Cushing's Info

I'm 21 years old and was earlier this month told that I may have Cushing's. This is a story about all the different symptoms I've had over the years. I know that is is really long, but I'm just really looking for some answers and hoping someone can try and help me. Thanks.

Since I hit puberty at age 11 I have gained tons of weight. While I was always slightly chubby as a kid, by the time I was 13 I weighted 200 pounds. Now at 21, I weigh 315-320 and for the last 4-5 months have been at that weight. A lot of weight is focused in my mid-section and hip area with strech marks that vary in color from my natural complexion to a red-purple color. I have what they call the "buffalo hump" to the point I have to pull my shirt down off of it because it makes my shirt ride up quite a bit. Also, my periods have never been normal since I started getting them in 1999. I can actually remember I got my first one on Jan. 1st, because it was Jan 1st and exactly a month and a half after my 11th birthday. They are so painful that I can't even walk completely upright due to being so bloated and my joints (which already are not good) get so knoted up. Literally, every joint from my toes to my shoulders  feel almost like they are going to crack into pieces. In fact, almost every day when I go to stand up or sit down my knee, shoulder, or ankle will make a popping sound at least once. Even with my left hand, I can barely sign my own name without my hand cramping and having to stop for several minutes. Because of that, I couldn't keep up with my classes and the only reason I passed some classes is because I passed my state's end-of-year exams or having to read the entire textbook on my own.

In addition, I've had really bad fatigue. Most days I sleep 10-12 hours and still I wake up only slightly less tired then when I went to bed. I want to go back to bed, but can't because there's only so much you can sleep, no matter how tired you are. The fatigue really started when I was high school, where I often couldn't sleep at night and often would get 3, maybe 4 hours of sleep before heading in to school. There I would often sleep in at least one class a day, then go home and sleep for several hours and wake up. Then when I tired going make to bed, it would often take me up to four hours to go to sleep. The best sleep for some reason I would get is the sleep I got from the nap I took after I got out of school. Today, it often very difficult to actually fall asleep and stay asleep for more than 3 hours at a time. I often get up to go pee and get a water, then go back to bed. This can happen up to four times a night.

Yet, another problem I have is drinking tons of water every day. I often drink up to 16-18 bottles of water that are each 16.9 ounces each. This all started back in December 2005-Jan 2006 after I got hit first my a really bad case of the stomach flu, the regular flu, and then a cold. The three months that it took me to get over them left me with my tongue feeling like it is getting pricked with pins and needles. The best way to describe it is that it feels like your arm waking up after you sleep on it most of the night. Only, it never goes away and that it's your tongue. Drinking the cold bottled water helps better than warm or cold tap water. Now, if I don't have a sip every few minutes my tongue starts feeling worse and I start to get a headache (or worse one if I already have one). I've told this to many doctors and they tell me that I'm diabetic, which I've been tested for many times over the years. I've done EVERY test for diabetes and they come back in the lower end of normal (lower 80's). I occasionaly use my mom's testing strips for her diabetes just to make sure anyway. They then tell me I'm crazy for drinking that much water, even after I tell them about the sensation on my tongue. No one can tell me why my tongue feels this way, not even a suggestion beyond "being crazy."

Yet another issue is headaches. I have a headache basically every day that are right behind my eyes and leave them very tried and unable to concentrate on anything for more than a few minutes. I also suffer from tension headaches which cause me so much pain that I almost want to die. They cause my nose to start running and eyebrow/eyelid to drop to the point where it is noticeably lower than the other even if I don't have one at the moment. So, my right eye looks a lot smaller than my left eye because the brow is droppy.

Lastly, I've had I call "odd incidents". Here is a short list:

1) There were two incidents where I've had such lower back pain and nasuea that I could barely eat. The first time was in March of 2004 and the next time was in October of the same year. The first time was when I went to Disney World in Florida for a 5-day school trip for the choir. We took the bus down, which took about 12 hours when I started getting a lot of lower back pain and not feeling hungry at all. By the next day, I forced myself to eat a slice of pizza and that is all I had to eat for the rest of the trip. I didn't ride any rides or anything because I was in such pain. I didn't complain because I chucked it up to being in a warmer climate, sitting in a bus for 12 hours, and a lot of walking. By the time I got back, I went to the ER where they said some kidney stones that would pass. They did, but they came back again later that year and they said trhe same things. I've had similar pains over and over again (every 2-3 months) since then, but I've not gone back since I figured they would just tell me the same thing. I'm currently having that pain again and I can barely sit upright to type this.

2) This past Janurary, I had my first UTI which I waited 3 days to go get checked out at the ER. I waited so long because I knew it was my appendix that was causing my stomach pain as I was born without one. The doctors at the ER wanted me to do a lumbar punture to check for meningitis, but I said no as from what I've heard about it, I'd probably already be in a coma or dead. They had me give a urine sample, but that it had turned up nothing, so they thought I had a sinus infection. I didn't buy it, as I have chronic sinusitis and have gotten many sinus infections before and it didn't feel nearly the same. However, I was tired so I just took the amoxillian they gave me and went home. Several days later, I still didn't feel any better , so I went back and they took another urine sample and this time I did come back positive for a UTI. They had to put me on I.V. antiboditics and I.V. fluids because I was dehydrated for several hours and then sent me home with the right medication this time.

3) Skin and hair problems are also a concern of mine. I have a lot of hairs on my upper lip and on my  chin to the point I have to shave. In addition, I have hairs on my chest and stomach. Basically, I have a line of thick hairs from my belly button on down aka a "happy trail". Several years ago, I had two scale-y patches on my left foot. One just below my big toe and another on the inside of my ankle that were itchy. I had them for close to a year before they were diagnosed as staph infections and treated with a antibodic cream. Another skin issue is little red dots I have on my chest that have been there for several months that I've no idea what they are. My biggest issue skin concern right now is for the last 8-10 months I've been having these big, painful rashes under my breasts. They've been on and off, but for the most part on. The rash is bigger than one my hands spread out and I can't touch or move without being out of breath with pain. It's feels like heated pins and needles stabbing you again and again while your skin is being twisted. I have some major pimples on and beneath my breast at all times that are just hideous. The at least twice as big as ones I've ever had on my face.


That is basically all of what I can think right now. I'm just so furstrated with doctors and everything because it has been so long with all these issues. I'm looking to see if there are any with any of the issues I've had and what their experiences have been.

Thanks,
Tabatha

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