It’s hard to do everything you know you “should” be doing when symptoms like pain and fatigue keep getting in the way.
When it comes to my psoriatic arthritis (PsA), weight gain makes things harder on my joints. Joint pain, stiffness, and swelling are the hallmark symptoms of PsA, a chronic inflammatory autoimmune disease that affects the joints and connective tissue, like tendons and ligaments.
Though it’s logical to think that managing your weight can also help manage your quality of life, that’s easier said than done when your body hurts.
PsA has both slowed my mobility and increased my need to nap, thanks to the fatigue. My rheumatologist helps guide my treatment decisions. However, I feel like I’m a bit on my own when navigating the lifestyle decisions that affect my weight and my quality of life.
I’ve tried the ketogenic (keto) diet, WW, and Noom, all with some success. However, none of these programs seemed helpful through the lens of chronic inflammatory autoimmune disease. Encouraging me to get my steps in or log my daily exercise makes me feel like a failure on those days when the condition renders me just not able.
Andrew Concoff, MD, executive vice president and chief value medical officer for United Rheumatology, is one of the few rheumatologists who has completed fellowships in both rheumatology and sports medicine.
“Many of the things that would be recommended, like exercise, nutrition, and mind-body approaches to stress, are great for anybody,” he says. “It just turns out that if you have psoriatic arthritis, these things are even more important for you. But unfortunately they are more challenging to enact effectively.”
That’s a source of great frustration when you’re really trying to figure it all out. Concoff says rheumatologists need to be particularly sensitive to the challenges associated with enacting those lifestyle changes and be flexible in helping patients navigate the struggles they come across.
I know that when it comes to managing my PsA, exercise is important too. It’s not just about weight loss but also about functionality. Synovial fluid surrounds each joint, and when it is in motion, the fluid circulates more easily and lubricates the joint. This is super important for people with arthritis.
I’m not an athlete by any stretch, but I am an active mom who likes to garden and dance. However, I’ve tried establishing routines to build upon around the activities I enjoy.
It feels great for a few weeks, and then I inevitably hit a brick wall. Fatigue is usually what brings me down. The kind of fatigue that invades your brain, prevents you from thinking clearly, and forces you to power down. It’s my body telling me it has had enough.
I get discouraged and convinced that all the good I’ve done with my workout regimen has been undone by the need to rest. I mean, exercise builds on itself, right? That’s how muscles get stronger. I’ve often wondered, do I have a “new normal” when it comes to physical activity?
Concoff says my propensity to keep going when I feel good and to stop only when I don’t feel good anymore is a common mistake.
“When you hit the wall, you’ve done too much too fast,” he says. “Lower levels of exercise performed consistently are better than intense exercise that stops because it causes problems.”
When it comes to exercise and PsA management, Concoff says to be disciplined and view energy as a resource.
“Pace yourself” is something I have heard so many times. I’ve come to loathe that phrase because, though many people — my husband, my doctor, my mother — have said this to me, no one has really been able to explain it to me in a way that helps me implement it as a busy mom with a career.
Concoff explained to me that we each have a certain amount of energy available that we can think of like money in a bank account.
“If you go and spend too much of that energy by making a big withdrawal, you can quickly end up in the red,” he said.
The lightbulb turned on when I heard this. He stresses that we don’t expend energy only on physical exertion.
“I’m talking about mental energy, stress-related energy expenditures, lack of sleep (which is another big factor), and I’m talking about exercise,” he says. “We need to budget how we spend our energy, because you will hit a brick wall with psoriatic arthritis if you don’t have a healthy respect for the fatigue and energy expenditures.”
This is hard to implement as an ambitious person who is out to get all I can from life, but what Concoff said next hammered it home for me:
“I respect it as a human virtue, but being a go-getter to that degree is a challenge from a personality perspective. It gets in the way of succeeding when managing psoriatic arthritis.”
Concoff suggested that I work with a physical therapist to design a program that fosters a disciplined approach and works for me. I’ve sought physical therapy as a response to an injury or to help recover from surgery, but I’d never thought of using physical therapy proactively.
Step one to fighting inflammatory autoimmune disease, according to Concoff, is finding the right medicine, and then “step one-A, not even step two,” he says, “is getting back to wellness and getting back to health.”
This involves lifestyle factors and creating an environment that’s conducive to better health and not conducive to PsA flares.
Rheumatologists should “take a deep dive into these lifestyle factors and try to create an environment that is a troubleshooting, problem-solving arrangement,” he says.
Controlling my diet is where I’ve experienced the most success in my weight loss journey. The weight I’m working to lose has all been gained since my diagnosis 10 years ago. I want to get back to my pre-diagnosis weight.
I’ve successfully lost 35 of my target 50 pounds by focusing on what I eat.
“Nutrition is a very individual, personal experience,” says Concoff. “I think it’s important to find the nutritional approach that works for you.”
He believes nutrition should be more personalized. For example, he points out that blood glucose levels vary greatly from one person to the next, even when both people eat the exact same foods.
“Paying attention to your body and learning what works for you and what doesn’t work for you is a critically important part of the lifestyle approach to the disease,” says Concoff.
He recommends being mindful about what you eat and when you eat and slowing down while eating to pay attention to your food. This is something that has helped me a lot.
Managing a chronic condition is stressful and heart-wrenching. It’s easy for me to overeat when I’m having a hard day.
I’ve started asking myself before I eat, “Am I hungry?” Recognizing why I reach for food is a big step in mindful eating. Maybe it’s a deep breath I really need — and not a handful of chocolate chips from the freezer.
I’ve tried so many things and have experienced successes here and there, and though it can be frustrating, the best part about working on wellness, according to Concoff, is that “you have infinite chances to get it right at any moment.”
I do want all I can get from this life. That means I need to do all I can to make the choices that give my body the best chance of controlling PsA and managing my quality of life — so I can do the things that are most important to me.
I have to be wise enough to look at the big picture and not go running full speed into a brick wall. I have to be wise enough to have the good judgment to create something that works. And I have to be kind to myself through the process.
Bonnie Jean Feldkamp is an award-winning freelance writer and columnist. She is the communications director for the National Society of Newspaper Columnists, a member of the Cincinnati Enquirer Editorial Board, and a board member for the Cincinnati Chapter of the Society of Professional Journalists. She lives with her family in Northern Kentucky. Find her on social media @WriterBonnie or at WriterBonnie.com.