My name is Jim and was diagnosed with AS in October of 2009. At the time I had to be wheeled into the rheumatologist in a wheel chair due to the pain. Without much hesitation and after about an hour with the doc, she gave me the bad news. She confirmed it at the next appointment at which time she told me that it was pretty well advanced and that I had probably had AS for at least ten years. My great grandmother has RA but no one else in my family does so this came as quite a shock. The news was depressing but at least I knew what was going on.
The reason I went to the rheumatologist in the first place was because I was out trying to walk my dog and I had a fairly new neighbor who saw me and came out to greet me on the street. After introducing herself again she asked me what was wrong with me. I explained to her about my back problems and she looked at me and told me no that wasn’t it. I kinda laughed and said okay what is it then. Her response was “you have rheumatoid arthritis” again I laughed and said no way it was just my chronic pain. She gave me the name of her doctor and said to make an appointment if I didn’t believe her.
After I was diagnosed, I asked her how she knew? Her response was ” because I have it I can tell by the look on other peoples faces that they have it” I don’t know if it was a fluke of if that’s actually possible but I’m glad (I think) that she told me and also shared the name of her doctor who has been absolutely wonderful to work with and be treated by.
I recently had to retire at age 54 because of the pain. I had been the fire chief of a small department in a college town. Despite my every attempt to keep working, I had no life. I would go to work and come home and rest till I feel asleep. On the weekends I spent trying to catch up in order to go back to work. Since retiring which was about six weeks ago I have begun to feel better and have started to exercise.
In addition to the AS, I have had three back fusions and am now fused from L2 down to S1. I have had chronic back pain since my first surgery and also have had a spinal chord stimulator and a pain pump installed as a result. I also have a lot of osteoarthritis in my back from all of the surgeries. I have also had both hips replaced due to my back surgeries, and probably now knowing what I do the AS, and now I am having to have my knee looked at due to increased pain and it locking up. Will probably require some type of surgery to fix.
The doctors probably missed the AS in the early stages because of all my back problems and because all the doctors are so specialized that when you tell the you hurt in one particular place, that’s all they look at. No single doctor is looking at the big picture which is why I believe that it took so long to be diagnosed. During this time while suffering there were many times I wanted to just give up, pack it in and end the pain. I have always tried to maintain a positive attitude but with this disease its very hard. Probably the two things that kept me from doing anything drastic were my kids and hope. Hope that someday they will find a cause and a way to end the pain and suffering that we all go through.
Thank you for all you are doing to spread the word about this awful disease and the ability to come to a page and read about other people who are going through the same thing and to read their stories. Because unless you have this, you don’t understand the amount of pain and suffering there is with it. Our spouses come close but I don’t think they understand what its like to have it but they know how much it affects lives.
Ohio United States of America