The Slow Evolution of Psoriatic Disease

I am a retired pediatric cardiologist who has struggled with psoriatic arthritis for several years. The majority of my pain is related to enthesitis, although my joints are slowly becoming involved in the process. The condition has affected my ability to work and has broadened my understanding of what it is like to have chronic disease.

The initial signs

I first remember waking up with pain when I was 30. I was a pediatric cardiology fellow at the Mayo Clinic in Rochester, MN. I had early mornings in the cath lab and wore a heavy leaded apron to protect me from the radiation. I recall being so sore and fatigued at the end of the day and thought that everyone must feel this way. My approach to coping was to exercise more and gain muscle strength. The difficulty was, I hated to exercise because I generally felt unwell afterward. I remember asking my husband if it was normal for joints and tendons, not muscles, to hurt after exercise.

Despite being a physician, I couldn’t make sense of my symptoms. My sister had been diagnosed with an autoimmune arthritis in her 20’s and it had been very destructive to her joints. I never quite understood the pain she talked about, but began to wonder if my daily discomfort might be related. It was a few years into practice that I developed painful trigger fingers and had 5 tendon releases. I was then plagued by a right knee effusion that cleared up after steroid injections. Then came the plantar fasciitis, first the right foot and then the left. Podiatry visits were frequent especially after I developed a partial tear in the right fascia. I recall telling the podiatrist it felt like I was giving birth out the bottom of my foot.

Developing other health conditions

After my third child, I began to notice more fatigue and despite being of normal body size and habits, I developed sleep apnea and hypertension. Once I was treated for the sleep apnea, my fatigue improved, but did not resolve completely. I also began to notice some days my fingers were puffy and stiff. In the back of my mind, I knew I was probably developing something like my sister had, but nothing was overt enough for me to pursue further diagnosis or treatment.

Then I recall developing some dry patches on my knees and elbows in my mid-40's. Steroid creams and vitamin D settled this a bit, but it became more evident to me I had psoriasis. March of 2020 is when the sacroiliitis developed and I believe the stress of practicing medicine during the pandemic is what tipped me over into my first full-blown flare. I recall having a bit of a sore back, but after helping my daughter move some furniture I landed in bed for 4 days. We wondered if it might be a disc issue and I was given a course of steroids to settle the pain, which did not completely resolve, but I was able to return to work. In the coming weeks, other joints became painful.

Getting a psoriatic disease diagnosis

At first my primary physician thought I might have fibromyalgia, but the more tender the joints and tendons became the more apparent it was I had some sort of arthritis going on. Pain, fatigue, puffy fingers, back stiffness and disrupted sleep became my norm. I was told I could see a rheumatologist in 4 months and I recall feeling hopeless and thinking I couldn’t possibly wait that long for help. Thankfully, an appointment opened up in a couple of weeks and that is when my fear was confirmed. I had psoriasis with psoriatic arthritis. I was initially started on methotrexate, then Humira was added in, and I finally switched to Cosentyx, which has helped my enthesitis the most.

What became clear to me about my PsA is that it had an insidious onset over many years with different manifestations. The tendon component was a huge part and for some reason it was tolerable enough at first that I just continued to power through life as a busy mom and physician. During the subclinical part of the timeline, I was high enough functioning that rest, Tylenol, and ibuprofen could hold me steady. Once I had the full-blown flare with dactylitis and enthesitis, I did feel control over my life slipping.

Changing my outlook on life with PsA

I had to learn how to slow myself down, reduce the number of tasks I did in a day or week and I found myself having to limit my activity. It took me a couple of years to wrap my mind around this new pace. My new mantra became "Do one big thing a day." Most of the time this meant go to work for the day and then come home depleted of energy with an empty tank. Emotions about this came and went. Sometimes I was very frustrated and other times too fatigued to care.

The impact of PsA on my career

I was able to maintain my clinical practice for 4 years after diagnosis, but took some extended time to recovery after another flare where I began to notice cognitive overwhelm when the pain was bad. When the discomfort was bad I simply could not think as clearly as I used to. The demands of overnight call and long work days did contribute to worsening of my symptoms as these impaired my ability to rest and repair myself. Ultimately, I had to shift my mindset to thinking about how to best preserve my wellbeing for the long term and that has meant early retirement.

Having a deeper appreciation for people with chronic health conditions

I often wonder if I had been more aware of the messages my body was giving me in the early years of symptoms if I would be in a different place today, in other words, more high-functioning still. I am not one to linger in regret and know I can't rewrite what chapters of my life I have completed. I do have a deeper appreciation of anyone who lives with chronic pain and my compassion for those who need assistance due to disability has grown. For now, I will step up and do what I can to continue to care for my family well, knowing that over time this painful malady will likely slow me down more. All hope is never lost.