Every day, all throughout the day, Cynthia Covert has to think about how much pain any given activity will cause her. “Is it worth it? What can I do to minimize the pain?” she must ask herself before performing activities most of us take for granted.
That’s because she lives with psoriatic arthritis (PsA), a chronic inflammatory autoimmune disease that can be painful and can cause joint pain, swelling, stiffness diminished range of motion, nail changes, rashes and fatigue.
“Psoriatic arthritis has impacted my daily life significantly,” said Covert, a disability advocate in California who was diagnosed with psoriasis in 2001 and PsA in 2003. “[It’s] more than a bit of arthritis and a rash.”
Symptoms of PsA can be different in each person and can range from mild to severe, including periods of flare-ups and remission.
While PsA and the skin disease psoriasis can be connected, people can get PsA without having the skin condition and vice versa. Eighty-five percent of people who develop PsA have psoriasis and up to 30% of people with psoriasis develop PsA.
And, although women and men are equally diagnosed with PsA — often between the ages of 30-55 — the disease can affect them differently. A study at Johns Hopkins University found that women are less likely to experience remission and some treatments may not be as effective for them. In a 2018 interview about the study, Dr. Ana-Maria Orbai, the lead researcher, noted that one possibility for this may be “different social responsibilities or expectations for women and men that might affect how they experience this disease.”
Dr. Cynthia Manos, a rheumatologist and assistant professor at the Emory University School of Medicine, reported that early diagnosis is critical in disease management and preventing joint damage, but getting diagnosed can sometimes be challenging.
“Some medical providers may not know the key signs to look for — such as subtle swelling, warming in the joints or a decreased range of motion — when performing a joint exam.” Adding to the difficulty of making a diagnosis, there isn’t one definitive test to diagnose PsA.
Initial symptoms can be different for each person and are not always specific, but a physical exam; testing for signs of inflammation in the blood; and imaging studies, such as X-ray, ultrasound or MRI, can be used to make a diagnosis, Manos explained.
There are different medications available to treat PsA and sometimes patients need to work with their healthcare provider (HCP) to try different options to see what works for them. Staying active can also help reduce pain from PsA. Manos suggested trying low-impact activities such as swimming or yoga and noted that biofeedback, a technique that uses electrical sensors on different parts of the body to treat chronic pain and other medical conditions, may be helpful in managing pain from PsA.
Like other chronic pain conditions, PsA can affect your ability to work, socialize, sleep and be intimate, which can lead to increased depression, anxiety and stress — often beginning during the diagnosis process.
Cindy Perlin, a clinical social worker in New York who specializes in treating chronic pain patients, indicated that it’s not just the symptoms of the disease itself that can cause distress. The process of going through multiple tests and seeing different doctors can be overwhelming. “Getting an accurate diagnosis can be a daunting process for some and can increase anxiety and stress.”
Covert said she experienced this frustration firsthand when a doctor she went to didn’t take her symptoms seriously. She was eventually diagnosed when her primary doctor referred her to a rheumatologist for a different medical issue. “I happened to wear open-toed shoes to my appointment, and the doctor noticed my toenails (some were pitted and lifted from the nail bed) and asked why I didn’t tell him that I had PsA. I told him that I was diagnosed with psoriasis two years earlier and had no idea what PsA was. After running a few more tests, he diagnosed me with psoriatic arthritis.”
Once she was diagnosed, having PsA continued to affect Covert’s mental health, and it increased her anxiety about the future and her ability to do certain everyday tasks, such as going to the grocery store. Before she goes, those questions most of us never ask ourselves must be considered. She wonders if she’ll have enough energy to shop or if she’ll be able to stand in a long checkout line.
Reduced ability to socialize and participate in different activities can lead to isolation. “The inability to do things you once could can be isolating and pain can also be invisible to others,” Perlin said. “Sometimes other people may not really understand this condition. They may think it has been long enough, why aren’t you better? But when someone tells you that they are in pain — believe them.”
Max Stroud, a 48-year-old software consultant in Illinois who was diagnosed with PsA in 2012, said she likes to stay as active as possible but has had to make some changes in her activities.
“Recognizing when I could not keep doing some of the things I once did, such as being a Girl Scout leader, was definitely a readjustment,” Stroud said.
She added, “I have modified hobbies/interests to things where if I am feeling up to it, I can do it (cooking, photography), but I can also avoid it if I am not well enough.”
Several studies over the past 40 years have also found that sexual difficulties were reported in PsA patients, sometimes in as many as 70% of them. “When patients are experiencing a PsA flare-up, they may not feel comfortable having sex and sex can be painful,” Manos said.
Covert said that PsA has also had an effect on her sexual health. “Flares are unpredictable. Some last a few hours, some for days, while others may linger for weeks, months, or even years. The last thing I want to do when my body is throbbing in pain is to have sex with my husband.”
Covert suggested some strategies to handle the impact of PsA on sexual health and relationships — talk with your partner, try different positions and different forms of intimacy to find what works best — and advised against comparing yourself to others. “Do not compare your sex life with other couples or what you see in movies or read in novels.”
Despite the challenges of PsA, having the right support can make a difference. Covert recommended therapy, creating a realistic schedule, setting boundaries with unsupportive people and connecting with others who also have PsA. “Having others who ‘get it’ in your life helps a lot,” Covert said.
Stroud also added that it’s important to have a doctor who listens to you. “Ask a lot of questions and find a provider who does not rush you.”
This resource was created with support from Bristol Myers Squibb.