Psoriatic arthritis looks different for each of the 1.5 million Americans who have the disease — but speak to people who are living with the autoimmune condition, and you’ll hear a common refrain: I knew something wasn’t right.
Emily Hertzberg, a 40-year-old art teacher in New York, says she was always very athletic. She played soccer as a kid and rugby in college. “I was just in really great shape,” she says of her young adulthood. “I was taking care of myself, working out all the time.”
And then, soon after she graduated from college, despite all her healthy habits, it began to feel like her body had betrayed her. “I felt almost as if I had gotten hit by a bus or something,” Hertzberg says. “It was just like my entire body, head-to-toe, hurt. And I woke up one day and I was like, ‘What is going on? This is not normal.’”
At 47 years old, Kristin Salazar (now 51), a blogger from California, similarly felt in her bones that something was wrong. “I was living a very healthy and active lifestyle and it all came crashing down when I could barely get out of bed in the mornings,” she says. “Having been diagnosed with lupus years prior, I knew something different was happening to my body.”
For both women — and so many others — this gut feeling kicked off a winding road to diagnosis and treatment: Research shows that it often takes years for patients to learn they have psoriatic arthritis.
“The disease can present very heterogeneously — not everyone who walks in looks exactly the same, tells the exact same story. So it can make it hard to diagnose,” says Rebecca Haberman, MD, associate director of the NYU Langone’s Psoriatic Arthritis Center. ”This disease has all of these different domains to it,” she says. It impacts your skin, your joints, your enthesis (or the areas where your ligaments and tendons connect to bone), and your spine. “And people who have psoriatic arthritis can have [symptoms in] a couple of them, or all of them. Some are terrible, some are not as bad.”
What’s more, Dr. Haberman says it’s not uncommon for some symptoms to go unnoticed — or be ignored or misattributed — for a long time. “Some of the initial symptoms are a little bit of joint pain, a little bit of fatigue; that can often be written off not only by the patients themselves, but by their physicians as well,” she says. “So it’s important, especially if you have skin psoriasis and you start feeling this way, to get yourself to a rheumatologist.”
“I say to people all the time, you have to be your own health advocate,” adds Hertzberg. And self-advocacy starts with education. By learning about the symptoms associated with psoriatic arthritis, you’ll be able to have a more informed conversation with your doctor about what you’re experiencing, which could lead you to a quicker course of treatment.
Psoriasis symptoms of the skin and nails
Many people are diagnosed with psoriasis before they have psoriatic arthritis, and according to the National Psoriasis Foundation, about 30 percent of people with psoriasis will develop psoriatic arthritis at some point in their life.
This was the case for Hertzberg, who had psoriasis plaques (rough, scaly patches) on her scalp as a child. “The psoriasis really didn’t fully bloom, I would say, all over my body, until my twenties,” she says, around the same time her other psoriatic arthritis symptoms made themselves known. “That’s when it started popping up everywhere…on my legs — front and back and the sides. It also popped up on my back. I had it behind my ears. I had it in my ears.”
Prior experience with or current presentation of psoriasis is therefore at the top of the list of symptoms doctors screen for when diagnosing psoriatic arthritis. “The first thing we always ask about is the skin,” says Dr. Haberman. “Do they have skin psoriasis? Where is it located? Is it on the scalp or the nails?”
As Dr. Haberman indicates, beyond psoriasis plaques, patients with psoriatic arthritis may see changes in their nails. According to the Cleveland Clinic, common nail symptoms include pitting (or small indentations in the nail plate), discoloration, thickening or ridges appearing in the nails, bruising, or fungal infections.
Chronic illness blogger Cynthia Covert, who was diagnosed with psoriasis and sent on her way with a cream to treat the rash two years before receiving her psoriatic arthritis diagnosis, says that her nails were the giveaway when she went to a rheumatologist seeking treatment for what she believed to be fibromyalgia. “[My doctor] looked at my feet and he looked up to me and said, ‘Why didn’t you tell me that you have psoriatic arthritis? Why isn’t it on your new patient sheet?’” says Covert. “And I said, ‘I have no idea what you’re talking about.’”
Joint pain or stiffness
Psoriatic arthritis is an autoimmune disease, or a disease in which the immune system goes into hyperdrive, attacking not only harmful or foreign cells within the body, but also healthy cells. When this happens, it can cause painful inflammation in the joints. And, according to rheumatologist Julie Schwartzman-Morris, MD, associate professor at the Zucker School of Medicine at Hofstra, joint pain, swelling, and stiffness — particularly when it’s in the morning and improves with activity — are the key signs of psoriatic arthritis she looks for when diagnosing a patient.
“One of the things about psoriatic arthritis compared to [non-inflammatory arthritis] is that you actually feel better when you’re moving and worse when you’re stationary,” agrees Dr. Haberman. While psoriatic arthritis could impact any (or all) of your joints, the most common places where symptoms appear, particularly early in the disease’s progression, are your fingers and hands, toes, knees, and hips.
At the time of her diagnosis, Salazar says that the pain and stiffness in her hands was so bad, she had a hard time opening cans, writing, and typing. “My wedding rings had to be cut off of my finger,” she says.
Similarly, Hertzberg says that her hands were in so much pain, she “couldn’t hold a fork like a normal person.” “My mom was over one day for a barbecue, and she noticed how I was gripping my fork. And she’s like, ‘Do your hands hurt?’” says Hertzberg. “I thought I was really good at hiding it — I never complained about them or anything. But she said she noticed how I was holding the fork and it looked like I was in pain.”
Tendonitis, bursitis, and enthesitis
For Covert, one of the most surprising and debilitating symptoms she experienced was enthesitis, or inflammation of the entheses, in multiple places in her body. The tendons in her neck became so immobile, she says, she couldn’t rotate her head without pain for nearly six months.
Covert also experienced enthesitis in her elbow (what’s commonly referred to as tennis or golfer’s elbow) and her feet, which makes it difficult for her to walk. “Sometimes I need crutches because I can’t put any pressure down on [my feet] because the tendons are so tight within my ankle or on the bottom of my feet,” she says. Some days, when the enthesitis flares throughout her body, Covert uses a wheelchair.
Hertzberg also struggles with foot pain. “I’m a teacher, I’m on my feet all day…my feet would feel like they were on fire at the end of the day,” she says. “You feel like you’re walking on lava.”
Tendonitis, which refers to the inflammation of the sheath covering a tendon rather than the place where the tendon connects to the bone, is also common alongside arthritis, says Dr. Schwartzman-Morris. As is bursitis, or swelling of the fluid-filled sacs that act as padding between the bones in a joint. Hertzberg says that last summer, the bursitis in her knee was so persistent, she had to have its synovial fluid drained six times.
Spondylitis, or inflammation of the spine
After the skin, joints, and entheses, Dr. Haberman names the spine as psoriatic arthritis’s final domain. “People who have psoriatic arthritis can also have involvement of what we call the axial spine,” she says. “So this is not only the spine, but also the pelvis, specifically bones that are called sacroiliac joints.” When the pelvis, sacrum, and spine are inflamed, it can have a trickle-down effect, making it difficult to stand or walk.
“There would be flares where my lower back would hurt so bad, I felt like my spine was just going to bust in half,” says Covert. Salazar, meanwhile, says that pain from her spondylitis, or spinal inflammation, is so aggravated, it sometimes keeps her up at night.
“There are always a million reasons that you can have back pain,” says Dr. Haberman. Which can make it really hard for patients to realize that they’re experiencing a health condition that goes beyond just regular aches and pains. “Especially if you’re starting to have back pain at a young age, younger than 40 or 45, if you have psoriasis, it’s definitely something to think about to make sure that it isn’t from psoriatic arthritis,” notes Dr. Haberman.
Fatigue
With psoriatic arthritis, Dr. Haberman says, “your body’s spending a lot of energy trying to attack itself, basically. So often when [the condition] is really active, people will notice a distinct change in their level of fatigue.”
“Even just trying to function and do simple everyday tasks are difficult. Reaching, grabbing, just bending, all of that,” says Hertzberg, who notes that her mind also feels hazy when her psoriatic arthritis flares. “You get that brain fog where you can’t remember why he walked into a room, or you forget to take your medication one day…you forget little silly things.”
Systemic symptoms beyond the joints
“It’s important to know that psoriatic arthritis is systemic — it may lead to joint and skin symptoms, as we know, but patients with psoriatic arthritis also may develop ocular inflammation, liver inflammation, gut or colon inflammation, or colitis,” says Dr. Schwartzman-Morris.
Patients with psoriatic arthritis are also at increased risk of cardiac disease, something that Salazar knows all too well. “I had a constant tightening of the chest with my heart racing at times,” she says. “My cardiologist ran every test possible and found I had a healthy heart.” It was only once Salazar began treatment for her psoriatic arthritis that the inflammation surrounding her heart abated and her symptoms improved.
Hertzberg wishes that these systemic issues got more attention. “Something they don’t talk about a lot is that it affects all the organs in your body,” she says. “I go to the dentist all the time because I constantly have cavities…your teeth are bones and they’re literally just starting to fall apart.”
Hertzberg has also experienced uveitis (swelling of the eye), severe inflammation of her optic nerves, and the heart condition hypertrophic cardiomyopathy. “I had a heart attack two years ago. I had a SCAD, which is a spontaneous coronary artery dissection,” or a tear in the heart’s wall, she says. “[The doctors] aren’t sure what triggered it, which was really scary.”
Mental health symptoms
According to Dr. Haberman, research shows that people who have psoriatic arthritis have much higher rates of anxiety and depression than the general population. “There are a lot of reasons why that might be and we don’t really know the mechanism of it,” she says. “Some of it is, of course, you feel badly, you maybe can’t do the things you want to do,” and that could lead to depression. “But it’s not exactly the whole story.”
More research is needed to fully understand this link, but it’s research worth doing. “We know that patients who have psoriatic arthritis and depression are less likely to achieve remission than those who do not have depression,” Dr. Haberman says. “And some studies have also shown that people who have psoriasis are more likely to go on to develop psoriatic arthritis if they’re depressed.”
With this in mind, Dr. Haberman notes that “psoriatic arthritis does require a multidisciplinary approach to really get people to feel better, more holistically, than just a medication that affects their immune system.”
For Hertzberg, connecting with other people who have psoriatic arthritis has helped her not only learn more about her disease, but build a community that uplifts her mentality. “If it weren’t for all of the psoriatic arthritis groups that I’m a part of, there’s so much I would not have learned,” she says. “They inspire me and they encourage me.”
This community gives her the courage to ask the questions, to dig deeper, and to trust her body. “If my doctors aren’t going to be willing to get to know the disease better, I have to,” Hertzberg says. “And that’s helped a lot because I not only have a better understanding of my illnesses, but I also have a better understanding now of what I’m feeling, what I’m experiencing from head to toe.”