PSA: Psoriatic Arthritis = PsA
Updated: May 4, 2021
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The irony of having a little-known disease which is known by the same acronym that means "Public Service Announcement" pretty much sums up my entire experience with PsA.
I'm sure that by now, everyone has seen or heard at least one commercial that has made reference to Psoriatic Arthritis, but when I tell people that's what I have, very few people have any idea what that even means.
I'm not a doctor, so I am in no way giving any advice or diagnoses. I'm simply keeping track of my personal experience with this ridiculous disease. I hope someone finds commiseration in my experiences. I hope someone who has been told there is nothing wrong finds a common thread, and perhaps some new terminology to take to the next doctor's appointment. I've been there. I'm still there. And I literally, and figuratively, feel that pain every moment of every day.
Before I get too in depth about my own treacherous journey with PsA, I feel the need to first explain what it is. Most adults are familiar with the physical manifestation of Psoriasis: red, dry, scaly skin patches that occasionally become open sores on the skin. Common areas that are noticeable are elbows and knees. When that's all you see on a person, it's a fairly mild case of Psoriasis, or they've been able to get it under control with medication. Those scaly patches that are visible on the surface of the skin happen when the skin cells become inflamed, and the body's immune system attempts to kill those cells, causing the skin cells to go into overdrive producing more... and those are inflamed, and it's a vicious cycle. The skin then builds up into plaques, which are the red, scaly patches. They itch. They hurt. And they are embarrassing. I mean, imagine having to say, "No, that's not a skin lesion akin to flesh eating bacteria, that's just my psoriasis acting up again." Yeah. That's annoying.
So the first part of PsA is explained... sort of. Arthritis is also pretty commonly known for the inflamed joints and pain due to the wearing down of the cartilage. Well. Putting those two together kind of makes sense that Psoriatic Arthritis would mean a person gets flaky skin patches and pain in joints, right? If only it was that simple.
Both Psoriasis and Psoriatic Arthritis are autoimmune diseases. Psoriatic Arthritis is an extension of Psoriasis, meaning this type of arthritis is present in people who have the autoimmune disease psoriasis. Now. Do I have these weird patches all over? Not really, though I'd probably claim dragon status if I had scales everywhere. Instead, I have large chunks of dead skin cells constantly shedding from my scalp. (Yay for thick hair that hides a lot of it!) I actually do have scales and red, itchy, painful patches on my scalp. Some of the scalp plaques have gotten to the point where I now have bald spots. (Again, yay thick curly wild hair that hides it!) The flakes that shed from my scalp can range from dandruff sized little specks to 5mm hunks of dead flesh that can be pulled out with a fine toothed comb. (Aaaaaand that thick, curly, wild hair is not good for this part.) Take into consideration that dust mites feed on the dead skin cells that we shed, and the fact that I'm highly allergic to dust mite excrement, I'm sure it's not hard to imagine how badly this sucks for me.
(Yes, when people say they are allergic to dust, it's really the poop of dust mites that causes the allergic reaction. I'm not kidding. I wish I was.)
So anyway... I have gone through several vacuum cleaners and carpet scrubbers, not to mention air filters. Check out the Recommendations category of my blog and see which ones I've had the most success using. You know that whole mask mandate battle where people claim masks do nothing? I beg to differ... actually, I call BULL on that because I've been wearing masks while routinely cleaning my own living space for years. If masks can prevent me from inhaling and becoming violently ill from the enzymes present in dust mite crap, then surely they would also provide a barrier from other germs and irritants. But I digress...
Where was I? Oh yes, what is Psoriatic Arthritis... Unfortunately, many people have the common signs of "sausage digits" where fingers and toes swell and look like... well, sausages. Here's where it gets "fun" for my case: I had ONE toe that was three times its normal size. I had TWO fingers with one joint on each that was enlarged. Look at the photo I took last week to show off the gorgeous poison ring I scored from Z&Z Jewelry on Facebook. (Isn't that ring awesome?) You can see how odd it looks to have one of the finger joints inflamed. And my index finger is permanently twisted and crooked - see it? Yes, the top half of that finger twists to the left, and from the middle knuckle down, it twists to the right. I'll explain more in another post, but that's because I have the most severe form of PsA called Psoriatic Arthritis Mutilans. While it sounds interesting, I assure you, it's not.
Other than that, I had no signs of anything. It looked like I had stubbed my left big toe and smashed a few fingers somehow. Oh, how I wish the first rheumatologist I had seen actually listened to what I was saying; I'd likely be in full remission by now had it been detected and treated early on. Instead, it took a very long time for me to get the correct diagnosis and begin treatment.
Psoriatic Arthritis is the systemic inflammation of cells in the body. Think about this. Cells in the body are inflamed. My immune system then sees these inflamed cells as being a threat and attacks the cells. The problem comes down to this: my immune system identifies inflamed-but-otherwise-functional cells in my body and destroys healthy tissue while trying to destroy those pesky inflamed cells. My immune system is trying to destroy inflamed cells throughout my entire body.
Let me say that one more time, in case you missed it: My body is literally trying to kill itself.
Does it hurt? YES. Some days, I wake up and it takes so much energy to get out of bed and stand upright that I need a nap about an hour later. No amount of coffee can keep my eyes open. (Well, the fatigue mixed with uveitis associated with psoriatic arthritis makes my eyes get that sandman feeling, but more on that later.) The pain is constant. For some people with osteoarthritis (the "normal" kind), sitting still, using ice or heat, and taking NSAIDs helps. That's not the case with PsA. As I sit typing this, my hands are actually doing alright today, but my right knee feels like someone is stabbing a spike right through from one side to the other. It's elevated, there's no pressure or use of the knee right now, but there is this constant pain because my immune system is trying to kill inflamed connective tissue cells in that knee right now. And there is no rhyme or reason as to which part of my body will be inflamed on any given day.
So... if you're still reading about this whole PsA thing that has consumed my life, I hope you don't also have uveitis because by now, you'd have had to stop and use the eyedrops, if you're fortunate enough to have a prescription for them! In my next post, I'm going to explain how I knew something was "wrong" and go into some detail about what kind of symptoms I had that were missed and misdiagnosed for literally 20+ years, even when I said over and over, "I KNOW something isn't right." I was right. The diagnoses and treatments weren't. If any of this sounds familiar, you'll want to subscribe so you can be alerted to when I post the continuation of my crazy adulthood dealing with this PsA disease.
In conclusion: PSA: I HAVE PsA. And it's about time that someone speak out and discuss this all-too-often un- and misdiagnosed autoimmune disease. That someone may as well be me.