The story of Emily
I used to go to hot yoga every Friday night after work; 90 minutes in a 105 degree room with 40% humidity. It was my happy place. Then I would go home and suffer from crippling muscle cramps in my legs that would last up to 30 minutes. Not so happy. I tried every suggestion: drink more electrolytes, take magnesium, take calcium, take potassium, hydrate more. Nothing worked. Eventually, I chalked it up to aging and suffered through it. One time I woke up from a nap, did that full-body stretch that comes naturally and both legs seized up so harshly, I leapt out of bed to walk it off, and instantly blacked out. That should have been a sign something wasn’t right, but it only happened the one time so again…I ignored it. I also ignored the salt cravings because my GP said I could eat all the salt I wanted since my blood pressure was low. The cramps went on for years before November of 2014, when I went to Nepal for 10 days. My group went hiking and I just..couldn’t…keep…up. I was mystified. I lost two pant sizes while I was there and came home with a deep tan.* It was November. Fast forward to 2017 and 2018 when I had 3-week bouts of what I thought was food poisoning. It wasn’t. I lost 15 pounds in 3 weeks without trying. Through it all I kept working out, feeling low-key terrible and wondering why I couldn’t build any strength**. I grew strangely addicted to pickles and V-8 juice***, foods I had never liked.
At the time I was enrolled in a Clinical Laboratory Science program and set out to figure out what was happening. I suspected my symptoms were related to low cortisol. Eventually, I went to an Endocrinologist who confirmed I had Addison’s Disease, or Primary Adrenal Insufficiency. I don’t make enough cortisol or aldosterone, hormones that are essential to staying alive. I require medication several times a day, every day, and will for the rest of my life. I feel fortunate that my conditioned can be managed by medications and that they are relatively inexpensive. I still have symptoms because hormone replacement is a moving target. And I still do hot yoga and 20 mile bike rides during the summer even though it might mean I’m lying on the couch for the rest of the day. All things considered, in the world of Rare Diseases it could be a lot lot lot lot worse.
Symptoms of PAI include:
*skin pigmentation, **muscle wasting, and ***craving salty and acidic foods