I am 24 years young, and right around the time I was 19 I suddenly started having sharp, blinding pains in my hip joints. Every time I took a step I had to take caution because I often lost feeling in my legs and fell. I had no idea what was going on and had initially thought I had a pinched nerve, so I saw the doctor. She said I was having muscle spasms and prescribed me a mild muscle relaxer. I asked her if she was sure, because the pain was located deep in my hip joint. She said she was positive and sent me on my way. The pain continued for a few months, alternating sides of my hip until one day the pain disappeared completely. I thought this problem had somehow corrected itself and I wouldn’t have any other issues again. 9 months later, the pain had started to creep back into my life. It wasn’t as bad at first, but eventually the pain had returned worse than it had ever been. I used to be an avid runner, but could no longer run (or even walk some days) and gave up running and any exercise in general as it was too painful. I moved to a new area once again saw a doctor who unfortunately didn’t know what was going on. He prescribed me Vicodin and referred me to a Back School. The medication took the edge off the pain, but I wasn’t getting any better. It got much worse to the point where I wouldn’t be able to go to work, school or walk around for days in a row. I decided to try a chiropractor, still thinking I had a pinched nerve in my hips. He was a very kind person, but he had no idea what was going on. I went to him for adjustments for a year, took special joint supplements, they tried ultrasound treatments on me, electrical impulses, etc. Nothing ever helped and the X-rays showed inflammation and bilateral sacroiilitis, but he had never made much of a diagnosis. He suggested I might have a cyst in my hip that needs to be removed and that might be what’s causing the inflammation. A few days after this diagnosis, I was hit with the worst flare up I had ever suffered. I couldn’t stand, sit, lay down, walk or do anything. No position in the world was comfortable and I laid in bed all night long crying. I had hit my breaking point. I felt so out of control and that I would never find anyone who could tell me what was going on. That was one of the worst nights in my entire life and all the pent up anger and frustration had come out uncontrollably. My husband took me to the ER because he too was frustrated with the situation, so off we went. I was operating under the diagnosis of a cyst in my hip, so when we got there we told the doctor of the cyst and asked to have it removed. I brought my MRI, X-rays and other doctor’s notes and they said they couldn’t help me because the chiropractor had misdiagnosed me. They could only run some blood work, make a guess as to what it was and send me home with some medication. The next day I hobbled to a different doctor to see if she might have any new ideas. She ran some bloodwork and decided to test me for the HLA-B27 gene, something to my knowledge no other doctor had thought to do. She then referred me to rheumatologist and was pleasantly surprised! I described my symptoms, she asked about family history, she took new X-rays and MRIs and without missing a beat she gave my illness a name: Ankylosing Spondylitis. My rheumatologist is a wonderful woman who is compassionate and has great bedside manner; something I had never experienced!
From here, things only improved. Although it took 9 months of trying different medications, I finally started Enbrel in February of 2011 and it has been an absolute godsend. I finally have my life back! Since starting Enbrel I might have had 3 flare ups total. I am once again active and after years, I can finally run again! I no longer have days where I cannot walk or move around, I don’t miss work or school anymore because of my illness, and things are finally starting to return to normal.
I feel so lucky because so many people can go a decade or more without being diagnosed. So many people are living in pain because they have no idea that this illness might be a possibility for them, and others haven’t found the right medication for their AS. Some people accuse them of being a hypochondriac, or complaining of a little back pain. It’s been a difficult road learning to accept my illness and adjusting my life accordingly, but I haven’t felt this healthy and hopeful in years. I’m looking forward to a cure!
Arizona United States of America