- CASE FILE
Multiple systems are having many huge flares. See rare diseases identified. Some more brewing. Tired of being too special for specialists.
ABOUT THIS CASE FILE
My health has always been outside the box. Not being able to walk at all for a day here or there since I was 8. 28 surgeries so far. So much bone pain. Pain from dislocations. Pain from soft tissue damage. Some diseases have no treatments. Some are identified yet. In and out of the hospital for uncontrolled pain. Complex Regional Pain Syndrome in some areas. Neuropathy in others. I have zero control over my body now. No regulating body temp, pulse, blood pressure, sleep schedule, sexual arousal, bowel movement, urine let down. What I really need help with is whole system shutdown. I get overwhelmed with one of the diseases and I flare into sleeping for a week or pain in excess of 9-10 everyday until I go into the hospital for infusions of lidocaine or ketamine. The lidocaine infusion worked once. Ketamine bolus give me scary symptoms including paranoia, rage, eye tracking, and feeling like I just came back from the dead. I cannot sit up longer than 10min without bone splitting pain in my left Ischium/sitbone. I have to have my legs elevated or they fill with lymph and my skin feels like it is splitting open. Pitting occurs seldomly. I need to sit up. I need to be awake everyday. I need less pain. I need less daily damage to my body. Stabilize joint after joint to try to get a couple more years of ambulatory walking.