PsA, or Psoriatic Arthritis, is an inflammatory autoimmune disease which causes pain, swelling and/or stiffness in one or more joints, sausage-like swelling in the fingers or toes, pain around the feet and ankles, changes in your nails, and extreme exhaustion which doesn’t go away even with adequate rest. Many of the symptoms resemble rheumatoid arthritis and most of the treatment is actually the same as RA. Many of the patients afflicted with PsA also have psoriasis. This disease is very complicated and there are many different types of PsA, many different symptoms and many different treatments.
I was officially diagnosed with psoriatic arthritis in January of 2013, but if I was a betting gal I’d guess it first reared it’s ugly head back when I was in 5th grade. Throughout my academic life I battled many inflammation and pain issues with my knees and also my wrist. At the time there was always an excuse – overworking my joints, tendinitis from scooping ice cream (haha!), being too hard on my knees during Bethette practice – but looking back they were all symptoms of psoriatic arthritis. Bakers cyst, plica, thickening of the synovial tissue, chronic inflammation, sciatica, hot and painful joints … these are some of the symptoms I have (oh wow *sarcasm*, so similar to symptoms of PsA!)
During my journey I’ve found that talking to others who have PsA makes life a lot easier. To know there are others out there battling chronic pain, dealing with swollen hands, not moving from bed all day, etc can help ease your mind and start to let you find peace.
I get asked very frequently how I manage my psoriatic arthritis. I created the following 5 part series talking about how I manage my psoriatic disease. I’m currently not on medication, but I’ve been on my share (like humira, methotrexate, pain killers, neurontin, and more)
Catch up on this “Managing My Psoriatic Arthritis” Ask Juls series:
This series was created after having been asked the question “Did an elimination diet help you manage my psoriatic arthritis?”.
Short answer – YES
Long answer – YES, but I’ve also done a lot of other things as well to help manage my condition. I focus on the following 5 areas to help manage my psoriatic arthritis.
The following are resources that are helpful for Psoriatic Arthritis patients:
Spoonie Chat. I definitely suggest getting on twitter and participating in twitter chats. One that I always get online for is the Weekly Spoonie Chat hosted by Dawn (check out her tumblr here). Using the hashtag #spooniechat, Wednesdays from 9-11EST, you can join in others battling chronic illnesses. Each week there is a different topic with focus on challenges and situations we all face. You’ll not only learn from others that are in similar shoes, but meet amazing people to add to your support system.
Patient Chat. Every other Friday, Intake.me hosts #patientchat. Check out the calendar schedule here. Follow @Intakeme and @PatientChat. Intake.Me’s vision: We strive to empower patients and providers at each visit to improve communication and outcomes. Our mission is to streamline each doctor visit by providing tools that increase efficiency and improve communication between patients and healthcare providers. We believe patients are best served when they are empowered – with knowledge, data, and confidence to make the best decisions. We believe the patient is the central figure in the healthcare timeline – and that empowered patients are the key to solving many of the challenges with our healthcare system like care coordination and interoperability.
National Psoriasis Foundation. The foundation has so many amazing resources to point you to. A few of my favorites that you should definitely check out are Advance Online blog, their Talk Psoriasis/Psoriatic Arthritis Message Boards, their Financial Assistance Resource Center, and their information on applying for disability.
National Psoriasis Foundation One on One Mentor Program. Research continues to suggest that people with chronic diseases fare better when they maintain or create social connections with others. Psoriasis and psoriatic arthritis can be isolating, but it doesn’t have to be. Use the search tools the NPF have created to find a volunteer from Psoriasis One to One who is right for you. (Ps. I’m a mentor!! Pick me! Pick me!!)
WebMD Chronic Conditions Blog. WebMD has a great blog where a variety of chronically fabulous patient blog about issues that span conditions. Check out a post I wrote on ‘5 Lessons I Learned On Disability Leave.’
The following are personal blogs that are helpful for Psoriatic Arthritis/Psoriasis patients:
And a special THANK YOU to Everyday Health for naming It’s Just A Bad Day as one of the Top 5 Inspiring Psoriatic Arthritis Blogs 🙂
Do you have a psoriatic arthritis blog that you’d like me to add to the list? Let me know!!
The following are personal blogs from other Autoimmune Arthritis Patients: