And It's About Time There Was Some Support For Cushing's!
No diagnosis yet... looking for answers.
To start I have always been a prone to be a little chubby though I always had my way of staying thin. I became a distance runner, loved basketball and softball and many other sports. After I had my children I began running again and one week post delivery of my last child I was back out there. This time the little bit of pregnancy weight I had gained started to come off, but then the scale started to go the other way no matter how much exercise I did. I even tried a couple of diets.
I always thought staying thin shouldn't be so much work. I have always been careful about what I put into my body and still eat whole foods and do not do junk foodexcept for one soft drink a day with extra caffine and ginsing to keep me going.
All during the pregnancy my feet hurt and they didn't feel any better after delivery so I tried even harder to lose the weight thinking that was causing my pain. I was 130 before my son and delivered him at 180. The weight came off with some work but steadily went away. My son was 9lbs 4oz and two weeks early. People would stop me and ask me what I was feeding him since he was so big and roly poly.
At the hospital they called him the michilan man. He was very agitated and a difficult little one at times. Before I had the kids I was a floor nurse. I struggled with fatigue and about twice a month I was in m doctor's office telling him I was exhausted and could not keep up and needed a note to be able to go home and sleep without losing my job. I worked with him and he knew I was a hard worker, but could not explain the fatigue.
In 2000 I noticed my cheeks glowing red. He sent me to a dermatologist. he said it was a lupus rash and refered me to a rhumatologist. My first ANA was negative, but I persisted and asked my regular doc and friend to try and that one came up positive. At that time I was working nights and caring for my children during the day so
I was always tired anyway, but it seemed like something had happened. I had my children and now after that I am COVERED with stretch marks??I was in tremendous pain and had trouble walking and even dressing myself. The rhuatologist said my inflammation levels were not high so I couldn't be in pain like I said I was and told me I was just a tired mother that nothing was wrong with me.She said I should lose weight and try exercising. She ordered trazodone at a low dose at bedtime so I could sleep as I seemed to fall to sleep okay, but would be awake for hours at night though I was tired. I was not able to work anymore and we had to sell our house because we could not afford it.
We moved away in 2001 and I tried a new rhumatologist. He has monitored me since. At times my inflammation levels would come up a little all the while I am in pain, allergic to the sun, have mouth sores, my hair is thinning and growning in curly and dry and am still not able to work, and have mood wings and fatigue and trouble sleeping and could not lose weight.
At times when I would have episodes where I was in more pain and syptoms were increased my blood pressure would go way up. I run normally at about 110/70 and I would see it up around 150/110 and my face would puff up. He had no answer for it and in the mean time diagnosed me with sjogrens. During some of the episodes I would drink copious amounts of water and void very little dark tea colored urine to which he could not explain and never checked. He kept me on nsaids until I could no longer take them because they hurt my stomach.
He has suspected cushings as I have a huge buffalo hump and bruise easily(always have a colorful assortment of them all over my body) he did a free cortisol test in the middle of the day and it came back normal. He had a ct of my hump on my back and that came back as normal spine,just confirmed it is fat. Recently I have been having trouble walking and complained how painful my hands and feet are especilially at night. I asked him to please try early morning cortisol and he refused and told me to go to my GP and see what she could come up with, but be sure to keep my September appt.
I saw her just over a week ago. I told her I needed her to help me figure out why I am in so much pain and what is going on with me. I asked her to do an early morning cortisol test and she became a little testy with me. She commented tthat cortisol wouldn't cause me to be in pain or keep me awake at night or make me obease. I asked her if she had heard of cushings and she said "you do not have cushings." Then she put me on cymbalta and said we would try to treat it as if it were fibromyalgia. She also ordered tramadol , but only gave me ten days worth. The tramadol worked nicely but now that I am out I amvery miserable.
Before I left her office she wanted me to consult with a dietitian as she thought if I could lose weight all of my symptoms would improve. I had been to her office two months before for my yearly check up, the last three times I saw her it was for strep infections and a skin infection on my face which has not healed from over a year ago.I walk 2-4 miles three to five times a week no matter what my pain level is and I reminded her of that, I also told her I had recently done a food journal and only consume between 900 and 1500 calories a day. She rolled her eyes at me and said I should try to lose some weight. I am at 266 right now to maintain that weight I should be consuming 2600 calories a day and sitting on my butt. The only lab she took was a cholesterol test. She had her ma call me the other day and tell me my ldl is excellent and my hdl is slightly increased and said "dr. M. says she recommends you increase the distance you walk and that I should eat less and she will seem you in a year." She blew me off. She labeled me as fat and lazy and a hypochondriac.
I contacted Dr. L 's office at Swedish that afternoon and have a phone consult with him on Thursday. I really hope to get some answers. I nearly cried when the nice gal from his office was so kind and listened to me as I told her what was going on with me.Somebody actually listened.I am nearing 37 and really hope to get my life back.
I am grateful for this site and it is encouraging to read about other people who have struggled to find answers.
Had my five day work-up last week. Results with pituitary cyst ... so it is wait and see what to do next. The care in Seattle was excellent at Swedish.
