Faces of Ankylosing Spondylitis is a website dedicated entirely to the stories of those with AS. Men, women, and children from numerous countries and continents have shared their stories and photos, and we will be sharing some of them here with you with our gratitude to all. You can read all of the stories (there are close to 2,000!) at thefacesofankylosingspondylitis.com/
By Amy Hicks
Tuesday, July 11, 2017
I first began having pain in my very early 20s. I went to my primary doctor, who told me it was a pulled muscle, gave me pain pills and sent me on my way with a “come see me in a few weeks if it still bothers you.” I didn’t last a few weeks: I was back in her office by the end of that same week. She then decided to send me for bloodwork and an X-ray. Results came back and, besides a Vitamin D deficiency, everything was normal. I left the appointment with no more information than I had gone in with, and another pain pill prescription.
I decided to give her one more chance before I sought another opinion. A month after I had originally gone to seek help I was back in her office for the final time. She told me to try physical therapy to see if that could possibly help. I reluctantly agreed and off I went for two months of physical therapy. I was attending three sessions of hour-long treatments a week for eight weeks. I do admit that it helped, but not as much as it probably should have. So after the treatment was finished and I was better, but still hurting daily, I sought out a different doctor in the same practice. Unfortunately he turned out to be worse than she had been.
At this point I was about 3-4 months into my “condition” and no one had given me any useful information. Doc #2 wanted to send me for MORE physical therapy! I asked why more when the first round did me little to no good…He had no answer for that question. So he handed me yet another round of pain pills and an MRI order. A few weeks later I returned for the results and got the first “there’s nothing wrong with you” speech. I couldn’t say too much since I had no clue what could be wrong with me and I trusted that these two medical professionals knew what they were talking about.
So I suffered, for the most part in silence, for the next five long years until I woke up one day and couldn’t walk. Each time I tried to put weight on my legs they collapsed underneath me. I was scared out of my mind and went to the ER. More X-rays, scans, bloodwork and a very insulting ER doctor who was the first to tell me it was in my head and I was making it up. Still having no answers I thought that I was going nuts. I again sucked up the pain and frustration for a few more years.
From all the pain and aggravation and stress of life plus my physical problems I went into depression, and sought the same primary doctor I had seen for a second opinion on my back pain. I explained my symptoms and the fact that I was always exhausted and cried frequently to cope with my stress. He was so kind as to inform me that if he had a magic pill for every person he saw with my problems he would be writing scripts out all day long….
I had hit my ceiling at that point. I left that practice and went for a third opinion for my back and a second opinion for my depression. I was very lucky and extremely grateful to have found my current primary care physician. She spent two hours talking with me and looking at tests and scans and X-rays. She asked me to go for one simple blood test: HLA-B27. I came back positive for this marker. She called me with the results and suggested I seek out a rheumatologist.
She was kind enough to recommend a group practice. I went in and saw the first of two rheumatologists at this group. The first one informed me that my HLA-B27 status had nothing to do with what I was seeing her for. She told me I have arthritis and that’s it. She prescribed methotrexate and I started taking it. I had taken it for about a month when my hair started to fall out and I noticed no improvement.
It was at this point that I lost my job, and so with no insurance had to halt all treatment as I couldn’t afford to continue. Once I had insurance again I went back to see the rheumatologist to resume my treatment. However she no longer wanted to do the methotrexate. I got sent for X-rays and MRI imaging and when I went back for a follow up for the results, I received her “it’s in your head, there’s nothing wrong with you” diagnosis.
I was beyond frustrated and returned to my primary care physician. She recommended a different rheumatologist who had recently joined the same group. I went in again, prepared for the same treatment. However I was pleasantly surprised when he went through all of my records and came out with “have you ever heard of ankylosing spondylitis?” To which I, of course, said no. He proceeded to tell me about AS, and answered my questions. He also immediately started a course of treatment which included Humira and Mobic.
I’ve been officially diagnosed with AS for 18 months now and have been taking my medication as directed. I feel a million times better than I have since the pain reared its ugly head. I’m very thankful for all the support and advice I have received from all of my fellow AS warriors!!
Pennsylvania, United States of America
3/2/2018 12:03 PM
Thank you for sharing your experiences. Sounds like a long road to get an accurate diagnosis and effective treatment.
"It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect."
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