A.S. Face 0462: Jami

My name is Jami. I live in New Castle, Indiana, and I’m 28 years old. I first started noticing back pain about ten years ago, not too long after I graduated high school. At first it was just a dull ache, and I attributed it to my being overweight. Over the next couple years, the pain became more noticeable. I had gained more weight by this point, so again, I figured the pain was being caused by that. When I was 24, the back pain had become pretty extreme. It took about a half hour to be able to get out of bed in the morning, then another half and hour to be able to even stand up straight. I couldn’t walk around or stand for more than fifteen minutes at a time without being out of breath from the pain. I began to see a general physician for the pain, and she prescribed me different medications for inflammation and pain, because testing had shown that inflammation was high. We also tried back manipulation therapy, which only ended up making my pain worse. X-rays were done, and nothing showed up except that I have Scoliosis. My doctor thought that maybe that was what had been causing the back pain, along with my weight.
When I was 25, my left eye became sore, and started to burn and water. It seemed to me as though I had pink eye, so I went to the emergency room to have it checked out. The pain was so extreme that I couldn’t wait until I could see a doctor. They looked at my eye, and told me that it was pink eye, and prescribed medication. After taking the medication, the problem still hadn’t cleared up, and actually felt worse. I went back to have them look at it again. They told me that they didn’t know what was wrong with me, and just kept prescribing different types of eye drops. When I was finally able to go to the doctor, he diagnosed me with Iritis. He asked if I ever had any back pain, which I thought was an extremely odd question for an eye doctor to ask. I told him that I did, and he suggested Ankylosing Spondylitis. I had never heard of AS, so I was very curious about it. I researched everything I could about it, and it all seemed so familiar. I mentioned it to my doctor, and she didn’t seem too concerned about it, but she kept it in mind. She wanted to rule out any other possibilities first. Eventually, after getting negative results with other testing, and with no improvement from medication, she tested me for HLA-B27. I tested positive, and she became more concerned about me having AS.
After a year of seeing this doctor, I was referred to a rheumatologist. More testing was done, with the result of being prescribed more medications for pain and inflammation. She referred me to physical therapy, and that seemed to alleviate the pain during the work out, but afterward I would be in even more pain. A year later, after numerous tests and x-rays, my rheumatologist decided to try an MRI. She was convinced that there was nothing seriously wrong with me, that nothing would show up on the MRI. This was frustrating for me, because I knew that something had to be wrong for me to be in that amount of pain with no relief from any medications. When the results came in, she told me that I did in fact have AS. The MRI showed erosion of my SI joints. This was April 2011, appropriately enough during Ankylosing Spondylitis Awareness Month. I was prescribed monthly injections of Simponi, and after a few months of being on it, I began to notice that it took less time to get out of bed in the morning and be able to move around. I was still in a considerable amount of pain, and I was still dealing with sore, swollen joint, mainly my knees, feet and ankles. Four months later, there were some major changes in my life, and I had to move four and a half hours away, out of state, back to my hometown. I don’t have insurance, and I had been approved for a year of free injections. I continued the injections until this past February, and if I still had a doctor, I would have been approved for another year.
I haven’t been able to get a new doctor, and I’ve been on no medication for the last almost four months. I’ve definitely noticed a difference in the pain level and stiffness. It is again taking me a while to get out of bed and be able to move around in the mornings. Sometimes I use a cane to help me with balance when I’m walking. I’ve lost about three inches in height since I started seeing a doctor for the back pain, and I’m not sure if it’s from the Scoliosis, slight stooping over or both, My pain is so bad sometimes that I can barely breath, and right now I’m just trying to deal with it the best that I can. I struggle with depression in general, but especially since my diagnosis and the increase in pain. I feel like my quality of life has been decreased, and I’m scared of the possibilities of what could happen in the future. But, it’s something that I have to deal with, and I’m glad that I’m now aware of this disease and can educate others about it.
Indiana United States of America

7 Responses to “A.S. Face 0462: Jami”

  1. Jami- I’m glad you posted your story. I’m so sorry that you are without the medication that was helping you. Have you tried to apply for a grant from the makers of Simponi?

  2. Dear Jami,
    Thank you for sharing your story with us. Remember from this day forward you are never alone.
    Sincerely Cookie

  3. Jami: Welcome to the group–I am #445. I am so sorry to hear that you have been in such pain at such a young age! I am concerned for my almost 21-year-old son, who is exhibiting pain such as yours (and mine). Depression is a major player along with this illness, but remember, you are not alone! Hugs, Stephanie

  4. Thank you for sharing your story with us. I graduated from Henry Co. High in 79. My daddy was a pastor in Sligo, Ky. So I know exactly where you live. 😉 Anyway, welcome. Feel free to ask any questions. We’ll help all we can. Elizabeth (face 40)

  5. btw, have you always lived there?

  6. Thank you everyone. To answer the question about applying for a grant, I suppose that I was approved for one in order to get the year that I had for free already. And I was told that all I would have to do in order to get approved for another year was reapply, but I figured with not having a doctor anymore to sign off on it, that I wouldn’t get it.

    Cookie, thank you so much for everything that you’ve done!

    Stephanie, thank you as well. It’s hard to remember sometimes that I’m not the only one dealing with this, even after reading so many personal stories.

    Elizabeth, such a small world! I have pretty much always lived here. I was born and raised here, and have lived a couple other places over the years, but I always end up back here.

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