Living with Psoriatic and Ankylosing Spondylitis is Challenging

Living with psoriatic and ankylosing spondylitis is a daily challenge that affects every part of my routine. From morning stiffness to evening discomfort, these conditions shape how I move, rest, and manage pain. Here’s a glimpse into what life with spondylitis looks like for me.

Managing life with psoriatic and ankylosing spondylitis

What is spondylitis?

Spondylitis is an inflammation of the spine. My spondylitis is caused by arthritis and psoriasis.

Having spondylitis is very painful. My cervical, lumbar spine, and sacroiliac joints are affected. This means that my neck, lower back, and pelvis are all impacted.

How does it affect me?

Spondylitis causes swelling and inflammation in these areas. It also causes narrowing of the joints between the vertebrae in my spine.

Over time, it can lead to the discs—those pads between each vertebra—wearing away or bulging. When that happens, the bones start rubbing against each other, leaving me stiff and in pain.

Who diagnosed me?

My rheumatologist diagnosed me by identifying changes in my spine through X-rays and an MRI. I wake up each morning with a stiff back and limited movement.

Getting up is slow, and I need to steady myself. Over the years, I’ve developed a morning stretching routine to ease the pain.

Mornings with Spondylitis

My morning routine can take anywhere from 30 minutes to two hours, depending on the stiffness and pain. When I have plans, I wake up extra early to ensure I’m ready on time.

Getting dressed is now a careful process. I usually sit down to get ready because standing and balancing on one leg to put on underwear, pants, or shorts is no longer an option—I tend to tip over. Grace is no longer on my side in this department.

More Flexible Afternoons

As the day progresses, the stiffness decreases, but the pain does not. While the pain might lessen, it never truly disappears. Unfortunately, the damage to my spine is irreversible. My doctor helps manage my pain through a combination of exercise and medication.

I do my best to avoid taking pain meds, but occasionally, I’ll take one Tylenol. Since having a heart stent placed, one tablet relaxes me, but two tablets make me sleepy.

Evening Symptoms

As the day turns into night, I often develop a fever. My medical team explained that this is a side effect of the inflammation in my body and my psoriasis. Plaque psoriasis traps heat in the affected areas, and as the evening cools the rest of my skin, the temperature disparity leads to a low-grade fever. Not everyone experiences this, but it’s a common pattern for me.

Before bed, my toes and fingers swell, resembling tiny sausages in a jar. This swelling makes them sore, and some of my joints also become tender. I often feel pain where tendons attach to the joints—another aspect of spondylitis.

Bedtime Medications for Rest

To sleep comfortably, I take my nighttime medications, which include pain relief, a muscle relaxer, and anxiety medication. Without these, I would lie awake for hours. The pain and stiffness, which worsen from staying still, keep me from sleeping.

Occasionally, I experience hypersensitivity in my neck due to disc compression, resulting in numbness or tingling. I never know which sensation to expect, but muscle relaxers help calm it down. When my medications work as intended, I can enjoy a restful night’s sleep.

The Role of Weather

This is what a typical day looks like for me, but weather plays a significant role in my symptoms. Rainy or snowy days bring added complications, and humidity has its own effects. Those stories, however, are for another day.