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Newbie, fatigue, figuring this out

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.

  1. Hi @Amy68 welcome to our community. We are glad you are here. It sounds like you have been through a lot. Do you know about the National Psoriasis Foundation? They also have valuable information. The fatigue is something we all deal with. Unfortunately, there is not anything that I know of other than rest to help with the fatigue. 60+ hours a week sounds like a lot living with PsA. Does your boss know and he/she willing to cut you some slack? I sure hope so. I'm sure some of my other team members will have more information for you. Vickie W., Team Member

    1. Hi Vickie! I have been to that site and when I was first diagnosed I participated in the mentor program, which was very helpful.
      I'm self-employed and most of the time there's just no slack to cut, thanks to the economy. I'm taking steps to whittle down my responsibilities, and make some big changes that will simplify my life and ease that workload, but it's going to take the better part of this year to get things in place, so at the moment I'm stuck.
      Part of the problem is that I have to sit most of the day - part of my plan is make more time for yoga, and things like gardening and walking that will allow for more activity - but "gentle" activity.
      One issue I need to work on is tempering my frustration - at the things I don't yet understand, at the limitations this has put on me, at constantly feeling like I have to make excuses for why I can't always do what's asked of me when I've always been the go-to person. I know you all go through this and I'd love to hear how you all manage it.

    2. Hi @Amy68. If you participated in the One to One before and feel like it could be beneficial again I am sure the National Psoriasis Foundation would allow you to be in that program again. Tempering the frustration is a hard one to do. We all get frustrated. I tend to try my best to remember my blessings and what I can do not what I can't do at the moment. However, there are times when that is easier said than done. Give yourself grace. You are allowed to feel how you feel in the moment. Sending gentle hugs your way. Vickie W., Team Member

  2. Hi . What a long and frustrating journey. Is there any chance you can at least get a basic level of insurance, something to cover you if your PsA pain ever lands you in the ER? Many people in the PsA community have found some relief from elimination diets and anti-inflammatory diets. Elimination diets help you figure out (over a long period of time) which foods might trigger your PsA symptoms. Anti-inflammatory diets aim to reduce food in your diet that might cause inflammation to worse, like sugar and processes carbohydrates. Here is an article from one of our advocates about diet that you might find helpful: https://psoriatic-arthritis.com/living/diet-does-matter. If you enter "diet' into the search bar in the upper left corner, you will find lots more. Not everyone responds to dietary changes, but it might be worth a try. Movement should help some as well. Can you set a timer while you are working to remind yourself to get up and stretch? I hope you get more ideas from other members in the community. Thinking of you and wishing you the best. - Lori (Team Member)

    1. I understand that feeling that you are slacking off, . We have a hiking trail around our property that I like to walk when I am stressed or struggling with a piece of writing, but I always feel so guilty when I do it. I know it's healthy, but I also know there is a lot of work waiting for me back in the house. My dogs are good for me, too, even though their constant need to go out drives me bonkers sometimes. My husband tells me to work in my downstairs office where I can't hear them, but a part of me actually appreciates the fact that they force me to stretch my legs so much. I am glad you found some energy today and I hope the trend continues. - Lori (Team Member)

    2. maybe we both need to shut down that guilt and make the time to enjoy our walking paths. SO hard to do though, but it would be good for us and self-care is just as important as earning a living - can't have one without the other.
      I get it about the dogs - I have a 3-year-old German shepherd, a cat, and a cat that thinks he's a German shepherd. And chickens. All of which keep me on the move - like you, I do appreciate this. If left to my own devices I'd be writing from sun-up to sundown and while that's very productive, it's not healthy at all.
      Today is a good day - hope the same is true for you!

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