Psoriatic Arthritis

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Psoriatic Arthritis
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    Julia Metraux

    7 Ways People with Psoriatic Arthritis Practice Self-Care

    Finding ways to manage stress is important for everyone, and if you live with a chronic condition like psoriatic arthritis, stress can cause flare-ups. Psoriatic arthritis is an inflammatory form of psoriasis that is characterized by joint pain, stiffness and swelling. One way that people who live with psoriatic arthritis can take care of their mental and physical wellbeing is through self-care and making other modifications to their daily routine, in addition to medical treatment. In an article for The Mighty , contributor Ellie Trinowski outlined some steps that she has taken to make her life with psoriatic arthritis easier. Ask for help…be creative and consider the offers people have already made that you may not have accepted yet. Whatever you need to feel accomplished without utilizing your precious energy. Finding self-care methods that work for you can be a trial and error process. So, we asked members of The Mighty’s psoriatic arthritis community to share ways that they practice self-care while living with chronic illness. You may find that you already do these, or find inspiration for new self-care activities. This is what our community shared: 1. For me, 10 to 15 minutes in the hot tub upon waking gets my joints less stiff and helps reduce pain. Just before going to bed, another 10 to 15 minutes in the hot tub is soothing to the joints, helps reduce pain, and promotes relaxation and sleep. Some studies suggest that thermal therapy slightly decreases chronic pain. However, hot water could lead to some people’s skin to become drier, which could aggravate psoriatic arthritis. 2. I try to remain in a stable environmental temperature around 74F. Avoiding extremes and frequent temp change place less demand on my joints. As both the cold and warm weather could trigger flares for people living with psoriatic arthritis, according to the National Psoriasis Foundation, finding a stable temperature could help you manage your symptoms. 3. Holding ice cube in hand. If your psoriatic arthritis affects your mental health or you need a distraction from your pain, this is a trick you can try. When you hold the ice cube, your mind will focus on the cold, which could distract you from what is on your mind or the pain you are in. 4. Several large ice packs (12×12″), I lay them on my be, lay down on them until the pain is numbed (15-20 mins), a tremendous friend for me! Hot showers, and a heating pad. A 2014 study found that a combination of thermotherapy and cryotherapy can help manage acute lower back pain, so it may help manage other forms of chronic pain, like those triggered by psoriatic arthritis. 5. Exercise, when it comes down to it, there comes the time to say no. For many years I have walked, swam, did water aerobics and physical therapy. But, the time has come when my body is breaking down so rapidly that the advice no longer applies. Exercise can be important in managing many chronic illnesses, but it is important to know your limits. If your body is telling you you’re pushing yourself too hard, it is okay to take a pause. 6. I wear winter gloves to the grocery shop. That prevents the development of severe hand pain. Wearing compression gloves can help reduce swelling and pain. Wearing regular winter gloves could also help you stay warm if the cold is one of your triggers. 7. Knowing my limits. If a task or getting through my day gets too difficult, I allow myself to take a breather and watch movies. Self-care doesn’t always need to focus on managing symptoms. You can also do stuff that makes you happy, like watching your favorite movie. For more insight on psoriatic arthritis, check out these stories from our Mighty community: The Tough Choices I’ve Had to Make in Life With Chronic Pain The Mighty Style Diaries: Colorful and Comfortable With Psoriatic Arthritis To the Little Girl Who Called My Arthritis ‘Badass’ Share any self-care ideas that we might have missed to manage psoriatic arthritis in the comments below.

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    Danya Boyer
    Danya Boyer @dpb
    contributor

    Take Better Care of Your Psoriatic Arthritis with These Tips

    When I was first diagnosed with psoriatic arthritis (PsA) about six years ago, I did not realize how much it would change the way I manage my health. I had to adapt different aspects of my life in order to maintain a more pain-free existence. It took several years, but here are some tips I have learned that help me manage PsA better. Practice clean eating. PsA causes higher inflammation in the body. To help reduce inflammation, choose berries and green, leafy vegetables instead of processed foods. Eat beans and whole grains, which are loaded with fiber, in place of white rice. Also, fish like salmon and tuna have omega-3 fatty acids, which assist with inflammation reduction. Eating whole foods versus processed foods can also help decrease inflammation. Less inflammation means more energy to engage in extra activities. Use pacing techniques. Instead of tackling a large task all at once, break it up into smaller segments. One technique I implement is my “take 10” plan. If you break down activities into 10-minute increments, it can help you feel more productive. For instance, instead of cleaning the whole house in one day, I concentrate on a room per day. I will take 10 minutes to clean the bathroom sinks, then go back later and take 10 minutes or so to clean the shower, etc. Splitting up the tasks helps prevent my body from getting worn out, while still getting chores done. Use mindful meditation. Mindful meditation can help train your mind to stay in the present moment, rather than ruminate over the past or worry about the future. Living with chronic illness can make it easy for your thoughts to be consumed by what complications could occur later. Mindful meditation has helped focus my cluttered mind on the current moment, rather than worry about what “could” happen next. While listening to soothing sounds or music, let thoughts come in, acknowledge them, then let them go — just like watching clouds pass in the sky. Concentrate on sounds rather than on thoughts. Do this for at least three minutes at a time, or more if time permits. This trains the mind not to ponder arbitrary thoughts excessively. It also helps relax the body, which can reduce pain levels. Keep moving. Even though pain can deter anyone from exercising, it is important to continue to move. This relieves stiffness, as well as prevents atrophy of the muscles.  Additionally exercise releases endorphins in the brain, which help reduce the sense of pain. Many people associate exercise with running a mile, but any kind of movement can be considered exercise.  When going to the grocery store, walk down every aisle, even if you don’t need anything there. Go to your favorite clothing store, and walk the entire perimeter.  When you park in the parking lot, take the last space farthest from the door. Finally, while watching TV or cooking, walk in place, or do squats and lunges. You need to move more now in order to keep moving in the future. Engage in social activities. I know it is easy to isolate socially while living with PsA, but it is important to our mental health to interact within the neighborhood. Being social allows you to connect with society and promotes a feeling of security and happiness. Take a class, pick a hobby, join an online group or volunteer in the community. For instance, I enjoy making my own greeting cards. I found an organization that will take my cards and distribute them to hospitals and senior homes. This gives me a sense of accomplishment and purpose. Go to a good therapist. I initially started going to psychotherapy because I also live with major depression . However, I discovered that therapy also helped teach me coping skills for dealing with my adverse feelings toward living with chronic illness . Furthermore I have gained confidence in myself and no longer fear the future. I also finally grieved the loss I feel as a result of my illnesses. It took work but choosing to go to therapy has been the best decision I have made in my life. By making some modifications, one can live a fulfilling life with PSA.

    Julia Norton

    A Day in the Life of Someone Living With Psoriatic Arthritis

    My alarm gently guides me to wakefulness, birds chirping and slight sunlight in the background. I’ve set three alarms, and this is just the first. I turn it off and roll over, completely exhausted. Soon alarms two and three go off, and I reluctantly get out of bed. I feel aches and pains in every inch of my body. Gosh, how I wish I could get insurance to pay for a new mattress. But it’s a luxury I can’t quite yet afford and one I pay for daily with constant back pain. I hobble into the kitchen to get my morning OJ; I have to take my medicine first and foremost. I hide the bags under my eyes with makeup, carefully select an outfit that is comfortable, soft and easy to move in, and I leave the house to head to work. This is a day in my life — as someone living with psoriatic arthritis (PsA). I had to switch to part-time a couple of years ago because I was so tired all the time, missed so many days for doctor’s appointments and was just burnt out. After I was diagnosed with PsA, I went back to graduate school because there aren’t many jobs you can do with a bachelor’s in psychology that is strictly office work. Now I have a job that is primarily sitting and talking. Vocational rehab helped me set up my office in an ergonomic fashion to help me manage my physical pain. And while that’s somewhat helpful, nothing fixes the fatigue. It’s a half-day at work today; I have several doctor’s appointments this afternoon that I couldn’t get scheduled on my days off. They are all located about an hour away, so I leave before lunch to get to the first one on time. By the time I get there, I am stiff from sitting in one position for so long, and I have to stretch before I enter the pain clinic. It’s a routine check-up. I sit down and start to fill out paperwork to describe my pain since I was last seen. The location, the type of pain and the intensity. Then I’m called back and have a brief chat with my doctor about my treatment plan. I leave and drive about 15 minutes away to the hospital. My rheumatologist is located there, and I check in with him briefly. I update him on all my changes in medications and all the problems I’ve experienced in between visits (especially any infections, since I am technically immunocompromised now). I tell him my shoulder has been hurting more and more. He does a physical exam and sends in a referral for me to get an x-ray. In the meantime I ask him to refer me to an orthopedist for the issue. He obliges and I head to another floor to settle in and get an infusion that helps with my symptoms. The infusion takes two hours, and I entertain myself by watching movies. I just got a permanent port placed because my veins are essentially worn out. I’ve been getting these infusions since 2016; the last time I had one prior to my port, they had to stick me six times to get an IV. My veins either blew or collapsed. The port makes it easier for me to receive my medication, but it is a risk to have it since I am immunocompromised. However, it was a risk I decided I had to take, since the five or so other medications I had tried all failed. This one works. My infusion is finally done, and I’m able to go home and pick up some fast food on the way. I feel drained after my infusion and when I get home, I lie down for a moment, only to fall asleep for two hours. I wake up feeling refreshed enough to go through my bedtime routine. I remove my makeup, take my evening medicines and dole out my morning medications so they’ll be ready. (I most definitely am not a morning person.) I watch an episode of Lucifer, my new binge-worthy show on Netflix, and try to get my brain to reset for tomorrow. Fortunately I don’t work tomorrow and only have one doctor’s appointment, so I’ll probably get about 14 hours of sleep. Then I’ll wake up at 2 p.m. in order to drive an hour and a half to my doctor’s appointment; I intentionally scheduled it at that time so I could catch up on sleep. Taking care of my health is a full-time job. I see no less than seven specialists. I typically have multiple doctor appointments during the week, and I am trying my best to work an additional three days a week. I am beyond exhausted all the time and in constant pain despite medications. But I continue to enjoy my work, so much so that even when I apply for disability later this year, I plan to continue to work as much as I’m allowed. I also have friends that are hugely supportive, from taking me to surgeries to going out to dinner. They are always there for me. My husband is a constant comfort too, as well as a reliable source of help. Through it all I have managed to develop hobbies that I enjoy doing on the days I have completely off. While each day is a challenge, each day also typically holds some small joy for me to discover. And that, my dear reader, is a day in the life of someone living with psoriatic arthritis.

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    Why Psoriatic Arthritis Patients Can Survive a Zombie Apocalypse

    Thank heaven for AMC and “The Walking Dead!” Every Sunday during its season, I feel less and less alone. Why? 10. Many patients have loads of food allergies. A lot of us already survive on nuts, greens and twigs. We won’t be out looking for saltines and giant cans of chocolate pudding because we are allergic to them. Like my husband says: “I’ll eat the pizza, you can eat the cardboard box.” 9. As chronically ill patients and patient advocates, we are ahead of our game, paving the way, instead of following the crowd. Ingenuity is a terrific survival skill. 8. As victims of devastating fatigue, we are used to skipping a shower once in a while. 7. Because we have a tendency to have painsomnia, we are cool with hunting at night. 6. Unlimited stores of prednisone and methotrexate in abandoned pharmacies will keep us going for a long time. None of the other living humans will want these. 5. Due to a less plentiful supply of processed foods, we will be grateful to finally lose weight on prednisone. 4. Our psoriasis, flakes, plaques and lesions can provide camouflage. 3. After a night or two without sleep due to painsomnia, we can be as inarticulate as the zombies, blending right in. 2. Our popping, cracking joints, coupled with hyperflexible tendons, sometimes have us shuffling and tripping along like zombies. 1. After compiling this list, I realize psoriatic arthritis and other chronically ill patients are already like the “walking dead” and we are already surviving!

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    Chronic pain life hacks? #ChronicPain #ChronicIllness

    I’d like to be more productive around my house, but my lower back pain makes things so difficult. Have you learned any tips during your journey?

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