The current situation is reminiscent of last August. When I just didn't feel good, but I didn't feel bad enough to take steroids.
I couldn't figure out what was wrong.
Then I crashed hard in September and have been on steroids ever since.
It's not the fatigue that's so bad. It's the weakness and the inertia it induces. I feel like a wet noodle. Just flopping all over the place.
The other day I kept the toddler home from school due to the boogies of doom. As it turned out, I was more in need of a sick day than she was.
I couldn't get up.
Couldn't keep my eyes open.
Couldn't get out of bed.
Three hours later, I had managed to make it downstairs and feed the toddler and take a shower. I thought, we'll go to the post office and the mall to get some vitamins and spend some quarters on rides.
I got up.
And sat right back down.
I tried again.
I sat down again.
Hmmm. Maybe I should've eaten something for breakfast.
Maybe I shouldn't skip meals.
Maybe it's pickle time.
Yep. BP is a little low.
Pickle juice tastes good to me now. Sometimes I even crave it. I think I've blogged that before, but I am so appalled by it, I can't let it go. The toddler thinks pickle juice is an actual beverage and asks for it.
It's normal to her.
Oh my God.
We chased the pickle juice with some suckers. I felt mildly better, but not enough to risk going anywhere.
"Mommy, let's go the post office."
"Can't, bean. Mommy doesn't feel good. Sorry."
Hubby burned dinner so I could rest. Somehow my appetite found its way home and I was ravenous, scarfing down over done (bunless) burgers and rutabaga fries like I'd never seen food before.
Today I updosed back to 20mg to see if that will stop the downward slide.
The thing is, I clearly had too much in my system at 20mg and tapering to 15mg was an improvement for once. So why insufficient now?
This makes me wonder if the HPA axis functionality is uneven. Like it isn't strong enough to keep me going for long periods of time. Or it's randomly coming online and then just free falling.
I know with permanent Secondary Adrenal Insufficiency (which is most like what I have) there is some level of cortisol and ACTH production but it's impaired and can fluctuate.
I wish this would end so I could go back to my life. I thought this was going well. It's not.
Should I Get a Second Opinion?
2 days ago
What is the cause of your permanent secondary adrenal insufficiency? Long term steroids?
ReplyDeleteI was on steroids for 3 months and keep having trouble weaning and wonder if my adrenals are permanently damaged.