A.S. Face 0067: Carla Loutfi

My name is Carla. I am now 38 years old and have been living with AS for 10 years. I was diagnosed 2 years ago. I had a tumor removed from my leg in 2000 and my legs kept hurting. They doctors thought it was recovery from the tumor removal but they never got better. I hurt when I walked and have frequent leg cramps. The pain started in my right leg then went to my left which did not have the cancer so I knew it was no longer recovery from the cancer. After the pain got worse I started seeing doctors. Begging them to give me something for pain and find out what was going on and fix it. They thought I was just a druggy seeking drugs. I went to a vascular surgeon in 2002. He discovered I had some type of rheumatic disease attacking my arteries in my legs. The pain was caused from lack of circulation due to the damaged arteries. He immediately sent me to a Rheumatologist, the best in West Virginia, the head of the Rheumatology department at West Virginia University hospital. She walked in did not examine me and asked me why I was there. She said there was nothing wrong with me and sent me home. Later that year I woke up one day and half my body was numb. I had no feeling on my right side. The ER thought I was having a stroke. After a couple hours I got feeling back but it was replaced with intense pain. For three days I never slept I was given every pain med available including morphine with no relief. The doctor tried a nerve pill and finally I was able to rest. Turned out I had been in so much pain for so long the nerves that signal pain went haywire and would not stop firing. For the next 2 years I was on pain meds daily as well as nerve meds and anxiety meds. Every time I felt pain my body went into a panic attack. It was during this time that I started getting what they thought was bursitis. It started in my right elbow by the next year was in my left. Then my shoulders one at a time right then left. Then my hips. I had surgery on my shoulders to remove the bursae in 2007 in my right and 2010 for my left. That relieved my shoulder pain tremendously. I got lymes disease in 2008 and ended up with bursitis in my knees, sacroiliac joints, and neck along with my previously affected joints. I had problems in my left eye where my lens shifted due to inflammation changing the sight in my left eye from far sighted to near sighted. The eye doctor could not figure out why. The Orthopedic doctor who did my shoulder surgeries told me I had to have some Rheumatic disease causing the bursitis. He sent me to a physical therapist who would not touch me after three visits cause it made me hurt worse even the electrical stimulus, who also confirmed there had to be an underlying disease. I went to a Chiropractor for pain relief who told me good and bad news. The good news was my ankles did not hurt yet, bad news was every other joint did. He would not touch me. I finally found a Rheumatologist four hours from my home. He talked to me for a few minutes did a quick examine and said you have AS. I started crying because I finally had a name for my pain. The doctors had stopped giving me pain medication in 2006. I was seeing a pain management doctor who gave me twenty cortisone shots in 6 months including my sacroiliac joints but refused to give me pain medication. Finally after a confirmed diagnosis via ex-ray of inflammation of my sacroiliac joints, I started getting pain medication. I can not continue care from my diagnosing doctor due to the distance. I am in the process of finding a new rheumy closer to me which has been a year long project. I now have pain in my ankles too and my fingers and toes. I was diagnosed two weeks ago with COPD due to problems with my lungs now. I am currently having daily pain with sever flare ups weekly that last two to three days at a time. The wet and cold weather makes the flare ups more frequent. I have managed to raise and continue raising three children 16, 12 and 5. I have gone to college on line and will be getting my Master’s degree in Curriculum and Instruction in the spring. I plan on getting my PH.D. I will be teaching college on line so I can rest, stand, sit in alternating turns and still work and support my children. It is so nice to not be alone thanks to this website. When I read stories about the other AS peers and their treatments, I got hope. Thank you for sharing your stories and giving me hope that one day soon I will get the right medication and maybe lead a fairly normal life. Any day the pain is not excruciating is a good day!

Elkins, West Virgina United States of America


4 Responses to “A.S. Face 0067: Carla Loutfi”

  1. Where do you live? I am in WV, near Charleston. I see a great Rheumy in Parkersburg WV if you live near there.

  2. I live in Elkins. I was seeing a great Rheumy in Martinsburgh but it was too much of a drive, Parkersburgh would be too. Keep in touch its nice to have someone who understands so close.

  3. Dear Carla,
    Thank you so much for sharing your story with us. I hope that by reading everyone’s stories we can all learn something that makes our lives had better quality and enjoyment.
    Sincerely Cookie

    • Thank you, I am hoping to approach my doctor about some of the medicines mentioned here that helps. Wish me luck.

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