Update April 2010:
To start at the beginning of my symptoms and diagnosis
A little of my story:
I am 51 and My story of cushings started about 13 years ago. Firstly with slow weight gain, by the time i was diagnosed 3 years ago 2007, i gained 40 kilos (reached about 110kilos).
My very early symptoms was high blood pressure, weight gain, back ache, very low iron. Xrays on back showed digeneretive bone disease and disc bulges, so for the following 10 years they put all my symptoms as my back being the problem.
Fast forward to November 2006, i looked like 9 months pregnant, moon face, red face, buffalo hump, thin skin, uncontrolable blood pressure, woke up every morning at 3am, bruised without bumping into anything, small red dots on my arms would come and go, back ache so bad i was taking about 8 panadeine forts a day as i was still working, brain fog, poor memory, stuttering, could not squat and get up, my walk was a shuffle and then started the chest pains.
The chest pains were gripping, when my friend found out she rang the docs where my mum goes. They rang me at work and asked me to come in immediatley. I went but with a struggle as i had enough of doctors.
This was a new doctor there, all i said i have been getting chest pains. He put me on a ecg and the next i know he rang the ambulance to take me to hospital to investigate it further. I freaked out, as i told my boss i would be gone for only an hour.
At the hospital, i was checked for heart attack, stroke but all came back fine. Then they did a chest xray and the result were chronic chest infection. I was released and told to see my doctor the next day.
My nice new doctor gave me antibiotics and got me to do a ct of chest after the two weeks of anibiotics.
Well, that's when they found my tumor on the left adrenal galnd........My doc rang me that night at home and said something about having a tumor and got me to come in the next day.
This new doctor started to explain how many people have this tumor and it doesn't do anything......By then i was in a daze and really tired, so all i said is that why i have a bloated stomach. He looked at me and asked to lift my shirt. Then he mumbled the words Cushings, and got me to do some blood tests.
After he got the blood results he again rang me at home and got me to come in. He gave me a referal to an Endocronologist and many more tests Cushings was confirmed. It took another 6 months before i could get opperated on, because the first Endo was iffy, then the second Endo was slow to organise anything. So it took 3 Endo's till i got my opp.
June 2007 i had the left adrenalectomy and all went well. I was put on 40mgs of hydrocortisone. The next month i was told to wean by 10mgs and every few weeks................This was a big mistake, i could not move from muscle and bone pain, my muscle s felt like they were tearing away from the bone....Saw an new endo after 4months and he put me back up to 50mgs.......I was misserable and wanted to dye by this time.
My weaning from then on was really slow, 5mgs every six weeks, then i could only wean by 2.5mgs every 4 weeks. It took 17 months to get off the steroids.
In all that weaning time i had lots of muscle pain and bone pain. For a good 7 months i could not sleep more than 2 to 3 hrs a night. It was a night mare. I had no strenght.......Before this #@$% horrible disease i was fit as fiddle, on the go all the time, had 3 kids and a bussiness.
The sleeping got better and better, the muscle/bone pain is gone (but just recently i have been getting pain in both arms, doc is investigating it now). Weight loss 40kilos, hump gone, red face gone, don't really bruise now, stuttering gone, i walk normally, and can squat and get up........So it does get better.
OK, no holding back.......in between this weaning i have been diagnosed with fibromyalgia, pancreatits, Hashimotos (hypothyroid), arthritis in colar bone, back, elbows and knees.
For the last 4 months i have been getting weaker by the day, then got sharp pains in the stomach radiating to the back after eating very little. My doc orderd a Gastroscopy. They have found i have active chronic gastritis, infalmation of the stomach and Helicobacter pylori ( a bacteria).....I was given Nexium hp and i felt my energy came back after 2 days of taking the 2 antibiotics and nexium.
Now all this is better than i was with Cushings and currently feelling good