New Here and Feeling Lost
Hi, all. I'm not sure how to start this, but I had my first appointment with a rheumatologist last Monday. My final diagnosis is not certain yet, but I believe PsA is one of the few options left so I am here for more info.
I am 33, and until a month ago I worked produce in a grocery store. I mostly worked nights hauling heavy skids of produce off our trailers and putting the boxes away in our storage for the day people to work to the sales floor. It's pretty physical work, so when I started noticing that my feet were a bit stiff in the mornings, I thought little of it.
That was followed by months of mysterious sprains in my knees that came and went ("nothing serious"😉, and then a visit to Urgent Care with chest pain that was Dxed costochondritis. Since my job involves lifting, I was again told it wasn't serious.
Then one night my hip started hurting - and I mean, it was some of the worst pain I've ever felt. Another visit to Urgent Care, which turned into being sent to the hospital when X-rays turned up no physical injury. The docs told me the only option left for someone my age was an infection, yet my bloodwork turned up only slight signs of inflammation and nothing else, which baffled them. I was finally sent home late at night when all the bacterial cultures came back negative, and they said it was probably a viral infection. Rare, but a viral infection can travel to a joint from another infected area, they told me. I had just started getting a red, watery eye that I thought was a viral infection, so I figured case closed.
Then my eye turned out to be iritis - very stubborn iritis that wouldn't heal with weeks and weeks of high-dose steroid drops. And a painful limp in my right foot turned out to be Achilles tendinopathy and really severe plantar fasciitis, which put me in a cast and then on medical leave. At that point, I started to think something much bigger was wrong, but most people in my life besides my hypochondriac roommate blew this off.
But then the tops of my feet started to hurt on and off and turn red, then my knees, my shoulders, my elbows, my wrists and my fingers. I also developed a purpura rash from my toes to my knees. Some days I felt like I had the flu, but without the fever. The speed of at which everything got worse was breathtaking - a month ago I could still lift boxes at work (although it hurt my feet like crazy) and suddenly now I can barely drag myself from my bed to the toilet. I made an emergency visit to my doc, who sent me to a rheumy. So far, the Dx is some type of inflammatory (seronegative) arthritis, but I am getting more X-rays and tests done this week.
The reason I suspect PsA specifically is that I have had VERY mild lesions on my face and ears in the past that I thought were psoriasis. (It's not eczema, which I have also had since I was a baby, and easily recognize.) But it's never been something I even bothered to get a doc to look at when I had it because it was barely bothersome. So I do not have a solid Dx for psoriasis.
I am feeling immensely lost, because I just don't know where to go from here. The rheumy put me on high-dose Naproxen, which I feel is only keeping me at the barest level of functionality. If I want to even hobble to the corner store (or I have a bad day), I need to bum oxycodone or something from my roommates. Do other people do NSAID/opiate combos? I know of biologics, but I also know it is impossible for me to afford them. Do DMARDs reduce pain?
What level of functionality should I even be aiming to get back? I feel like my time working at my grocery store is done. I don't know right now how I could ever get back to lifting hundreds of pounds of produce and having inflexible hours when I don't know which joint is going to hurt tomorrow or even later today. I'm so mad at myself now for dropping out of university with a pathetic GPA, because I have nothing to fall back on. I have worked retail my whole life. I have no idea what I will do for income now.
I can maybe do ONE "thing" a day (like sweep the kitchen) and that is it. Often I "pay" even for that one thing with hours of agony.
Every day now I just think, "Is this my life for the rest of my life? Do I get anything from my old life back, and when?"
First off, welcome to the forum. You've come to the right place.
Second, your story sounds a LOT like my own, only it seems your symptoms may be more severe than mine were.
Like you, I always had very little in the way of psoriasis. Two two little patches that I never really thought anything of. I thought that to have psoriatic arthritis, you had to have REALLY bad psoriasis. Turns out that's not true. Also, like you, my inflammation markers were barely elevated at all. On the high side of the standard range but still within the standard range. And my first big symptom, much like your own, was costochondritis in my chest. That's when I knew what was going on me with was more than normal aches and pains from weighlifting.
Can I ask you? Did the major symptoms start shortly after an illness like, for example, bronchitis? A lot of times that can be a trigger. It was for me.
As for your diagnosis, PsA can be tricky. There's no marker they can identify like Rhuematoid Factor for RA. My diagnosis was made based on having pitted nails and inflammation that showed up in an MRI of my right wrist.
NSAIDs are usually the first thing your docs will try. Then Metotrexate. And then, finally, a. biologic like Humira. Just over the last two years doctors have been moving to biologics more quickly as they've learned that getting the inflammation under control as quickly as possible is paramount.
How you'll respond once you're on a biologic is hard to say. For 1 in 3 people the first one they try does work. In my case, Humira started working for me the very next day. Five months ago I would have told you that my right hand and wrist were virtually useless. Three weeks ago I went bowling, which is something I never thought I'd be able to do again.
So, no, you're not destined to live a life of pain. Your life won't be the same. Mine isn't. I can't lift heavy weight or run for miles like I used to. My body can't tolerate that anymore. But I STILL lift weights (just lighter) and I still get in aerobic exercise (swimming and elliptical) but I have to do it a bit differently. Your life is going to change BUT with proper management of your symptoms, you should be able to get back pretty close to the life you once had.
The other thing you may wonder about (I know I did) is does this in any way affect your lifespan? It can because you have to worry about more than just joint damage. But it doesn't have to. My mother has rheumatoid arthritis and turns 80 this year with no signs of slowing down. I know since I learned I had PsA I've made a number of really positive changes in my life from cutting WAY back on my alcohol consumption, to losing weight, to eating a healthier diet to exercising more smartly.
You'll need to learn to take better care of yourself but that can actually end up being a good thing. Without PsA I'd probably still be drinking too much and eating like crap.
Hey Sean, thanks for responding!
I have not had any major illnesses this past year. I did have some fluid in my right ear for months that wouldn't clear up, quite painful. But that in and of itself was a mystery, because it developed without my having had any sort of cold or flu to explain it. I've also been horribly stuffed up since January for no apparent reason - it's not allergies (antihistamines have no effect) and the ENT I saw recently claimed he saw nothing amiss up my nose. I had a couple of cysts in my right armpit in the summer, but I have no real explanation for that either EXCEPT contaminated testosterone I was injecting at the time. (It's prescription, I have been injecting it for years without problems but that particular vial was starting to look "off" at the time and the top was a bit ripped from a time I jerked my hand while drawing up. The dermatologist I saw agreed that a vial that had picked up a minor environmental contaminant was a reasonable explanation for two cysts within weeks of each other. I have had no issues since replacing that vial.)
It's just generally been a frustrating year of, "Well, THAT shouldn't be happening to you/this is happening for no real reason."
It seems my rheumatologist is hoping for/still trying to rule out a reactive arthritis. The bloodwork he is sending me for is testing a bunch of things like signs of Hep B or C. Perhaps that is why I have only started Naproxen so far?
I do hope I can get on something with a stronger effect soon. I am personally willing to jump straight to something like methotrexate, because NSAIDs are not cutting the cake at all. I made an appointment this week to see my family doc and update him, and I want to make it clear how low my functioning really is. I feel like that was a big point of disconnect between me and my recent rheumy...I understand he was running an initial assessment, but I filled out a big questionnaire in the waiting room like, "How much difficulty do you have cutting your food?" and it seems he didn't even read it. He just wanted to poke my joints.
I'm not too concerned about lifespan, as my gut feeling has always been that it will be relatively short, and I have already accepted that. Maybe that sounds morbid, but I also have had a similar gut feeling about getting sick like this in my 30s since I was a child, and it has happened...I was not terribly surprised about this, just sad it has been tougher than I expected so far.
I don't drink or smoke, so there is that. I should probably eat healthier, though!
