Psyched Out

For the past four years I've been getting weaker and weaker.

It started out with getting to that serious muscle pain that tells you to quit exercising about ten minutes earlier than usual in my daily workout. I figured I was just pushing myself a little harder than usual. But gradually my workouts got to that pain point sooner and sooner. After 8 or 9 months I just couldn't tolerate it anymore, but I thought it might just be age or something (I was only 38!). It kept getting worse, but I ignored it - I had a more than full time social work job and four year old twins, so the exhaustion seemed understandable. I felt lazy. I was tested for sleep apnea, but didn't have it.

Then one day I couldn't finish grocery shopping, even though I already knew where every resting place in the store was. I sat there crying, feeling like if I took one more step or even stayed standing, I would fall down. I knew there was something seriously wrong that day.

The next time I went shopping, I broke down and used a mobility cart. I felt humiliated, like everyone was staring at me. And I did get glares - I *looked* perfectly healthy but fat. (Now I glare right back - fat people get disabilities too!)

I decided to tell my doctor about the exhaustion again. He suggested we adjust my asthma meds, assuming it was low oxygen levels. A month went by, no change.

For the next 3 years I went to specialists, got tests that all came out normal, and kept getting worse and worse. The thing I kept trying to explain was that I didn't START OUT exhausted, I started with and rapidly regained my usual high energy level. The time between healthy energy and excruciating muscle pain with exhaustion that made me sit down on the floor even in public places got shorter and shorter.

About 2.5 years in, I started having severe muscle pain the day AFTER exertion, just as if I'd been carrying heavy boxes or running 5K's the day before. By 3 years I couldn't stand long enough to sautee mushrooms or take a normal shower. It was (IS) very hard to manage my limited energy because I start out feeling fairly energetic, but quickly tire with minimal exertion.

I switched psych meds in case that was the cause, and lost 40 # in 4 months. I was constantly hot and started sweating a ton, and I have NEVER sweated much. I started eating salt and vinegar chips like they were going out of style and salting my food, which I'd never done - I usually hate salt. I started having excruciating abdominal pain and got my gall bladder out last fall. It took me six weeks to recover from laproscopic surgery, instead of the promised 3 days.

This spring we bought an electric can opener because I would drop the manual one when the burning muscle pain MADE me after a few rotations. My exhaustion level would reach a point I'd only experienced when I'd actually been dying from asthma attacks as a child.

Nobody knew what was happening to me. I was terrified that I was going to die without anyone knowing.

I requested a referral to an endocrinologist, and went to Dr. K who immediately knew that it was SAI when she heard about my 30 years on high dose prednisone and Post Traumatic Stress Disorder from childhood. I also have the classic fat deposit from steroid use called a "buffalo hump." (And seriously, would it KILL them to just say "fat deposit"?) She ordered a bone scan and vit D level, which was 5 out of 60. My bones are fine, thankfully.

Taking steroids isn't an option because they CAUSED the SAI in the first place. Also, because last time I took them I got steroid psychosis. But I can get the vitamin D up where it should be, so I'm concentrating on that. Then I can start the long road toward rebuilding my muscles.