“Hi – my name is Laura Trautman. I’m 41 years old and was diagnosed with AS in 2008.”
Pennsylvania, United States of America
Thank you so much for sharing your story with us.
Cookie Has A.S. said this on May 17, 2016 at 10:02 am | Reply
Hello, my name is Randy Scott. I am 59 years old and didn’t get diagnosed with AS until 1987 and I have a strong family history of AS. I started noticing that I was waking up feeling stiffness in my low back. When I got out of high school in 1974 I went into radiology technology to be an X-ray tech. That year was the worst time of my life. I had tremendous amount of what I thought was hip pain. The radiologist looked at the images and said it was fine. Later I found out that the pain was coming from my SI joints. I found out that my dad’s brother had it also. My oldest sister also has AS. I just used aspirin and our family Dr. gave me some anti inflamatories. I wasn’t diagnosed at that time. In 1987 I was diagnosed and started seeing a Rheumatologist who had AS too. This Dr. put me on nsaids and I ended up not being able to take them. Ibuprofen was very hard on my GI system. I ended up only being able to use acetaminophen. Every time I change Dr. due to employers changing insurance companies every few years or insurance companies changing their formularies in the middle of the year I may not be able to afford the medicines I normally took. Then I was forced to take another medicines that didn’t agree with my stomach. I have had numerous x-rays over the years. I was told by my rheumatologist that my SI joints were fused completely and I shouldn’t have pain anymore. This is not true, my SI joints have been fused for a long time and I still have a lot of pain in my pelvis and sacrum. My thoracic spine is fused including the rib facets. The spinus processes are fusing together causing a lot of pain and range of motion. My ribs hurt from the back around the sides of my chest and my sternum hurts where that rib connects in front. In 2014 I got hurt in my mid thoracic spine and my lower back hurt too. Two months later I woke up and could not stand up or sit up. I had an appointment to see a neurologist but it wasn’t until December and this was November. I ended up having to wait until January 2 for surgery. I have not been able to go back to work due to low back pain and mid thoracic pain. The other day I fried 2 eggs and by the time I was done I was miserable and in a lot of pain. I had never taken pain medicines for this. In 2014 I was sent to pain management and currently I am taking a fentanyl patch 25mcg/hr every 3 days and percocet every 6-8 hours, simponi once a month and celebrex is a necessity. I still have a lot of pain. I really have a hard time dealing with this now days. I am having a hard time with SS disability. I have worked all my life and paid in to SS. I know everybody else worked with out calling in sick but I would welcome anybody to check my work ethics every job I ever had. And then there are people who haven’t worked many days in their lives and have no problem. If it sounds like I’m pissed, I am. There are no jobs anywhere that I know where you can lay down for an hour or so when you start hurting.
Sorry if my story is not as bad as yours but you know “nobody’s sickness is as bad as yours.” Anyway thanks for letting me share this with you.
Randy Scott said this on May 17, 2016 at 8:14 pm | Reply
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