A.S. Face 1412: Christine

Face 1412
My name is Christine  from Littleton Colorado.
My symptoms became noticeable enough to be concerned at age 17.  I went to a doctor who prescribed me physical therapy and a constant, heavy dose of Vicodin for my condition for the better part of the year.  My memory of that year is shotty because of the effects of so much Vicodin and I came out of the experience pregnant and trying desperately to overcome my new addiction to opiates.  I lived in pain, the single mother of a newborn six more years after that until finally my new husband insisted we tackle to problem, no matter how long it took.  I started off with an orthopedic surgeon who played “quarterback” after a few tests (SI injections, MRI’s, and bone density scans) send me to a different specialist.
The first rheumatologist I met asked a few general questions and dismissed me with a new prescription of  muscle relaxers. Dead end.  Horrible doctor.  Shortly after I had a terrible episode that landed me in the hospital, frozen in pain.  They did more MRI’s and found inflammation all over my spine.  Their first reaction was to call infectious disease and perform a spinal tap.  Once I was cleared of meningitis, I was sent to get a biopsy of my spinal column.  I was cleared there too. My “quarterbacks last resort was to send me to the only specialist in Colorado who performs SI fusions, an hour an a half away.  He looked at my charts and instructed I go to a rheumatologist.  I was frustrated, defeated, and after being told to go back where I started, utterly hopeless.  I burst into tears and explained I’d been there and all is been through since.  He strongly urged I try another one, and if that failed, he would perform the procedure.  The next rheumatologist I saw performed a simple blood test and diagnosed me within minutes.  This was in 2010.  I’m so happy to have such effective treatment.  Now that it’s been identified and treated, I’m not the same person.  Being able to hold my babies, walk up the stairs, SLEEP, has been life changing.  Bad flare up days are still tough, but I’m glad I don’t have to live with the unknown anymore!

I look forward to keeping in touch with the community you’ve created with this site!

Colorado, United States of America


6 Responses to “A.S. Face 1412: Christine”

  1. Dear Christine,
    Thank you so much for being for sharing your story with us.
    Sincerely Cookie

  2. So glad you’re feeling better. Please come to our AS support and information group. Our next meeting is March 2, 6-8, at the Denver Arthritis Foundation. More information from the Spondylitis Association.

  3. I ran across your story while researching something else and I’m glad your doing well. I’m trying to cope with something different and have been for over 10 years. I can relate to you in regards to going to different doctors and going through multiple tests only to hear the same “I don’t know what’s wrong with you” answer. It’s frustrating to say the least. I know my ailment is more of a distraction rather than life threatening but it effects the quality of my life. My knee joints feel like they have a flaming elephant sitting on them at times. I have been tested every way possible and then told nothing is wrong with my knees and then the psychological suggestions start coming. They start suggesting in a polite demeanor that my pain is being manufactured in my head and not my knees. I sure wish it was possible to attach some kind of human USB cable to the doctor and one to me and then transfer the symptoms and then see what they say.

    I read where you were on medications containing opiates and the effect they had on you. I have been on different pain meds throughout the years and it seems when I find one I can tolerate they remove it from the market. Maybe I’m missing something but I can’t understand why anyone would want to take them that doesn’t need them. They make me nauseous and dizzy and I despise them but if I want to walk or stand then I have to take them. I have asked my doctor for a stronger medication to cope with the pain and possibly lower the quantity I would have to take. He has refused to prescribe them to me because of the possibility of addiction. Honestly at this point I don’t care what they do if they work to relieve the pain. I get tired of having to put a heating pad on my knees when the pain becomes intolerable. Did the medications help at all and how hard was it to quit taking them after being on them for a period of time?

    Thanks in advance for any help or opinion you may offer and I hope your life continues to get better.
    Martin

    • Martin,
      Thank you so much for sharing. It is terribly frustrating to be matched up with a physician who doesn’t seem to understand or believe you. I had the same experience with an inability to catch a deep breath. My primary doctor said it was anxiety or in my head, come to find out it was inflammation in my thorasic spine crowding my lung space! Not every doctor knows everything or has equal experience, if you feel like you’re hitting a brick wall, I highly recommend you keep searching as frustrating as that is.

      As far as opiates go, of course they made me feel better for the period of time I took them. They told my brain everything was great when it really wasn’t! The problem is they don’t fix the root problem. They were incredibly habit forming and my family had to intervene in order to get me off of them. Once you start you need more and more and they are damaging, to my liver and my memory. It’s so hard while you are in so much pain to want anything to get any relief you can, but there are certainly alternatives to opiates, however, you need an accurate diagnosis.

      That may not be what you wanted to hear, but I’ll keep you in my prayers that you are matched up with a doc who can help you long term.

      Best wishes,

      Christine

    • Martin,

      Thank you for sharing. My biggest piece of advice would be to keep searching for a doctor who can help you. Not all are created equal or have seen the same types of illnesses. It is frustrating, but if you’re hitting a brick wall it may be time to move on.

      Opiates are not a long term fix. It’s hard not to want them because they give temporary relief and when you are in constant pain, sometimes you’d give anything, even your memory or liver, to have even a moment of relief. But they were extremely tough to give up, my family had to intervene in my case.

      I’ll keep you in my prayers for God to put a doc in your life who knows just what you need.

      Best wishes,

      Christine

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