If you research psoriatic arthritis online, you’ll likely read about how it’s a type of arthritis that occurs in people with psoriasis. You’ll see lists of symptoms of psoriatic arthritis include psoriasis skin plaques and rashes as well as joint pain, swelling, and stiffness.
But real life can be very different than a Google search result.
No one knows this better than psoriatic arthritis (PsA) patient Frances Downey, 55. The Virginia resident was diagnosed with psoriatic arthritis seven years ago after experiencing debilitating, excruciating foot pain — without accompanying joint pain — as her primary symptom.
It took Downey 18 months and visits with nine different doctors to get her psoriatic arthritis diagnosis, largely because foot pain was her main complaint as opposed to more “typical” PsA symptoms.
“It’s my mission and passion to help raise awareness,” Frances says of her less-common PsA presentation.
Here’s how Frances got to the bottom of her symptoms and what she wants other people living with pain to know about advocating for their health, improving communication with their doctor, and more.
From Stiff Feet to Awful Pain
Frances vividly remembers the first time she woke up with unusually stiff feet, almost 10 years ago. “I was 46 and I remember thinking, ‘well, what’s up with this?’ I thought it was related to getting older,” she says. She began to wake up with stiff feet routinely every morning and started getting used to it.
Then one day the everyday stiffness in her right foot turned excruciating. Her foot throbbed along the bottom. “I hobbled to the podiatrist and got an emergency appointment. He said it was plantar fasciitis,” Frances recalls. That doctor gave her steroid shots, but she says they didn’t help.
Plantar fasciitis happens when there is inflammation of the plantar fascia, a band of tissue that runs along the bottom of your foot and connects your heel bone to your toes.
The foot pain continued to get worse, then spread to her left foot. Frances saw other podiatrists for second opinions and started physical therapy, but nothing eased the foot pain.
“I didn’t have any other symptoms. I didn’t have any swollen joints or pain in my joints or anything,” says Frances — which is why she never thought to see anyone aside from foot doctors. “I think that all the podiatrists did the best they could and [the psoriatic arthritis] just masked itself.”
‘It Was a Very Humbling Experience’
It got to the point that Frances couldn’t walk anywhere without terrible pain. She requested a handicap placard because merely walking from her car to the drugstore to pick up a prescription was unbearable. “I was just getting by,” Frances says of her life back then. She spent most days just trying to get to and from her job at the Federal Communications Commission and get her work done.
She painfully recalls one two-week period where her foot pain was so bad she couldn’t get out of bed. “I got a Home Depot paint bucket, filled it with ice and water, and was icing my feet in ice water on and off all day for two weeks,” Frances says. “I had to walk on my tippy toes just to get to the bathroom and the kitchen. That was at its worst.”
When she eventually got to another podiatrist’s office, it was the last straw. “I’m not a crier, but I broke down and started crying. I said, ‘I can’t take this pain anymore,’” Frances says. The podiatrist acknowledged that she should not be having this much pain with only plantar fasciitis and sent her to a pain management specialist for more testing.
Psoriasis: The Subtle Clue That Was Being Ignored
The pain management doctor helped crack Frances’s case during that first visit.
“I just remember feeling such relief because when he walked out of the room he looked back at me and said, ‘I will get you a diagnosis. I won’t stop until I get you diagnosed,’” says Frances. “I just wanted an answer of what was wrong. At that point, I was just so desperate to figure out what was going on.”
The pain management doctor knew there was a red flag when a blood test for systemic (all-over) inflammation came back positive. He referred Frances to a rheumatologist for more testing.
At that point, she started to suspect she might have psoriatic arthritis, which she’d never heard of until that moment.
Frances calls that realization “another ridiculous thing — because I’ve had psoriasis since I was 21. And none of my GPs or dermatologists in over 30 years ever mentioned psoriatic arthritis to me which, I think, is a shame.”
After a physical exam and more bloodwork, the rheumatologist confirmed Frances’s psoriatic arthritis diagnosis. “He spent probably an hour and a half with me,” she says. “He was very thorough, he checked every single point in my body and every vertebrae, everything.” Her blood tests were negative for antibodies for rheumatoid arthritis and lupus, which her sister has. The psoriasis was a big clue, as was a lack of painful joints.
A Less Typical Psoriatic Arthritis Presentation
Around 70 percent of people with psoriatic arthritis develop psoriasis first; the other 30 percent of the time, the arthritis and skin symptoms occur at the same time, people have psoriasis but don’t realize it, or the psoriasis may develop later on. Some people can develop psoriatic arthritis without having psoriasis.
In Frances’s case, her psoriasis symptoms were so mild that she wasn’t really treating them. She would get some rough patches of skin on her elbows and knees and sometimes flare-ups on her scalp. But she used topical treatments from her dermatologist and never really thought of herself as a “psoriasis patient.”
“My psoriasis was not really a big deal for me in my life. It was not causing really any problems,” Frances says.
It turns out that there’s little correlation between the severity of psoriasis plaques and the odds of developing PsA, and vice versa. You can have mild psoriasis and severe psoriatic arthritis or mild psoriatic arthritis and severe psoriasis. So it’s likely that other patients also overlook PsA as a potential diagnosis because their psoriasis isn’t front and center in their mind.
Also important: The patterns of joint pain and other “typical” arthritis symptoms can vary widely in psoriatic arthritis. Some research indicates that people with psoriatic arthritis may be less tender or in pain on a physical exam than people with other kinds of arthritis, such as rheumatoid arthritis. PsA patients can have joint deformity without having significant pain.
People may also not know much about enthesitis, or inflammation at places where ligaments and tendons attach to bone. This is common in people with psoriatic arthritis: One 2016 study found that 35 percent of people with psoriatic arthritis experienced enthesitis. Common sites include the Achilles tendons and the plantar fascia — both of which can cause foot pain just like Frances’s.
Fatigue: The Worst PsA Symptom
Today, seven years after getting diagnosed with psoriatic arthritis, Frances is doing OK. Not great, but managing. She’s had trial and error of many different types of medications, including multiple biologics, as well as two hip replacements. Since starting medication, her foot pain has gotten much better, though she sometimes gets swelling in her fingers and more often in her toes — another common PsA symptom called dactylitis. Her psoriasis is basically nonexistent.
And luckily, pain continues to not be an issue for her. “I rarely have pain. It’s weird. I don’t even take ibuprofen,” she says.
Fatigue is the most problematic symptom Frances copes with on a regular basis.
“Fatigue is always my main problem,” she says. “I’ve fired like four or five doctors until I got to my rheumatologist who would actually accept that my debilitating fatigue was a symptom of psoriatic arthritis.”
After reading advice about how to talk to the doctor about fatigue, Frances decided to start documenting how fatigue was affecting her social life, work, housework, running errands, and more. When she shared her notes with her doctor, it made him realize, “This is really bad for her,” Frances recalls.
That led to her getting a referral to a neurologist, who prescribes narcolepsy medication to help manage fatigue. Frances continues to take it along with her biologic and occasional prednisone.
Frances’s Advice for Fellow Patients
Frances, who recently joined Twitter to raise her voice as a psoriatic arthritis patient advocate, wants to help other people avoid the same diagnosis delays that she did, especially psoriasis patients who might not know about psoriatic arthritis or anyone with debilitating foot pain that’s not getting better.
Here are three things she wants other patients to know about her experience getting diagnosed with and living with PsA.
1. If you have psoriasis, learn about PsA
“I wish that when I was diagnosed with psoriasis, I would have researched the symptoms and learned more about my chances of getting psoriatic arthritis. Or even just learning that there was such a thing as psoriatic arthritis,” says Frances. “Don’t be paranoid, but be knowledgeable. Early detection can equal a better outcome and a better quality of life.”
In hindsight, Frances notes, if she knew foot pain were a symptom of psoriatic arthritis AND if she knew that psoriatic arthritis can occur in people who have psoriasis — even mild cases — she would likely have gotten diagnosed sooner.
Frances hopes to raise awareness of foot pain as an arthritis symptom. “If everyone is more aware, [podiatrists] could be among the first to diagnose PsA before there’s joint damage. Wouldn’t that be great?”
2. Reach out and get support
Arthritis can be a very isolating disease, and people don’t really think about that, Frances says. This makes it critical to get support, help, and advice from others. “Get support from whoever you can. Your friend, an online support group, a psychologist, a therapist,” she says. “I’ve gone to a therapist to help me cope with manage the stress of dealing with PsA while working full time and trying to have some sort of social life and taking care of everyday tasks.”
3. Don’t hesitate to fire your doctor
“If your doctor isn’t listening to you and your symptoms and helping you get an understanding of your goals for a better quality of life, then keep searching for a new rheumatologist,” says Frances. Educate yourself about your disease, your symptoms, and current and new treatment options so you can talk about them with your doctor.
“I was lucky to find a doctor who says, ‘We’re a team,’” says Frances. “That’s what we all need to look for.”
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