When the pain was to intense to handle, I was sent to a pain management Doctor, where I was subjected to electric shocks, a stretching machine and last but not least a stress management therapist who lit incense turned down the lights and chanted “Feel the pain go down your back through your hips into you legs and out of your toes” Yeah, I felt it alright.
The Doctor finally released me with no official diagnosis. He just did not know what caused my pain, but continued to say that it was all in my head.
In 1990 at the age of 25, when I was in the Police Department, a chiropractor came into the station and advised that we had a stressful job and that the wearing and weight of a gunbelt, along with getting in and out of a vehicle for 8 hours could result in pain. Pain that he could fix and our insurance would cover the visits.
I decided to visit this Doctor because I figured I had nothing to loose.
On my initial vist he determined that I showed signs if the disease by examination only and requested I see my primary ASAP for blood work and MRI. He indicated that he could not work on me as he could cause severe damage to my body. I was instructed to see my Primary Care Physician for AS related tests.
I did, and after explaining to my Primary Doctor what was going on, he said “I don’t think you have AS, but lets do the tests anyway. Both tests proved I was AS positive.
With my official diagnosis now in place, my treatment consisted of Celebrex and Physical therapy. Both did nothing for my horrible pain. I was eventually taken off of Celebrex due to this medication causing heart attacks. I was prescribed pain meds which I hated to take, and could only take when I was not working.
I was then sent to another Doctor who would inject medication into my back and hips. I never knew what this medication was called, but again it did nothing to ease my pain.
In 2002 my Primary Doctor finally sent me to a Rheumatologist.
This was Chapter one of many and my introduction into the the life of BIO medications. Remicade they told me, this was going to help me. I was scared to death after reading all of the horrible side effects associated with this drug. But, eventually decided that it was in my best interest to give it a try.
My very first infusion, I suffered from horrible burning and tightness to the chest. I thought I was a gonner ! After a saline flush and benedryl infusion the symptoms passed and I completed the infusion. Prior to any additional infusions I had to be pre-medicated. Consisting of 2 tylenol, 1 benedryl, 1 claritan, and then liquid steroids before the infusion by infusion. The Remicade was my miracle drug. I never felt better until 12 years later.
Seems Remicade was no longer working and my body apparently developed immunity to it.
Since then I was placed on Cimzia which didn’t work, Enbrel which didn’t work, and now I start another journey on Simponi. I hope this works as I am running out of options.
The signs of AS are upon me now at age 51. Hunched over, joint pain, and tired all the time. But I refuse to give up, and I refuse to have people feel sorry for me. My positive attitude has gotten through many a bad day.
This is my battle. A battle I have been fighting for a long time and will continue to fight until the last day.
Maryland, United States of America