What Psoriatic Arthritis Really Feels Like
Psoriatic arthritis joint pain, stiffness, and fatigue can be devastating — and hard to describe. Here’s the truth that often goes unspoken.
What does?psoriatic arthritis (PsA)?feel like? It’s a question only someone living with this autoimmune disease can really answer. Just ask Leanne Donaldson.
“Some days, I feel like no one has ever heard of psoriatic arthritis,” says Donaldson, 44, a writer and mom in Hebron, Kentucky, who documents her struggles with PsA on her blog, Smiles and Sundays. “Rheumatoid arthritis, yes. But psoriatic arthritis, not so much.”
The Joint Pain and Overall Discomfort Are Exhausting
The Arthritis Foundation lists joint pain, stiffness, skin rashes, fatigue, nail changes, decreased range of motion, and swelling as some of the symptoms of psoriatic arthritis. When you combine these problems, the results can be debilitating.
“It’s like feeling your bones shatter and crumble. It’s like having flu-related body aches that never go away. It’s exhausting,” says Cynthia Covert, 53, a writer in Riverside, California, who blogs as The Disabled Diva. “When my joints swell, it feels like someone has wedged a screwdriver into them and is trying to pry my joints out. Swelling around the spine sends nerve pain down to my toes and up through my skull.”
Donaldson describes the joint pain as “my body is eating itself.” Then there’s the overwhelming tired feeling associated with the disease. “Some days, the fatigue is as bad or worse than the pain,” she says.
In a?study published in Advances in Dermatology and Allergology?in March 2020, researchers found that 28 percent of people with psoriatic arthritis reported severe fatigue. Fatigue was significantly worse in people who had psoriatic arthritis than in those with psoriasis alone.
Unpredictable Flares Can Make Planning Hard
One of the biggest challenges facing those with psoriatic arthritis is the unpredictability of flare-ups. These unwelcome episodes can strike at any time, affecting both your personal and professional life.
In a study presented at the 2018 Annual Perspectives in Rheumatic Diseases Conference, researchers found about 80 percent of participants with psoriatic arthritis said they were partially or totally unemployed because of their condition.
More than half of respondents reported having difficulty spending time with friends.
“I never know, day to day, what I’m going to feel like or what my body will be able to do,” Donaldson says.
The erratic nature of the disease can make planning problematic.
“The hardest part of living with this disease is the unpredictability,” Covert agrees. “How many naps will I need? Will I even need a nap, or will I be able to get out of bed? Will I be able to walk today? And if so, how long and how far?”
Misdiagnosis Is a Common Problem
In a study published in June 2018 in Annals of the Rheumatic Diseases, investigators found that 96 percent of people who were diagnosed with psoriatic arthritis received at least one prior misdiagnosis.
According to a?study published in BMC Rheumatology in January 2020, the most common misdiagnoses that people received prior to a correct psoriatic arthritis diagnosis were:
- Psychosomatic disorder
- Anxiety or depression
- Orthopedic problems
In addition to joint pain, stiffness, and fatigue, hallmark symptoms of psoriatic arthritis include:
- Skin rashes Most people with psoriatic arthritis have skin symptoms before joint symptoms, but this isn’t always the case.
- Dactylitis This sausage-like swelling that can happen on all parts of the fingers and toes is often a telltale symptom.
- Nail changes Many people with psoriatic arthritis have nail psoriasis, which can mean nails become pitted or look like they’re infected.
- Eye issues?Psoriatic arthritis can cause inflammation of the eyes, which can trigger redness, irritation, and vision problems.
Treatments and Lifestyle Changes Can Ease PsA Symptoms
If you experience skin symptoms along with joint pain, it’s a good idea to ask your doctor about psoriatic arthritis. This is especially important if you already have psoriasis, because up to 30 percent of patients with this autoimmune condition will develop psoriatic arthritis, too.
“Patients with psoriasis should be aware of the connection between psoriasis and arthritis,” says Lihi Eder, MD, PhD, a rheumatologist at the University of Toronto and the Women’s College Research Institute. “Those with psoriasis experiencing joint symptoms should consult their primary care physician or dermatologist, who can determine the need for an assessment by a rheumatologist.”
Psoriatic arthritis can cause irreversible joint damage, but the good news is that certain treatments can prevent or delay permanent changes, manage symptoms, and improve quality of life.
Guidelines from the American College of Rheumatology and National Psoriasis Foundation?suggest that you might be able to improve your psoriatic arthritis symptoms by: