Cushing's Info

I don't even know where to start. I'm 27 years old now and feel like I am 90. Something has been very wrong for years, and I am now finally beginning to see a light at the end of the tunnel in the form of cyclic cushing's.  I've struggled with maintaining my weight my entire life - as a result I became very involved in sports in school - cross-country running, lacrosse, track, and spinning and lifting weights at the gym. It was a great fit for my Type A personality.  I remember always getting fatigued much quicker than everyone else - I won the awards for hardest worker for pushing myself 110% everyday but I was always one of the slowest.  I also ate about 1/5 of what my classmates ate and was heavier than they were. I developed severe fatigue and was repeatedly tested for mono, but the test always came up negative. It was painfully obvious that the crushing fatigue that I was feeling was not happening to any of my classmates, but I had no answers. I started urinating around 30 times a day and it was clear.  I couldn't sleep through the night without having to get up multiple times. I attempted to control this by not drinking any fluids all day long and engaging in extremely vigorous exercise to dehydrate myself.  Only by going to these lengths would I urinate more like a normal person.

Fatigue got worse in college. I would have periods where the fatigue was so crushing that I could not get out of bed for days.  Started getting a lot of infections that I could not get over. Symptoms intensified after surgery for wisdom teeth and appendicitis.  Then came the start of the pain - extremely severe pain that felt like I was being stabbed in the abdomen/sides.  I felt extremely weak and lightheaded.  I couldn't stand up without going black.  I wasn't hungry and lost weight. That first year I had two episodes that each lasted about a week to 10 days.  In between I fully recovered (to my normal fatigued self but without the pain, weakness, and lightheadedness).  Each time I had an episode it increased in intensity and duration, although very slowly for the first 3 years or so.  During this time I also developed a passion for triathlons, and started competing in these in addition to the 1/2 marathons, 5k's and every distance in between.  I was so angry that my blood work always looked perfect that I would continue to push myself in races even when I felt sick.  The difference in performance was startling.  I became very obvious that something was very wrong. I graduated college and felt horrible physically.  I gained 50 pounds in less than 3 months.

The episodes kept progressing over the next few years and I began to see a definite pattern.  I was like two completely people.  On one hand I gained weight when there should have been no way possible.  I know that people say that they exercise 2 hours a day, but I was more active than 99.9% of the population.  I played on 2 soccer teams where the constant sprinting would leave me dripping sweat and purple in the face, 3 hour triathlons, running races, spin classes, the works - I was still gaining weight in my stomach. The only way to slow down the weight gain was to maintain a ridiculous level of activity and eliminate fat, sugar, carbs, and most calories from my diet.  I memorized nutrition labels of the 5 foods on the entire planet that I could eat (tuna, grilled chicken, chicken broth, pickles, and hot sauce). It was torture - I ate plain tuna fish and fat free grilled chicken every meal every day for weeks at a time. The thought of tuna fish for breakfast made me want to vomit, but I did it anyway. When I told people I would blow up from the carbs in vegetables no one ever believed me.  Why couldn't I eat plain broccoli or tomatoes without alarming weight gain? The ravaging appetite was torture.  I probably consumed 500 calories a day and burned off well over a 1,000. And still I could not button my pants and my face looked puffy.  To my credit, I only gained 10-15 pounds each cycle, but it would come on so quick.  I would grow of my pants within 2 days.  I developed insomnia and would be up tossing and turning until 5am.  I never had acne as a teenager and started having severe breakouts over my face and body and getting boils. At first the extra cortisol helped me perform athletically because I began placing in races, but the stomach was tough to get past.  I started having severe joint pain and inflammation and throbbing in the veins behind my knees, which popped out.

Then the strangest thing would happen. Never in my entire life had I lost weight without trying.  My appetite started to dwindle, I developed severe nausea and weakness.  I couldn't stand up without holding on to the wall.  I literally could not stand up for more than a few minutes without feeling like I was about to pass out.  The abdominal pain was so incredibly severe that everyone kept commenting on how I was hunched over/slouching all the time.  My colleagues would tell me I looked terrible and could tell I was in unbearable pain. It was embarrassing because here I was in excruciating pain, I had all these blood tests, CT scans, and MRI's and everything showed that I was completely normal.  I learned to live with the pain and to try to hide it (unsuccessfully).  At least I got to be stick thin without trying.  I was able to eat like a normal person - carbs, fruits, veggies and even dessert and still I lost weight.  Every doctor told me that there was nothing wrong with me so I would continue to force myself to compete in races and verbally put myself down and repeat over and over it was all in my head while running through the extreme pain and weakness. When I felt high I would place in my age group at events, and when I went low I would finish nearly dead last out of races of 800- over 1000 people. My joints ached terribly but the swelling went down during this phase. That’s really when I knew there was a physical problem.  There is no way you have pain that severe and push yourself that hard and feel that bad.  Things progressed to vomiting and nausea so severe I get carsick, plane sick, and incapacitated. Each cycle kept getting worse and worse.

I finally came to my breaking point.  My life was destroyed, couldn’t participate in my favorite activities or hang out with my friends.  I thought I had Addison’s due to the weight loss and weakness and heard about Dr. Friedman.  When tested at that point in time my cortisol came back high - I wasn’t expecting this because I was more concerned about the “low” symptoms and had not heard of cyclical cushings. Pituitary MRI revealed an adenoma, so now I just need another high cortisol and Dr. F says I can be diagnosed. I am performing the midnight salivaries now – some normal, and at least one higher than normal so farm but I am learning when to test by symptoms. I am so frustrated because I feel that I got written off by physicians for being so stringent with my exercise and diet habits.  I have dealt with more insensitive, arrogant, and uncaring physicians than I can count in the past 5 years.  Dr. Friedman was the only one who looked at the whole picture and actually listened to me.  I am just hoping that it’s not too late and some of the effects are reversible.  It worries me that pretty much everyone who posts on here says that they don’t feel any better after the surgery.