There are days, and today is one of them, when I just want to crawl in bed and ignore the pain, my workload, and the world in general.
Backstory: Have had plaque psoriasis for 30 years.
Then for two months in 2012, a few months in 2015, and several months in 2018, I had severe joint pain and indescribable fatigue. Like many of you, if there's no bone protruding through flesh and I'm conscious, I'm not going to the doctor. But in 2018 I got fed up and went.
They tested me for Lyme disease and a host of other things. All negative, though he treated me for Lyme disease "in case it's a false negative." Because 14 days of intense antibiotics is just so healthy ...
I was also having a bad case of psoriasis on my FACE (insert expletive here) so got a referral to dermatologist. She asked if I was experiencing any joint pain or fatigue, and when I said yes, she said I most likely have PsA and need to immediately schedule an appointment with a rheumatologist. Did some research and wow! That explained EVERYTHING.
Unfortunately, my primary care doc explained that since bloodwork was negative for rheumatoid factor (or whatever it's called), my insurance wouldn't approve.
I could write five pages about all the hassles and frustrations of dealing with primary care docs over the past five years, but you've all been there.
I live in a rural area and finding a rheumatologist has proven challenging. Finally found one, but no longer have insurance, so it's a $300 initial visit charge, and $150 for every visit thereafter - since I'm self-employed and the economy is kicking my backside, it's going to have to wait a little longer. Yes, I know, it's only going to get worse, but it's on the list for this year.
In the meantime, I'm medicating with Ibuprophen and a muscle relaxer that doesn't make me loopy, as needed. It sometimes takes the edge off.
I'm learning my way around this bit by bit, though when I have a good stretch where the pain diminishes and I have plenty of energy, I half convince myself it's all in my head. Or maybe I just had some bug and it's gone now. Or maybe I'm not getting enough sleep or not drinking enough water or not taking enough vitamins or not eating right, or, or, or.
I needed to move my office this weekend and even though I had help part of the time, and even though I tried to pace myself, I overdid it and I'm paying for it today.
I didn't get it finished, and I have a ridiculous workload - both of which have me extremely stressed out. The meds aren't helping - my elbows, right thumb and lower back are really sore today, I'm exhausted, and it's all I can do not to put my head down and sleep right where I sit. And on days like this, I have to accept that even without an official rheumatologist diagnosis, this IS real, it ISN'T going to just go away, and I better deal with it.
But I'm still trying to figure out the rhythms of this whole thing. Morning pain - not much I can do about that other than walk it off. Tend to the chickens and fur kids, make the bed, etc.
Morning brain fog - simple tasks like replying to emails or filing paperwork until the brain wakes up.
Joint pain - remembering to get up and walk around every so often (the fur kids help with that). When doing strenuous things, take frequent breaks and don't lift or carry more than necessary.
Fatigue - give myself permission to take a 45-minute nap if I really can't handle it. Though some days that doesn't work either and I finish the bare essentials and call it a day, which just adds to the next day's workload. But why does it seem worse after I eat? Is that a thing or is it just me?
Foot pain - wear ugly crocs when working from home (most days) so the wood floors don't kill my feet. Gone are the days of fun/cute shoes. I've become my mother.
Eye issues - using OTC dry eye drops, but only seems to help with getting eyes open in a.m. Not sure if this is PsA related, vision issues, age issues, or what. Some evenings I can watch TV, others I can't. Some evenings I can read easily, some evenings I can't. Eyes feel like I just woke up - grainy, blurry. Occasional gumminess during the day, but flushing my eyes resolves it - not so much in evenings. Went to doc, was prescribed a gel that made things far worse. At a loss here.
I know there are no definitive answers, and I know I need to get to the rheumatologist, and probably an ophthalmologist, but until I can, is there any way to fight the fatigue? Is it worse for any of you after meals? Any suggestions on over the counter drops or other solutions/thoughts on the vision thing? Any other tricks for managing this mess while working 60+ hours/week? How about getting friends/family to understand when I just CAN'T go another five minutes?
I know this was a long rant. Thank you for listening.