Advice for those Newly Diagnosed with Psoriatic Arthritis
Receiving news of a psoriatic arthritis diagnosis can often be jarring. We get the news, and often don’t know what to do next.
The good news is that you are not alone. An entire community of those with psoriatic arthritis has learned how to cope on a daily basis. On the Psoriatic-Arthritis.com Facebook page, we asked the community for one piece of advice that they would give to someone recently diagnosed with the disease.
Nearly 50 of you commented, and here’s what you had to say.
Learn all you can about the disease
Educating yourself on psoriatic arthritis can help you understand what to expect—from the symptoms to the solutions. The more you know, the better equipped you will be to move forward.
“Read up, but know everyone is different and what triggers flare-ups in one person won’t necessarily cause flares in you. Meds affect everyone differently, too. Even the disease itself affects everyone differently.”
“Learn all you can about the disease. Everyone’s path is different. Food is NOT a trigger for everyone, actually less than people think.”
Keep a simple journal to track pain level
Everyone’s body is different, and everyone’s reactions to psoriatic arthritis are different. To better understand your disease, it can be helpful to track your symptoms. Every day, track your events and your pain so you and your doctor can learn what your specific triggers are so you can avoid them.
“I would suggest keeping a simple journal or chart to track pain level compared to diet, weather, and circumstance. It can be difficult to develop the habit, but it will help you to recognize triggers and learn to avoid them easily or adapt.”
“I sat down and wrote all of my symptoms down. It took a three-page letter. My rheumatologist said it was incredibly helpful. I think I saved myself from months of monitoring by writing it all down.”
Although running, weight-lifting and other forms of high-impact exercise can be stressful on bodies with psoriatic arthritis, in general, exercise helps reduce pain in joints, as well as swelling and stiffness. Yoga, swimming, walking, tai chi and other light forms of exercise work wonders.
“Keep exercising, even if it hurts miserably. If lack of activity results in significant weight gain or just simply being out of shape, your arthritis will get worse.”
“Exercise, and don’t overdo work.”
“As previously mentioned, exercise. While my meds take care of my glucose levels, I found that exercise keeps the pain away.”
Learn to plan for recovery time
Budgeting in downtime may help you feel better overall. By building it into your day or week, you’ll be giving your body a chance to recover as needed. If you start to notice that you’re especially fatigued after certain events, plan to give yourself a break afterward.
“Learn to plan for recovery time/days after big events. I plan for delivery or a heat-and-eat meal on grocery shopping day because I’ve learned that I will be too worn out to cook after shopping.”
You will go through the phases of grieving
Grieving is a natural reaction after learning of one’s diagnosis. It takes time to accept that your life will look different from now on—and that you’re saying goodbye to some aspects of the life you knew.
“You will go through the phases of grieving, more than once—let yourself.”
“I found there has been kind of a grief process for the life I had prior to diagnosis. To move through the grief, look after yourself, live mindfully and go at your body’s pace.”
Your friends and family can certainly provide support, but a therapist or counselor may provide a greater degree of support and understanding. A professional counselor might be able to help you shift your attitude and find a greater degree of acceptance of the condition.
“If it’s a severe version: seek psychological aid in order to reach acceptance.”
“Seek counseling if you need to.”
“Find an excellent rheumatologist.”
The right doctor makes all the difference. You want to find a rheumatologist who takes the time to listen to you, and who works with you to figure out what’s going to work best for you and your circumstances.
“Find compassionate rheumatologist and primary physician.”
“Find a good consultant that listens to you! I spent 20 years going to different GP’s who diagnosed me with everything from eczema to ringworm before I paid to see a specialist dermatologist to diagnose the psoriasis.”
“Find an excellent rheumatologist. Without the advice and support of a knowledgeable, supportive doctor, it all becomes more difficult. If your doctor isn’t working for you, kick ’em to the curb.”
“Don’t feel guilty about saying no.”
You may find that you need to slow down, take more breaks and say no to more than you used to. That’s OK. You may also find that friends and loved ones need to adapt as well to understanding your new limits. Remember that you’re the only one who knows when your body needs a break, so don’t be afraid to give yourself one when you need it.
“Learn to listen to your body. On good days, do things only until you begin to feel pain or fatigue, and then rest. That will help prevent the crashes that can last for days. Ignore comments that you should just force yourself to do more or that you are being lazy. Respecting how you really feel makes a big difference.”
“Get lots of rest and don’t feel guilty about saying ‘no’ or ‘I can't go’ if you have to."
“Turn to your support groups.”
Whether you’re one day or one year into your diagnosis, it can help to talk with those who understand what you are going through. Support groups such as that of the Psoriatic Arthritis Facebook page provide understanding and allow you to talk openly and freely about your PsA. You may also receive tips on how to handle aspects of the condition.
“Turn to your support groups when you’re not feeling great. I feel like when I am struggling they are they ones that understand what it is like.”
We want to say thank you to everyone who so generously shared about their PsA and what has worked best for them.
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