Ask the Community Members: Our Most Painful PsA Symptoms

I don't know how many more times we can scream, yell, or say loudly: "Psoriatic arthritis is so much more than joint pain!" I mean, is that really what people think – that the joints of our knees and hips are just a little tight, and all it takes is some light movement and stretching to feel better?

Get a grip, because we physically can't. Seriously, we can't grip. Our fingers are too swollen, and those little knuckled joints can't make a fist. Can you see how psoriatic arthritis is more than "just" joint pain yet?

What are the other unknown and overlooked symptoms of psoriatic arthritis?

Throughout this Ask the Community Member article series, we've touched on the emotional journey of managing psoriatic arthritis (PsA). In the words of the late great Olivia Newton-John, let's get physical.

A few community members here at Psoriatic-Arthritis.com weighed in and provided some insight into their most painful PsA symptoms. Let's gently dive in.

What symptom causes you the most issues? How would you describe what the symptom feels like to others?

"The symptoms that cause me the most issues are fatigue and joint pain. The fatigue is accompanied by brain fog. There are days when I don't want to get out of bed, but I do. I make the transition from bed to chair in small increments. It takes about 15 minutes on a good day to get up and walk. Then I wander around in a fog, not half knowing what I am doing next.

I get coffee and sit because that small amount of moving around has caused my knee joints to burn and feel like they won't support my weight much longer. Standing makes the fire in my lower back flame and burn. Sitting causes my knee joints to stiffen up. It's a vicious cycle." – Rosah

"This question is probably the most difficult to answer with any real certainty. Every symptom causes 'the most issues,' just at different times. The most inconvenient symptom, at least one that happens during flares, is exhaustion. It is soul-crushing. There is no other way to describe it.

Not having the energy even to take a shower, fix a meal, to make your bed, it's depressing. And if it lasts more than a few days, it just presses down on your being like a heavyweight.

The pain I can deal with. Having to modify my activities and my schedule, I can deal with. But when I am so exhausted that I just don't care whether or not I ever get through the flare, that's just something I have trouble dealing with. I would compare it to drowning. You struggle with all your might, and you want to live, but at some point, your struggle becomes meaningless because you know this will happen. There's nothing you can do about it, but you can't accept it." – Eric

"My feet and hands always hurt the most. The joints in my hands 'scream' at me. And I experience tingling and numb fingers daily. But lately, it is also my shoulders, knees, hips, elbows, and wrists. The pain and tenderness travel around my body and change daily and sometimes hourly." – Dedra

"My ankles, especially the left, limit my mobility. I battle pain and stiffness daily. Sometimes smooth casting is required to bring down swelling. More than my hips and knees, my feet and ankles make me fearful of becoming a wheelchair user. Long walks for pleasure are no longer an option. My shopping trips are shorter. Telling my beautiful grandson that I could not play tag broke my heart.

My right hand, if I use it too much for cooking or other chores, just aches, swells, and throbs. Last year after getting holiday cards ready, my hand refused to cooperate for about 24 hours. Any movement caused pain." – MaryLynn

"The initial symptoms were extreme pain in both hands and feet. I couldn't lift or touch anything at its worst, and I could barely walk without hobbling in pain.

The 'hidden' symptom was (and still is) crushing fatigue. I describe it as like being hit by a 'flu train.' I can be doing fine and going about my business, as usual, but then suddenly, I'm hit with a wave of exhaustion. Sometimes all I can manage is to lie down and close my eyes. I ache all over and feel cold, very like having the flu." – Greg

You don't have to manage your PsA pain alone

In our Psoriatic-Arthritis.com community, you don't have to say a lot. We understand the impact this condition can have on a person's life, and no additional explanation is necessary. We are here to offer a safe space of support and ways to get involved and share at your comfort level, whatever comfort means to you.

• Sign up for an account. Bookmark helpful articles to visit later. Follow the patient leaders that resonate with you.
• Consider sharing your story. Your experience should be documented and can help others feel seen and validated.
• Spend some time in our forums, where real community members ask questions. If you have a question, we welcome you to ask.
• Sign up for our weekly newsletter. It is the best way to get emotional support and an updated look at the world of those living with PsA.

Psoriatic arthritis is so much more than joint pain and so much more than a diagnosis. Here, we offer a place for you to show up exactly as you are.