My life changed on Sept 2nd 2008. I work in various hospitals. I am an occupational therapist. My endurance has changed ever since I almost died of this mystery illness. On Sept 2nd, 2008, while working in the ICU, I began to feel cold, really cold. After working with a patient, 3 hours later, I had chills. But figured it was the flu coming on. Within a few hours, I had developed a huge lump under my right arm-pit that hurt like hell. It was about the size of apricot, sticking out from under my skin. I had trouble keeping my arm down. I was cold, very cold. I kept working but decided to leave a bit early, after my boss saw me and said it was best If I got some rest at home. It was 112 degrees outside. I walked through the parking lot to my car, shivering, freezing, my teeth chattering, muscles shaking as I walked through the Arizona blistering heat to my car. It must have been about 120 degrees when I got into my car, but I still turned the heater all the way up. I drove home, teeth chattering, frozen cold… That night I awoke, the lymph node under my arm, in searing pain, teeth chattering, and a fever like I had never known before in my life, 103.2
I couldn’t raise my arms due to pain in my shoulder joints. They were somehow becoming frozen, red, inflamed, swollen. Every movement made me scream in pain. I could not lift my arms to drink a glass of water. When the fevers broke, drenching sweats followed with the feeling of ice water being poured over me.
I figured I had the flu. But 3 days later, temperatures still to 103, chills, body aches, muscles shaking and body aching, teeth chattering so hard I thought I would crack them. An Arizona summer, 114 degrees outside, and I would sit on the patio with a sweater, wool coat and a blanket around me. Swollen neck glands so tender I could not swallow. Tylenol gave me a 3 hour window of temporary relief around the clock. And as soon as it wore off,everything started all over again, day after day, night after night.
My abdomen was getting swollen, painful. I would push on this area to try and stop the pain. I would sit on the floor facing the sofa and push my abdomen into the couch cushions to try and find some relief for my abdomen. It never occurred to me to think of my liver.
1st visit at Mayo Clinic, both physicians who saw me felt I needed a strong antibiotic, Levaquin. So far, blood showed a normal white limit. I did as I was advised, I took the medication.
The pills gave me extreme diarrhea ,vomiting and dehydration to the point of delirium and hallucinations. Still nothing had changed. Spiking fevers, drenching sweats when the fever broke, 3 hours of relief and then temperature went right back up again. The next day my husband took me to Mayo emergency room again, with a very swollen, tender abdomen. MD thought it was due to my diarrhea and vomiting from the levaquin. He gave me I.V. for fluids, then sent me home.
3rd emergency room visit a couple days later at 11pm to Shea Hospital. The ER doctor palpated my liver area, and I almost jumped to the ceiling as I cried out and screamed. I was admitted this night.
Tests followed for the next 10 days, along with checking for 53 different and viruses. CT scans done at 1:30 am, X-rays at 3am , blood cultures ever 4 hours, both arms, lumbar punctures, specimens taken every few hours. Blood chemistry labs revealed that my liver enzymes were dangerously high. My Ferritan level was at the worst time 14,000. 103.2 Fevers, shaking, chills, diarrhea, drenching sweats when the fever broke every several hours and a rash was developing. I looked like a raspberry.
Dry heaving and vomiting constantly. It was 8 days without solid food so far. I was on a liquid diet. All the blood vessels in my eyes, and around my eye sockets were bloody from broken blood vessels. It looked like blood would spill from my eyes if I leaned forward.
On the 7th day in the hospital, my veins collapsed. A PICC line was placed in my left arm to my heart. This made things easier. At least no more having puncture my arms to have labs drawn at 1am and 4am. I could not tolerate any light. My eyes were so sensitive. I felt hopeless. At points suicidal. One painful day blended into the other. My rash appeared in the evening at 7pm with all of the symptoms, but would mysteriously disappear by morning. The MD in the evening would document a rash covering my body, but the morning MD would not see it. They were puzzled.
On the 10th day I was released in a wheelchair. I could not walk more than 15 feet.I went to recuperate in another city with my parents since I could not stand for more than 2 minutes or walk more than 10 feet. They came to get me and drove me. Nothing had changed. In fact I was now worse than when I went into the hospital. I slept 18 hours a day for weeks. I had lost so much weight, down to 99 Lbs from 130.
No diagnosis or explanation of what was wrong with me . The infectious disease doctor simply said “sometimes we just never know why some people get so sick, I wish you luck” as he wrote my discharge papers. It was September 9 when I was admitted and September 21 when I was released from the hospital.
The way I found my diagnosis was with the only energy I could muster. For 9 weeks, with blankets and frozen joints, 103 fevers, drenching sweats, a salmon colored rash that covered my entire body and came about at 7pm each night (one of the hallmarks of this disease), teeth chattering, swollen lymph nodes through my body, elevated liver enzymes. I had enough energy to search the internet only 1 hour a day. I typed the same symptoms in the computer every day. One day the diagnosis Adult Onset Stills Disease appeared. I made copies of this information and eventually, shameful, humiliating experience with another physician, I begged and pleaded for a referral. I finally found my way to a Rheumatologist, Dr. H. who has been seeing me ever since December 18, 2008.
To learn more, please read my pages:
My Diagnosis Didn’t Come Easy
What Is Adult Onset Stills Disease.
Thank you for taking time to read my journal. Maybe somehow it can help another person.
Stay healthy my friends.