My name is Jamie Curtis and I just turned 34 years old. I have been struggling with my health in a profound way for just over 4 years. Though my story starts back in 1996 at the young age of 17 when I became pregnant with my now 15 year old and two months after I turned 18 I delivered a beautiful baby girl in August of 1997. Right after her birth I noticed my back and hips were extremely sore, I thought it was from the delivery which was complicated and I delivered the baby while laying on my right side. A few months after my daughter was born I started to notice a large lump in the centre of my lower back. The lump was hot to the touch and was extremely painful. I was advised by family members to see a chiropractor and so I did. The chiropractor told me that during the delivery of my daughter I twisted my right hip 90 degrees and resulted in lifting my right foot off the floor by a good Inch and a half. It took months of twice a week visits to start feeling better but never once did the chiropractor take x-rays or ask me to consult a physician. All throughout the next 10 or so years when my back and hips started to bother me mainly if I travelled long distances or sat for to long or strained my back in anyway. I went straight back to a chiropractor always thinking my hip had what I called “popped” out of place. I had two more pregnancies after this resulting in 2 more beautiful children one in 2002 and one in 2004. When I was eight months pregnant with my third child I became sick with a flu and ended up in the hospital with severe right side pain. The doctors could not explain my pain so they chalked it up to pulling every muscle on my right side from spine to belly button and after a week in the hospital I was released into the care of my mother and was to wear a pregnancy brace to support my belly as I could no longer carry the child myself. I do not believe the pain was muscle pain as my right side is the worst of my pain especially in my right hip in the ball joint. After my children were born I was a stay at home mom and was extremely overweight and not at all active. My mother was diagnosed in 1995 with Fibromyalgia and although I had not been diagnosed I just knew I also had the same disease. Fast forward to early 2009. I had been working out with a trainer and eating healthy and had lost close to one hundred pounds and had taken up jogging. I drove from Saskatchewan to BC and back in 4 days and once again my right hip was bothering me. One morning in April 2009 I went on one of my regular morning runs and my hip started to send painful shocks down my leg and across my lower back. I knew my hip was acting up again but continued to run when I stepped down on my right leg and it gave out and I fell! I could not walk and I crawled home in the most insane pain I had ever felt in my life. I wanted to go see my chiropractor but our extended benefit plan had changed and I had to get permission from a doctor before seeing the chiropractor if I wanted it covered under insurance. I went to my doctor and explained everything and he immediately told me I was not to see a chiropractor yet and that I needed to see a rheumatologist first. I waited 6 long painful months on a waiting list taking OxyContin by the handfuls. I was a mess and was getting worse everyday. Finally in late September my appointment came and the rheumatologist walked in the room asked me a few questions asked if I had psoriasis or if anyone in my family did which I said my grandfather did as well as my 15 year old (her father had it severely) and she told me I had psoriatic arthritis and prescribed methotrexate in pill form. I left crying, knowing something more was wrong. I also learned by researching that this doctor does not believe in fibromyalgia and also diagnoses 90% of her patients the first visit with psoriatic arthritis without running any tests at all which is exactly what she did to me. By December of 2009 I could barely walk and no amount of any medication was taking away my pain. I was mad!! I called the office of my rheumatologist and made an emergency appointment and I was able to see her within 2 days. She ran a battery of tests on me from blood work including the HLA-B27 test, MRIs, Bone scan and x-rays. The HLA test came back negative and my bone scan showed. nothing but my bloodwork showed that my inflammation levels were extremely high and the MRI showed absolutely no cartridge left between the L4 and L5 discs of my spine. She told me I could not have AS because my HLA test was negative but the more I researched AS the more I fit right into all of the symptoms. It was also the initial thought of my regular doctor which was why he asked me not to see the chiropractor. I was later diagnosed by MRI to have tendinitis in both wrists and recently it has gone into my feet. I have also been diagnosed with pelvic inflammatory disease which isn’t even considered a disease anymore it is more or less like having varicous veins in your abdomen, I was finally diagnosed that same year 2009 by a pain specialist with having severe Fibromyalgia with all 18 tender points positive. Yet my rheumatologist refused to give me an AS diagnosis even though she continued to measure my chest expansions and my back and hip bends. She also started me on Humira in 2011and took me off work in May because I was dragging my right leg behind me and so tired and in massive pain still taking the OxyContin plus a bunch of other medication I was no longer able to be a reliable and efficient employee. Now it is 2013 and I am still on the Humira, I have officially been diagnosed with spondylitis, Psoriatic Arthritis (though I have never had psoriasis) Intercranial Hypertenson ( swelling of spinal fluid around my brain) full body tendinitis, and Fibromyalgia. I take Cesamet, Cymbalta, dilaudid contin, dilaudid (fast acting for breakthrough pain), flexeril, and zopiclone as a sleep aid. I also stopped taking the pill form of methotrexate and started injections but they made my hair fall out so she stopped me from taking any methotrexate at all. Just recently we moved to a new city and I have a new rheumatologist she has been wonderful and told me that my last x-ray showed changes in my SI joint of course on my right side and said she is not ruling out AS at all. My last rheumatologist ruled it out the second my HLA test was negative. My new doctor is also sending me back to the pain specialist to rework my medications in hopes of getting me down if not off of the large amount of pain medication I take daily and has ordered a sleep study which should have been done years ago. I can sleep all day everyday which is what my body prefers to do but i am continually exhausted. If I do not sleep at least 12 hours at night I will become physically ill by the next evening if I have not had a nap during the day. My naps range from 4-6 hours at a time. I have yet to be diagnosed with Ankylosing Spondylitis but there is no doubt in my mind that I suffer from this awful disease and I am a face of AS.
Jamie Curtis – Regina, Saskatchewan, Canada