And It's About Time There Was Some Support For Cushing's!
I am 37 years old, and have several chronic illnesses. Ready? here comes the "initial parade!" I have FMS, CFS, IBS, TMJ, MCS, cervical spondylosis, degenerative disk disease, S/I strain, plantar facisitis, And then, to add injury to insult, I woke up one day and the right side of my face was just hanging there! Bell's Palsy. It is supposed to be temporary, just a few weeks maybe, but the last time I had it (1988,) it lasted almost a year. I called my doc immediately, and he phoned in a prescription for an anti-viral and prednisone. I rushed to the pharmacy and thus began my journey.
I took 80mg of prednisone for 10 days. My last dose was in the morning. By about 2 pm I was in agony. Every muscle, joint, scar, and freckle on my body was excruciatingly tender and throbbing. I managed to call my Mother and tell her I needed help. I couldn't walk, sit, stand, move, lay down without tortuous pain. She called my doctor who prescribed more prednisone with the plan that I would taper off of it this time. I tried it, but every time my Palsy symptoms would get more severe, and I would have a lot of pain. He and I talked about this, and he told me there was no great risk in taking this medicine, and that a person had to be on steroid therapy for years in order to experience serious side effects.
About a month after that, I began getting really dizzy, and had trouble walking. The pain from the plantar facisitis increased and I was unable to wear shoes or stand on anything harder that a pillow. Then I went to sleep. I slept 16 to 20 hours a day for 8 days. I woke only to eat, use the bathroom, or change my jammies because I had sweated through them.
On the eighth day, I had quite a shock when I went in the bathroom. I looked in the mirror, and did not recognize myself. Normally a skinny chick, now my face and neck were huge. I didn't even notice my belly until I tried to put on real clothes. I had bruises all over my legs, and it felt like my eyes and eardrums were going to burst outwards. I got really scared, so I packed a bag and drove to my mom's house. It took a long time since it was the middle of the night, my eyes weren't focusing right, my legs weren't working right, and I kept getting dizzy and light-headed. I pulled to the side of the road several times, but I finally made it. I crept into the house and laid on the couch until mom woke up. She took me to the VA hospital in Seattle.
They admitted me, and sucked out about 80% of my blood, did a CT scan, X-rays, MRI, spinal tap, poked me, prodded me, and asked me "Does this hurt?" After 4 days, they released me with a brand new wheelchair and instructions to go home, take my meds, be careful not to fall or do anything strenuous, and come back to see them in 6 weeks. I am successfully tapering off the prednisone this time. I am down to 5mg in the am and 5mg at night, without a severe increase in pain or other symptoms.
I would like to know why none of my health care providers, and I mean NO ONE bothered to tell me what Cushing's was or even that I had it. A nurse said "Don't worry, that kind of swelling happens sometimes. It will go away when you start tapering off the steroids." I am still a little cushie-puff in the face, neck, belly, and hump. My blood pressure is out of control. I have to shave my facial hair every other day; my dark brown mustache and beard are a lovely contrast against my blonde hair! Every scar and stretch mark is a horrible purple. I am edgy, impatient, panicky, and sometimes downright mean. I still sleep at least twelve hours a day, and don't feel as if I ever laid down. I have begun using a walker to get around the house (against the doc's orders) but still am mostly confined to the wheelchair.
Help!!!! Does this ever go away? What do I have to do? I will admit that my life was not all perfect and fabulous before Cushing's, but give me a break, this is ridiculous! I used to have good days sometimes. Now I just lay around and swell up and yell at people. HELP!!!
thank you
