My name is Kelly Rogers, I am 34 yrs old and I live in Bettendorf, Iowa.
My AS-related pain began in 2001 with neck pain (I was 21). I went to the chiropractor monthly from 2001-2013 for adjustments which seemed to help with the headaches and migraines I was having. I remember the chiro taking an x-ray and asking if I had ever been in a car accident. I told him I had rear-ended a truck when I was 16 yrs old and that seemed to explain what he saw. I saw a neurologist in 2007 for frequent migraines and he said if my husband and I were going to have kids soon I should wait and see if the pregnancy hormones help since I couldn’t be on most medication and get pregnant.
In January 2009 I became pregnant with my daughter. The pregnancy hormones did help my migraines and I felt great until the last few weeks of my pregnancy. She was born in October and in late November I found out what Uevitis is. I’ve had Uevitis 6-7 times in the last 4 years, the longest lasting 6 months. I’ve used oral steroids and steroid eye drops so much that I have a cataract in one of my eyes.
In January 2011 I became pregnant with my son. This time pregnancy was rougher, my hips and lower back hurt most of the 2nd trimester up until delivery. I went to the chiro weekly during my 3rd trimester to try and deal with the pain. After he was born, I had lower back pain but I assumed it was from the pregnancy still. In the summer of 2012 I saw the NP at the local Rheumatologist for random joint pain, some of my fingers, toes, knees, hands, etc. She had me tested for the HLA B27 gene and it came back positive. That, along with the frequent Uevitis and joint pain made her suspect Ankylosing Spondylitis for a diagnosis. She told me to stick with Ibuprofen as long as I could because the only other options were TNF drugs “which may cause cancer”.
In the summer of 2013 I realized I was able to do less and less with my kids. My last Uevitis flare lasted January to June of 2013 so I had been on steroids for a long time and once I came off of them my pain levels increased, even when taking Ibuprofen non-stop every day. I went back to my Rheumatologist NP and she had my lower back x-rayed. I was told it showed “pelvic trauma” which is more than likely due to childbirth, and to come back in 6 months. I was not happy with that answer but didn’t really know what to do next.
In the fall of 2013 my lower back and hip pain was so bad that I was barely sleeping, I was not drying off my lower legs after a shower in the morning or sitting on the floor with my kids hardly at all. I asked my general doctor to refer me to the University of Iowa Hospitals to see a Rheumatologist. In December 2013 I had my first appt there and they did an x-ray and MRI of my SI joints. The doctor seemed to know very little about AS and after seeing her 3 times for more x-rays and an MRI of my neck (after pushing that my pain began there) I left that office. She told me I had AS but never would officially diagnose me, kept telling me I was “too young” to have that much pain and shouldn’t be on so many NSAIDs. Luckily, I was talking to someone on Facebook in an AS group and she mentioned her great Rheumatologist was Dr. Eric Ruderman at Northwestern in Chicago, IL. I was lucky enough to get in to see him and I am SO glad that I pushed for another Rheumatologist. He officially diagnosed me with AS and I started Enbrel in April 2014.
Doing my own research online and finding people through Facebook groups have helped me learn much more than just speaking to a doctor. I keep documentation on my symptoms, medication, etc. and have recently started to blog in hopes that someone can see my struggle and it will help them. You are your best advocate! Document, research, listen and don’t be afraid to ask why.
Iowa, United States of America