17 yr old daughter diagnosed AS. MRI shows degeneration in lower spine, shrinking of space between vertebrae, scoliosis, fusion of bones, etc. All found while trying to figure out an acute onset of debilitating pain BEHIND left ribcage…now chronic! It is cyclic (12 hours) around 3-4 pm and 3-4 am. Lasting for about three hours each time and consistantly for 10 months. This pain causes shock-like symptoms. Palor, vomiting everytime, muscle spasms and freezing up of muscles, and mild hypothermia, which is getting hard to bring her out of. Her temp will be 96.0 degrees at the concluding of her pain bouts (even when she wraps herself in a hearing pad during the pain). Her temp can still be near 96.4-96.8 4 hours later. She feels like Ice! Sometimes her legs can turn blue. We try to keep up with Dehydration…with sport drink and pedialyte and lots if water all day. Nsaids dont work. She sparingly takes morphine on days she has to leave the house in order to function. Her pain level stays at a 7 24/7… her severe pain rates a 10+ . She now suffers with and is treated for migraines regularly as well. We are waiting for Humira to arrive which she will take along with methotrexate and folic acid. We are worried that this treatment will not help with her undiagnosed left side pain, and dont know what to do about her shock-like symptoms caused by the debilitating left side pain that is oddly cyclic in nature. Im just not sure she can live like this for years… she is just barely making it now at almost her one year mark come July. We watch her suffer so greatly!
posted on
Tue, 1 Aug 2023