The Prednisone Diaries


You know you want me.

First thing you need to know is this: I am a relatively healthy old lady. At 63, I am still pretty spry, healthy and hearty. There are few things in life that I can’t do because of my health.

Got it?

But. I do have stupid, annoying, aggravating Fibromyalgia. I was diagnosed about 10 years ago, after being told that I didn’t have Zika, West Nile, Lyme Disease, Lupus, Rheumatoid Arthritis, cancer, IBS, Epilepsy or anything else that would make me run screaming into the night.

Instead, I was told, I have a pretty common autoimmune disease that will make me tired and achy. And will keep me awake for about two months in a row. And will make my thinking resemble a big bowl of tapioca pudding.

But.

I am very very lucky. Once I was diagnosed, I was put on a dose of Cymbalta. This anti-depressant eased my pain, helped me to sleep, cut down on the famous fibro flareups and even made me less cranky.

Better living through chemicals!

However, ten years into this experience, I find that every now and then I have a big old fibro flare up. It can come on slowly, with just an extra pain in the neck (not kidding) and a general sense that I’d be better off is I spent a day in bed.

Which I have NEVER DONE. Ever.

Still, there are days when I find that the past three weeks of endless motion, action, socialization, gardening, shopping, cooking, visiting and schmoozing have left me in a fibro funk.

That’s when I reach out to my wonderful primary care doc. I send him a message on our Patient Portal. “Ruh, roh.” I type. “I’m having a bad flare up. Prednisone?”

He knows me. He understands how this works. He sends in the script.

And this is where the fun begins.

Prednisone is my savior and my worse enemy, all at once. Let me give you an inside view.

DAY 1: “I can’t move. I would love to get up and go pee, but the bathroom is so….far…away…..” The kids arrive. I say, “What a great day for movies!” Even thought its 75 degrees and sunny, I canNOT get up from my chair. I manage to feed them and change the diapers, but that’s it. I need some medicine.

DAY 2: I take my 60 mg of prednisone. I slump into my chair, coffee cup in hand. One hour later, everything still hurts, but I feel a faint buzz in my skin. It’s a quiet day, but at least I manage to turn on music and put the kids into glittery costumes to dance. Dinner is leftovers. I sort of clean it up.

DAY 3: Another 60 mg down the hatch. My neck and back hurt, but the rest of me feels ok. I serve a nice home cooked breakfast. I’m hungry, so I join in the feast. By noon, I’ve done two loads of laundry, swept the floor, exercised the dogs and cleaned the kitchen. On to lunch (homemade soup….yes I ate some) then books, then a nice dinner. Early bed. Slept great!

DAY 4: 60 more milligrams of Prednisone. I eat a huge breakfast before the kids even arrive. By the time they get here, I have pancakes, fruit, cereal, juice and muffins on the table. I sing while they eat and I sing while I clean it all up. We play outside. I manage to weed the veggie garden, prune the lilacs and fill the kiddie pool. I feel great! So much energy. Dinner is delicious and entirely home made. I eat more than my husband.

I get myself to bed at a reasonable time, where I toss and turn for 3 hours before finally falling into a restless sleep.

DAY 5: I wake up at 4. I take my medicine. By nine, I have had breakfast, made the kids meal, made us all lunch, organized the silverware drawer and polished my grandma’s silver. The day is full….even though the kids would like to rest, I keep us all outside, walking through the woods, hunting for bugs, gathering leaves, pulling up clover. I teach them all how to find the best dandelion leaves for salad. OK, the baby is only two and the older one is not yet four, but we get a lot done. After lunch, I get everyone to create a collage of nature’s treasures. They cry a lot, but the art is very cool. The kids go home at five, and I whip up a fabulous home cooked meal for the hubby, who enjoys it thoroughly. I get to bet around midnight, but I can’t fall asleep. I’m trying to calculate how many ants I have removed from the sink in the past week.

DAY 6: Down to 40 milligrams. Who cares? I hate everyone by now. Everytime one of the kids frowns, I scowl right back. I eat breakfast. Then I eat all the leftovers. I eat a few snacks. Then I snarl at the kids because let’s face it; if they didn’t leave food on their plates, I wouldn’t eat it and I wouldn’t be so FAT, now would I????? We do puzzles, we eat lunch (really????MORE leftovers?????) Paul comes home for dinner, which I slap down on the table. I drink some wine. I drink some more. I eat my dinner. And Paul’s leftovers. I go to bed. Hahahahaha. I am still awake at 5AM. I hate everything.

DAYS 7, 8 & 9: Why do I need this stupid medicine anyway? NOTHING hurts. I have been awake for a year. My hands are shaking. Is there any more cold pizza? The kids are handed a bunch of paper, some markers and a few glue sticks. I retreat to the kitchen, where I pretend to make lunch while eating all the croutons in the cabinet.

Slowly, slowly, the prednisone is reduced. Finally I am down to a mere 20 mg, and I start to find myself again. I manage to cut myself down to 4 eggs and two english muffins for breakfast. I remember how much I love the kids. I am able to calm myself down enough to read a few books to them. Dinner is pleasant again. I am able to sleep. A little.

And it finally winds down. The flare up is over. I feel fine again. I feel like myself. If the past is any indicator, I won’t have to go through this nonsense again for at least 4 months.

That should be enough time to shed the 15 pounds I gained while getting better, right?

25 thoughts on “The Prednisone Diaries

  1. That all just sucks doesn’t it 😦
    I know so little about fibromyalgia. I do remember, perhaps before there was a definitive diagnosis, that this was often thought of as one of those “all in your head” issues.
    I’m sorry the choices to manage when things get bad seem almost worse than living with pain and fatigue.

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  2. In my early days of IBD – THE first 10 years, I was on and off prednisone appt HUGE doses. I still have images of everything that was on a plate in front of me that I did not eat.

    Yay to you for getting good stuff done!

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  3. Argh, the necessary drug that is part demon! My husband also has an autoimmune disease & occasionally has had to go on prednisone. It certainly has helped but the side effects can be brutal! Good to hear you are feeling better.

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  4. I hate prednisone – except the part where it works – other than that, nasty thing.

    and 15 pounds in 4 months? I did that last summer. Actually I did 30 pounds in two months, but I found having oral surgery and not be able to eat anything for a week works really better than most things.

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    • I am amazed at how many people take this miracle/horror drug! I was up at five this morning (three hours before my alarm) and found myself cleaning things I hadn’t even known I owned…..Yeesh.

      Liked by 1 person

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