Hi my name is Joyce and I have AS! I was diagnosed in 1992 after reading about possible back pain diagnosis in my anatomy book while in college. I went to my GP and told him I wanted the blood test to see if I had this gene HLA-B27. Of course first thing out of his mouth was “only men get that!” This doctor had worked really hard with me to help figure out for over 5 years what was wrong with me; why as soon as I would lie down my back would begin hurting, or why the pain would become so excruciating if I would lie down for more than an hour. Took the blood test and the next day had my results. Walla I had AS. Then my doctor prescribed some anti-inflammatories which where helpful. I didn’t have internet connection back then and google wasn’t around so most of my information came from the AS society information pamphlets. Once I figured out that I needed a really soft bed (heated floatation-less water bed), which I got when I purchased a new home, my back felt fine. Now if I went someplace and had to sleep on a different type of bed, then I was out of luck and my back would kill me! I started carrying around a blow-up mattress which worked great. Now my AS affects my sacroiliac region making sitting quite painful at times. My muscles are pulled so tight that it can be difficulty for me to bend over, so I try to do yoga as much as possible and take some pain killers on occasion. My biggest problem came about in 2006 when I suddenly developed IBS. This debilitated me to the point that getting out of bed was misery. No doctor could help me. I had every test known to man with no results. I tried gluten free diet which worked for about 18 months, and then started going to a chiropractor who told me that my AS was the cause of my IBS. He was the only “Doctor” who linked the gut (klebsiella bacteria) and AS together. Well long story short, I am now on a no starch diet (NSD) which does help. I do take steroids three times a year for inflammation but otherwise now I feel great! I do have some “gut” flares when I have ingested starch and on occasion “back” flares but most of those occur if I have to sleep on a hard bed. After this last ordeal which lasted 4 years I now live my life day to day and am grateful everyday that at least I got some answers and I know I am not crazy!
New Mexico United States of America