Hi there folks, just joined up yesterday after, well, I’ll get to that.
I’ve only been suffering with PsA for about a year. January of last year my right hand started to hurt. Just mild annoyance at first, maybe a 2 or a 3 on the pain scale I use. Little more than a twinge, and, considering the fact that I’ve gotten used to minor pains and aches at 36, I kind of brushed it off and assumed that, like all other pain I’d been having, it’d go away pretty soon.
See, until about June of last year, I didn’t really take care of myself. I wasn’t active, I ate a whole lot of crap, was overweight, and so, random aches and pains were just par for the course.
Only, it didn’t go away, of course. It started to get worse, and, to borrow a Pink Floyd lyric, my hand started to swell up like a balloon. It became difficult to do anything with the hand, and considering that my day job has me sitting in front of a computer typing and such, work became slow and ponderous to do, as opposed to how it used to be. I pride myself on being good at any job I’m given, and now it was difficult.
Doctors appointments made, of course, and my doctor at the time, a creature of immaculate tact, immediately frowned upon checking the hand and said “well, that’s not a good sign.” X-Rays, blood tests, but no real information given on what it could be. Just “that’s not a good sign.”
X-Rays come back negative - there’s no damage to show that it would be any standard version of arthritis. Blood tests come back positive for inflammation and infection, but at very low levels, not enough to cause major concern.
Thankfully, my doctor, despite having the bedside manner of a dead chicken, told me it could be reactive arthritis, and referred me to a specialist. Take these drugs, let’s get your blood tested again, and see if we can rule something else out while you wait, thanks and take care.
Drugs weren’t covered by my insurance (an NSAID and stomach calming agent in one, can’t remember the name), so after a few days of back and forth I get a different prescription. Blood tests come back negative on the new stuff, so back to the waiting game. Specialists are busy, and I had a two month wait time before I could get in to see the guy.
During that time, my hand got worse. The NSAIDs did little to nothing for the pain, never mind the swelling and reduction in motion. My right shoulder decided it wanted to get in on the action, and started to dully throb. My right hip decided that it was bored and came along for the ride.
Specialist visit finally happens, more X-Rays, blood tests, the whole thing. Only on this visit something interesting happens that, I’ll be honest, I wasn’t even aware of.
“Does your back hurt?” the doctor asked me. “No,” I replied, “no more than usual. I’ve had back problems for a few years, but nothing major.” Poked me in the lower left back and I let out an involuntary grunt of pain. “That doesn’t seem like no pain,” he said.
“Any skin issues?” he asked. “Minor,” I said. “I get what has been diagnosed as eczema in my ears, on my scalp and on my chin.” By diagnosed I mean I saw a doctor a few years ago who basically said “yeah, it’s probably this. Use this cream. Don’t worry about tests.”
I’ve got good luck with doctors. Charmers and hard workers, they’ve been.
So, specialist Doc takes a look at my scalp, chin and ears, says they’ll need to wait for the results, but it’s likely spondyloarthropathy, specifically Psoriatic Arthritis. Pitting in my hips from the X-Rays bear this out, as do the results of the blood tests.
Try out another, stronger, NSAID with a short course of steroids, no dice. Pain doesn’t go away. Get’s worse. Limping starts, as does a loss of strength and a difficulty in getting up if I don’t use leverage. I don’t know those last two until I get back to the doctor, I’ve been purposefully taking it easier on myself.
Diet and exercise regime I start halfway through this nonsense, started because a) I’ve been talking about losing weight for decades and b) it’s got to help a little bit with this down the road goes halfway on hold. Exercise isn’t possible. Walking is difficult to do. Getting on the elliptical isn’t even a thought I want to consider.
Back on steroids. Long term course at this point. Prednisone, start at 5 a week, then 4, then 3, and so on. Start taking Methotrexate once a week, Folic acid every day, and let’s get regular blood tests to make sure your liver isn’t going to pack it up. Throat starts closing up due to reflux from one of these things, so regular doc puts me on acid reflux meds.
I’m 36 and now I have a weekly pill box divider. My mother has one. She got hers at 60.
Immunosuppresants start to work, for a time. Exercise happens again, slowly and carefully. Onto a exercise bike every morning, recumbent in order to help with posture and pain gotten just from sitting.
Then they stop again. Walking is almost not possible, every step is a new adventure in grimacing and intakes of breath. Right arm is used as little as possible. Reaching for or picking up anything heavier than a coffee mug is a recipe for agony. My dog snapped at my face at one point, and due to the way I was sitting, I snapped away from him and screamed in agony as my shoulder pivoted in its joint.
Increase in Prednisone has helped, but… I’m not looking forward to that level of pain again. Time between flares has been shorter and shorter each time. Pain never really goes away, just goes back down to a manageable 2 or 3 rather than a flare level of between 5 and 7.
It’s not the worst thing, I keep trying to tell myself. There’s a chance of, if not recovery, then at least the semblance of a normal life to be lived. Then I wonder when the next flare is coming, and I can’t get past that. It’s not the worst, but it is the worst. There’s people worse off than me, but I live in here, and can’t think of anything but, can’t get past it.
Depression has been lingering around the edges, wanting to get it’s claws into me, but I’ve been doing what I can to distract myself and not let it in. I talk to my wife about it, but while see has some issues that cause her to relate somewhat to this, she doesn’t really understand chronic pain. Few people do.
That’s when I decided to look for a place like this. Somewhere I could spew out the thoughts that are coming into my head, and get some help and support. Whine without being judged. Maybe provide that to others too.
Good lord, that was a long one. Could’ve just said “hi, I’ve got PsA, happy to meet you all.” Gonna pretend that’s what I did, but still hit create topic.
Look forward to getting to know you guys while we’re on this awful, awful roller-coaster together.
)
HAHA TV ads for meds!!! Yes, beyond crazy!!! Luckily, I can DVR most shows and watch them later, skipping the ads!