- CASE FILE
I have global inflammation. This started at 15 years of age and I am now 27. This causes chronic pain, fatigue, and flu like symptoms.
ABOUT THIS CASE FILE
At 15 years old I started to manifest a menagerie of odd symptoms. I was frequently out of school because I was too dizzy to stand, let alone concentrate. I felt this incredible internal heat. Like my insides were turning to molten lava. But my exterior would feel cool and I would shiver violently at night. There were general flu-like symptoms: coughing, fever, fatigue, headaches, nausea, loss of appetite, and night sweats. My symptoms would gradually worsen and add to the previous, such as, severe dizziness, trouble going to the bathroom, focus and concentration issues, general discomfort, itching and feeling like my skin was being stretched too thin. These symptoms seemed to arrive with my period every August and would dissipate around Winter time. Each passing year my symptoms worsened; I started getting rashes and swelling in my hands and feet, my eyes turned red and were extremely painful especially with light, sleeping became more and more difficult. Once the sun went down I would get so cold, I would put on every piece of clothing I could manage and get under the covers. I couldn't stop shaking. It was so difficult to get any sleep. I would wake up and be soaked with sweat and would feel the need to vomit. I'd run to the bathroom but would black-out before I got there. Without my sight, I would like down on the cool tile and close my eyes. Eventually someone would find me there on the floor or I'd come to disoriented and need several minutes before my sight would return. The swelling continued and made it difficult to walk or wear shoes. Sometimes I would wake up from a nap with rashes all over and I would cry in pain because it hurt to even have clothing touch it. My headaches became migraines: light and sound were the enemies and my skull would chronically feel like I had been badly beaten. At 19 I almost died. My symptoms had become so severe that I had bruises from doing nothing and I could no longer walk on my own or sit up. The weakness I had felt in my body before was now so prominent that, when I had tried to get out of bed, my feet would not hold me. I was in college and had to ask my roommate to help me sit up, stand, get dressed, and eventually go to the hospital. The hospital doctors called me, "Mystery Girl". I would always smile and joke with them because it was better than facing the reality that I was dying. There were so many doctors. Each one had a different theory that yet another test would disprove. No one had any idea what was wrong with me. Meanwhile, I was only in the hospital for a week but during this time I would no longer eat, I would sleep all the time when I could, I could no longer hold my bowels, and I still couldn't walk well on my own. I lost 15 pounds and was later told I looked like a grey skeleton. They eventually slapped on a diagnosis of Sarcoidosis, despite a negative bronchoscopy, and gave me prednisone. My symptoms were managed under the steroid for about 3 years. However, there are severe consequences for long time use of the drug. Without prednisone, the symptoms came back like a dam holding back a flood. My eyes had never felt right again but without prednisone they turned red and came extremely painful all over again. My eye specialist didn't know what to do and prescribed me steroid eye drops--these did nothing. I saw several specialists before I found one who was able to diagnose and treat the problem. I have panuveitis which means my entire eye was swollen. At this point I was legally blind; someone would enter a room and I would be unable to make out their face. In the real world I had been a paralegal and lost my job without my sight. My eyes were not the only factor, however; the fatigue, joint pain, migraines, tenderness, rashes--it all came back. At this point I was supporting myself in Boston and living alone. For the first time since these symptoms started, I had no one. There was no one who could help with family living far away and no friends I was close enough to to burden. As things began to look more and more bleak I lost hope. I was diagnosed with depression and anxiety around the time I tried to take my own life. What could be worth all this pain? Then I saw doctors daily--and it was exhausting. Fewer and fewer seemed to know how to help. And here I am. On medication that we are hoping will help, hoping tomorrow might be better. I haven't lost the ability to walk yet but walking does hurt at times. I'm so tired. Not just because the disease makes me tired, but I'm so tired of being sick. Please help.