I know...another whine. But it's really not. It just another day in the life of a "Cushie". A (hopefully) cured Cushie. I woke up this morning with my shoulders hurting so badly I could not manage to get out of bed. No strength, lots of hurt. My left shoulder started bothering me last night but I shrugged it off ‘cause I’d carried in groceries and done some major house-cleaning. Ok, major for me, but probably not for you white-glove folks. Thankfully, none of my friends own white gloves.Back to this morning. Since my surgery to remove the pituitary adenoma which caused my Cushing's Disease, I have been adrenally insufficient although now at 18 months out, I am producing some cortisol on my own. But, I have had enough bouts with adrenal insufficiency (AI) to be prepared. My good friend, Linda, told me to be a good Girl Scout and keep cortef (hydrocortisone, the replacement I take when I don't make enough on my own) beside my bed at all times. I do. Therefore, I was able to reach over and take a dose. What would be non-effort most of the time was tough this morning. Just reaching. Frankly, I was waiting on my merit badge to put on my sash after that.
Ok...so what does that have to do with the legs? Just bear with me. The pain moved down the course of my body. The other time I remember this progression was when I "crashed" after surgery and my cortisol level fell 28 points in a very short time. Yep...that hurt. And I don't mean crash as in falling. I mean my cortisol level crashed. I was sore for days.
So, it took me 2 hours to this morning to be able to function. And later, I had to take more to stay functioning. I was hurting, cold, dizzy, and my ears were ringing.
Just to be safe, since I have bouts of hypokalemia (low potassium), I took extra potassium (prescribed). I took ibuprofen. Nothing worked except cortef. It eased things. I have been able to wean down, for the most part, to 5 mg of cortef a day. Since this sinus infection, that hasn't been so. But I thought I was on the mend with that and haven't had to take as much the last couple of days. I guess it caught up with me. As we jokingly say in the Cushie community, I overdrew at the cortisol bank. I guess.
That's the problem. It's a guessing game. I think that's what happened. Since I've had to dose extra twice today to make it through the day, and that is all that has helped with the pain, it makes sense. Short of going to the ER to have bloodwork done, I really have no way of knowing otherwise. I did/do have symptoms other than the pain. I'm cold, and was freezing at an outdoor reception in 90 degree heat today after going to a wedding. My face and head have hurt. I haven't really been nauseated, but I have not wanted any food, except I've been craving salty foods. That's atypical for me unless I'm AI. I even passed up the buffet and wedding cake!!
I feel like I've been run over by a Mack truck. Flu, you say? That's exactly how my endocrinologist described how I'd feel when I started into AI.
For more information on AI, see the following links:
911! Adrenal Crisis, Addison's/Adrenal Insufficiency
Adrenal Insufficiency: What Pharmacists Should Know
Drugs and the HPA-Axis
Guidelines for Stress-dosing
Life-threatening Electrolyte Abnormalities
Anterior Pituitary Hormone Replacement Therapy
Now, my arms and shoulders hurt again....
Where's the cheese??
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