It’s hard to do everything you know you should when symptoms like pain and fatigue are constantly in the way.
When it comes to my psoriatic arthritis (PsA), the weight gain makes my joints difficult. Joint pain, stiffness, and swelling are the characteristic symptoms of PsA, an autoimmune chronic inflammatory disease that affects joints and connective tissues such as tendons and ligaments.
While it is logical to believe that controlling your weight can also help improve the quality of your life, that is easier said than done when your body hurts.
PsA has both slowed my mobility and increased my need to nap due to fatigue. My rheumatologist helps with my treatment decisions. However, I feel like I’m a little alone when making the lifestyle choices that affect my weight and quality of life.
I’ve tried the ketogenic (keto) diet, WW, and Noom, all with some success. However, none of these programs appeared to be helpful from an autoimmune chronic inflammatory disease perspective. When I encourage myself to take my steps or to log my daily exercises, I feel like a failure on the days when the condition just makes me unable.
Andrew Concoff, MD, Executive Vice President and Chief Value Medical Officer of United Rheumatology, is one of the few rheumatologists to have completed both rheumatology and sports medicine fellowships.
“Many of the things that would be recommended, such as exercise, diet, and mind-body approaches to managing stress, are great for everyone,” he says. “It just turns out these things are even more important to you if you have psoriatic arthritis. But unfortunately it is more difficult to implement them effectively. “
This is a source of great frustration when you are really trying to figure everything out. According to Concoff, rheumatologists need to be particularly sensitive to the challenges associated with making these lifestyle changes and be flexible to help patients cope with the problems they encounter.
I know exercise is also important when it comes to managing my PsA. It’s not just about weight loss, it’s functionality too. Synovial fluid surrounds each joint, and when it is in motion, the fluid circulates more easily and lubricates the joint. This is very important for people with arthritis.
I am not an athlete, but I am an active mom who enjoys gardening and dancing. However, I have tried to establish routines that I can build on around the activities I enjoy.
It feels great for a couple of weeks and then I inevitably hit a brick wall. Fatigue is usually what pulls me down. The kind of fatigue that invades your brain, prevents you from thinking clearly and forces you to switch off. It’s my body that tells me it’s had enough.
I get discouraged and believe that all of the good I have done with my exercise program has been negated by the need to rest. I mean movement builds on itself, doesn’t it? So the muscles get stronger. I have often asked myself, do I have a “new normal” in terms of physical activity?
Concoff says my tendency to move on when I feel good and only stop when I no longer feel good is a common mistake.
“If you hit the wall, you’ve been doing too much too fast,” he says. “Less regular exercise is better than intense exercise that stops because it causes problems.”
When it comes to exercise and PsA management, Concoff says be disciplined and see energy as a resource.
“Pace yourself” is something I’ve heard so many times. I hate that phrase because although a lot of people – my husband, my doctor, my mother – have said this to me, no one could really explain it to me in a way that it helps me, as a busy mom with a career.
Conoff explained to me that each of us has a certain amount of energy that we can think of as money in a bank account.
“If you expend too much of that energy on a big withdrawal, you can be in the red quickly,” he said.
When I heard this, the light bulb went on. He emphasizes that we do not only use energy for physical exertion.
“I’m talking about mental energy, stress-related energy expenditure, lack of sleep (which is another important factor) and I’m talking about exercise,” he says. “We have to budget how we use our energy because you will hit a wall with psoriatic arthritis if you don’t have a healthy respect for fatigue and energy expenditure.”
This is hard to do as an ambitious person looking to get the most out of their life, but what Concoff said next brought it home for me:
“I respect it as a human virtue, but being a daredevil to this extent is a challenge from a personal point of view. It hinders success in treating psoriatic arthritis. “
Concoff suggested I work with a physical therapist to develop a program that encourages a disciplined approach and works for me. I have used physical therapy in response to an injury or to recover from surgery, but I would never have considered using physical therapy proactively.
The first step in fighting autoimmune inflammatory disease, according to Concoff, is finding the right drug, and then, “Step one-A, not even step two,” he says, “is going back to wellbeing and health.”
This includes lifestyle factors and creating an environment that is conducive to better health and not conducive to PsA flare-ups.
Rheumatologists should “dive deep into these lifestyle factors and try to create an environment that is problem solving and problem solving,” he says.
Controlling my diet is where I have had the greatest success in my weight loss journey. I’ve gained the weight I’m working on since I was diagnosed 10 years ago. I want to get back to my weight before diagnosis.
I have successfully lost 35 of my targeted 50 pounds by focusing on what I am eating.
“Nutrition is a very individual, personal experience,” says Concoff. “I think it’s important to find the nutritional approach that works for you.”
He is of the opinion that the diet should be more individual. For example, he points out that blood sugar levels fluctuate widely from person to person, even if both people eat exactly the same foods.
“Taking care of your body and learning what works for you and what doesn’t is an extremely important part of the lifestyle that treats the disease,” says Concoff.
He recommends paying attention to what you are eating and when you are eating, and slowing down as you eat to be mindful of your food. This is something that has helped me a lot.
Treating a chronic condition is stressful and heartbreaking. It’s easy for me to overeat when I’m having a tough day.
I’ve started asking myself, “Am I hungry?” Before I eat? Realizing why I’m reaching for food is a big step in mindful eating. Maybe it’s a deep breath that I really need – and not a handful of chocolate chips from the freezer.
I’ve tried so many things and had success here and there, and while it can be frustrating, according to Concoff, the best part about working on wellness is that “you have endless chances of getting it right anytime”.
I want everything I can get from this life. That means I must do everything I can to make the decisions that will give my body the best chance at controlling PsA and control my quality of life – so that I can do the things that matter most to me.
I have to be wise enough to look at the big picture and not run into a wall at full speed. I have to be wise enough to have good judgment to create something that works. And I have to be kind to myself during 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 of the Cincinnati Chapter of the Society of Professional Journalists. She lives with her family in northern Kentucky. Find her on social media @WriterBonnie or on WriterBonnie.com.