My name is Kirsten Early. I am now 55 years old and completely fused due to Ankylosing Spondylitis, save for some small movement in my neck. I spent three weeks in the San Francisco Spine Center for evaluation, diagnosis and treatment in 1984. At that time I was told I had a congenital spinal stenosis and several bulging discs. I was to think of my spine as a tree trunk and move without bending or twisting. If I didn’t get addicted to narcotics I’d eventually improve. I spent the following years in misery, taking 18 – 20 aspirin a day to try to function. My ribs became extremely painful and finding a way to relax and sleep was very challenging.
I took a fall after a snowstorm just before Christmas in 1990, I was 30, I caught myself on my hands in order to avoid hitting my tailbone. When I was able to start to function again I tried stretching and had the most painful spasms of my life. The next week I made an appointment with an orthopedic surgeon for a consult to see if he could do something to make my life easier. He ordered a CAT scan and explained he could do nothing for me and referred me to a rheumatologist. I asked to see the scan and as we observed it he explained that my SI joints were completely fused and the rest of my spine looked like a 65 year old with advanced arthritis.
At my first rheumatology appointment I was informed that I was no longer 5’6, but closer to 5′ 2 and my ribs no longer moved. I was pretty shaken and each breath for the next few months felt claustrophobic. My doctor put me through trials of different NSAIDS and I finally settled on Naproxen. I was nursing a three month old so the few alternative medications were contraindicated. I didn’t see my rheumatologist consistently as we moved and at times had no insurance. In early 2001 I participated in a final double blind study for Enbrel as they sought approval to use it for Ankylosing Spondylitis. After they opened the medications to all the participants, I had the great benefit of being able to sleep better with less pain. At times I felt good enough that I didn’t need to take Vicodin or Aleve.
After ten years I started to have frequent upper respiratory infections that were difficult to shake. I had to stop taking the Enbrel weekly and when I did take it I’d take smaller doses less frequently. I was diagnosed with Crohn’s two years ago and started taking Humira. I was told to stop taking Aleve.
My AS symptoms were not treated as effectively with Humira, but it did control my sciatica. I now take Humira weekly to control my Crohn’s symptoms. I see a pain management doctor to control the AS pain somewhat. I’ve also had osteoporosis since my late 30’s. I believe I was initially misdiagnosed because I was a woman. If I’d been diagnosed correctly, maybe I would have fused straighter and been able to keep my ribs moving. In my case, not treating my pain affectively in the early years left me more disabled than if my pain had been controlled to enable to move my body.
If we don’t use it, we lose it.
Washington, United States of America