Community Views: Daily Life with Psoriatic Arthritis
Living with psoriatic arthritis (PsA) is a struggle. Dealing with joint inflammation and chronic pain takes a daily toll. The many symptoms upend life as it was.
A look at life with PsA
PsA can add a layer of extra challenges to daily life. During flares, your joints can become stiff and swollen. This can make it harder to do certain activities, like getting dressed, cooking, or opening doors.
Wanting to hear your experiences, we prompted the Facebook community, “Tell us what daily life looks like as someone who lives with PsA.” Some consistent themes emerged from your comments.
Exhaustion and fatigue
Many of the responses highlight the exhaustion and fatigue of PsA in your life. Managing this disease zaps your energy. Your body needs lots of rest.
“It’s almost 2 in the afternoon, and I am still in my PJs doing nothing because I have no motivation after a long, pain-filled, sleepless night.”
“I wake up tired even after lots of sleep. I struggle to get out of bed.”
“Fatigue, anxiety, but to the outside world you look lazy.”
Along with exhaustion and fatigue, pain is a constant with PsA. You shared how much you hurt every day. Pain limits what you can do and robs you of activities you love.
“Most days are filled with pain, fatigue, and more pain.”
“I love to garden, but lately, it’s been so hard I’m thinking about giving it up.”
Difficulty of completing chores and work
The pain and fatigue of PsA make daily life challenging. Basic tasks are draining and require a lot of effort.
“Some days, I CRY getting out of bed knowing I have to go to a job that abuses my body so badly.”
“I’m getting to where I can’t even make it through a store.”
“I have to break down changing the sheets into segments and take several breaks along the way. Afterward, I’m done in for the remainder of the day.”
Moving and stretching
Many of you find taking time for stretching as you begin the day helps you manage the pain. Stretching keeps the muscles flexible. It also maintains the range of motion in the joints. Stretching a few times during the day can be even better than just stretching once in the morning.1
Getting some regular exercise is also helpful, though challenging. Walking, biking, swimming, or other low-impact activities also keep the joints flexible.1 At the same time, it is difficult. These activities often cause pain.
“It takes about 30 minutes to get out of bed because I stretch my hands, feet/ankles, and back.”
“I wake up and try to stretch out my legs and move them to the side of the bed to get out of it. On a good day, it takes about 10 minutes to get out of bed; bad ones can be as long as 30.”
“I make sure to ride my stationary bike at least 5 days a week, 6 miles each ride. It helps take my mind off the pain, and I usually have a decent 5 minutes afterward.”
Life with PsA is unpredictable. You never know from day to day how you will feel. Making plans is hard when your body may or may not cooperate. You try to take advantage of the good days and appreciate them. Unfortunately, there are many bad days, too.
“Every morning, I dip into a grab bag of symptoms. I’ve been down more than up lately.”
“Russian roulette. I never know what’s going to hurt, how much it will hurt, and for how long.”
“Every day is different. There are good days, and there are bad days. I have found new ways to appreciate the good days because they are few and far between.”
“I hold on to the old saying, ‘Make hay while the sun is shining,’ as I never know what the day will bring.”
Making some changes throughout the day can make a big impact on your pain levels, productivity, and how well you feel overall.
We appreciate everyone who shared a glimpse into your daily life with PsA. It is a privilege to be part of your journey.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?