December 17, 2021
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While I’m starting the new year feeling like I have a good handle on my health, it has taken a lot of learning to get to this point.
I’ve had plaque psoriasis since I was a child, but it wasn’t until 2017 that I was diagnosed with psoriatic arthritis (PsA). For years, it impacted only one finger, and the biologic medication I took for my psoriasis helped that finger, too.
But in 2021, my PsA flared up significantly and took over my health.
It started in the early spring when I noticed my foot was really hurting, both the arch and my big toe. I thought maybe I had injured it while exercising, so I took a few days off. A few days turned into a few weeks.
I turned to Pilates and yoga to try to relieve stress on that foot. When that didn’t help, I realized something more serious might be going on and started looking into the symptoms of PsA.
As the year progressed, my list of symptoms kept growing to include lower back pain, tightness in my hips, and pain and stiffness in both of my hands and feet.
Then I had two big flares, each lasting about 10 days. They were some of the most miserable weeks that I’ve ever experienced, with pain and stiffness impacting my spine, my ribs, my feet, and my ankles.
The fatigue felt suffocating. I felt like I could not get out from under it. Quickly, my normally rosy disposition became clouded and dark.
Over the course of the past year, I’ve learned a lot about PsA and how to best manage my own health. Here are seven lessons I’ve taken away from the last year, navigating unprecedented PsA flares.
I used to think that dactylitis, or a swollen digit, was the only symptom of PsA.
While it can be a telltale and unique sign of PsA, it is certainly not the only one. Since PsA is an autoimmune disorder, it can impact almost every part of the body, including your eyes.
Yes, even your eyes.
The best thing I did for myself as a PsA patient this year was to educate myself on how this condition operates, the symptoms it can cause, and what options I had for treatment and self-care.
You may think that you are experiencing something unrelated to PsA and then find out it is actually one of many ways the condition can manifest itself. This can be important information to help you track and chart your symptoms and the impact of treatment.
For me, learning more about PsA helped me realize that I was definitely not just imagining things.
For many years, I have seen dermatologists to manage my plaque psoriasis, and they have been wonderful. However, as I have experienced with many of them, they understandably don’t always comprehend the full impact of PsA because it isn’t their specialty.
Rheumatologists, on the other hand, specialize in conditions like PsA that affect the muscles, bones, and joints. Rheumatologists can help people living with autoimmune disorders like PsA manage their symptoms and figure out the best course of treatment.
My rheumatologist looks at my joints and range of motion, takes certain blood tests to check for inflammatory markers, and tells me about different medications and how they target PsA.
I now know that my rheumatologist is an essential part of my healthcare team.
I’m not proud to admit this, but I used to be pretty inconsistent with taking my medications. Once my plaque psoriasis was managed, I wasn’t as stringent with them. Over time, this can make your medications less effective.
But now I take my medication regularly.
I talked with my rheumatologist about different treatment options and certain nutritional supplements that may help me with some of my symptoms, and now I take those every morning.
I set a calendar alert to remind me to take my medication. I also may set up alerts about when to call for refills or check on supplies like alcohol swabs.
Brain fog is a symptom of PsA too, so don’t be afraid to employ different tools to help you get and take your medications on time, every time.
Before this year, I used to love doing high-intensity interval training (HIIT) as part of my regular workout routine. Jumping jacks, burpees, high knees… I loved getting my heart rate pumping.
When my PsA flared, those motions felt downright miserable and further aggravated my joints.
However, exercise is key to helping your joints feel as good as possible. It actually can help lubricate the joints, hence the common phrase “motion is lotion.”
At first, I felt lost when it came to exercising in ways that would get my heart rate up, keep my weight in a healthy range for me, and also make my joints feel good.
Through some trial and error, I have found exercises that I really enjoy that make me feel good in every way.
I invested in a low impact elliptical stepper, and I started doing some strength training with weights. I also found great low impact walking and step aerobic workouts online that I often start my mornings with.
It’s important to keep in mind that there isn’t a singular “best” diet for PsA. For me, it took experimenting with certain foods to see if making changes helped me feel better. It can be helpful to keep a food journal to start to recognize patterns in your flares and what you are eating.
I have found that what works best for my body is following an anti-inflammatory diet and trying to limit red meat, sugar, and alcohol.
I also found that gluten impacts my plaque psoriasis, and so I try to limit that in my diet, too. There are a lot of great gluten-free products on the market, and so many foods are naturally gluten-free as well.
When I do eat gluten, I try to do so at a time when I am exercising consistently, I don’t feel too stressed, and I’m getting enough rest. Diet is just one piece of the equation, and managing PsA is all about finding a balance that works for you.
Altering your diet can feel stressful or overwhelming. It can also be helpful to speak with your doctor or a registered dietitian about making changes to your diet in a way that supports your nutritional needs and feels sustainable.
These days, I try to follow the motto: Do not put off to tomorrow what you can do today.
Having two large flares this year, with a toddler at home and a husband who travels for work, I learned this lesson the hard way.
PsA can feel random at times. On some days, you might be able to pinpoint what triggers are intensifying your symptoms; on other days, you may wake up feeling stiff, sore, or fatigued with no explanation at all.
I try to complete important tasks and keep up with housework on days when I am able to, just in case I have a bad day tomorrow. It’s worth noting that pushing yourself too hard or too far can also result in a flare, so finding a balance can be a challenge.
Stress plays in so many chronic conditions, and PsA is no exception. When you are experiencing something stressful concerning your health, like wrangling insurance companies or sorting out medication deliveries, it can become a sort of vicious cycle.
Finding ways to relieve stress and relax is essential to disease management. There may be some things that you enjoy doing on days when you feel good, like taking a walk or doing yoga.
But it is great to cultivate some ways to relax on the days when you aren’t feeling your best. This can include listening to relaxing music, reading, or practicing meditation or prayer. There are several apps available too that offer guided meditations, relaxation exercises, and gratitude journaling.
The journey through PsA is different for every person, and the condition itself can present new challenges along the way.
I am happy to report that I am starting the new year with a new doctor, new medication, a new diet, and a new exercise routine. I feel like I have a good handle on my PsA, but it took a lot of learning to get to this point.
I hope that these lessons I’ve learned from navigating a difficult year will continue to serve me, and perhaps help you, today and into the future.
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