most of us are at times, join a support group or talk to someone. Though not everyone in your life will understand, there are people out there that do. You don't need to be alone on this journey.

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