Yori and those interested: I to am 52 years of age. I think the worst part of this disease is indeed the fatigue (for a lack of a better word) and the pain. Well, actually the worst part is people (NO ONE) gets it, most of the time I didn't even get it....
I started having my first mild symptoms at seventeen (around, hum, 1973). Started going to the doctor at the age of 20 and was always told This that or the other thing making me feel like there was nothing really wrong except in my head. I mean I know I am crazy,LOL... After a time I just stopped going to the doc and just lived with it.
I started a small manufacturing business in 1988 and dealt with - what was by then - the chronic diarrhea and back and gut pain like a RM (Real Man). I worked 7 days a week for several years, sometimes 14-16 hours a day. Heck, I remember a few times running a machine all night till someone came in the next AM to relive me at which time I would go up to my office and collapse.
Over the years the physical work and STRESS became harder and harder, making it difficult to concentrate and to get through the day. The first time I really remember a serious changing point was around 1996 or 1997. I went out to give a demonstration to some of my employees on how I wanted the welds ground on a new product we were providing to the medical industry. I use to grind welds all day 10-12 hours no problem. Sucked in more aluminum dust then, well, you get the idea. This time however I couldn't hardly do it. I was shocked and embarrassed and for the fist time I really realized I wasn't the RM I though I was. Now mind you, I have suffered from depression and some anxiety for all of my adult life but this was about the same time the great anxiety started. Within a year I was on medication for it. Basically, I melted down and just wanted OUT! I finally sold the business in early 2001 and moved with my 3ed wife of 5 years to her home town in Indiana.
I tried several new hobbies and projects but the anxiety and pain made it near impossible. I finally stopped smoking in 2003 and started riding a bike again which is when the ankle and knee pain began to really flare up.
In 2004 my wife decided we had to get to the root of the problem and I went to a new doctor right out of school. "I think you have Crohn's" and he sent me to a GI. She said you don't have Crohn's but I will do a colonoscopy anyway. Hum, big as life, Crohn's, complete with pictures in living color. In 2006 quit my part time job and had to have surgery due to an almost complete blockage. The surgeon told my wife it was the worst case he had ever seen. I guess that is what mild Crohn's will get ya after 30 plus years of being undiagnosed and untreated. I felt pretty good for a couple months but the chronic diarrhea still continued. The back, hip, knee and ankle pain started to return as well as the fatigue and lack of motivation and drive.
I applied for SSD disability in 2007 and of course denied repeatedly. I did retain an attorney and got my court date last month. We didn't think it would be a easy road as I was never really diagnosed with AS but did test positive for the HLA-B27 marker and had several x-rays and an MRI that were for the most part non-conclusive. Much to my surprise it was the courts expert doctor who put all the pieces together and claimed in the court room that indeed I had AS and was unable to work and support myself in a full time capacity. I received my notification of the fully favorable decision last week.
I have had problems with my wrist, especially the right, for years but over the last year or so I have been losing dexterity and have been dropping things. Hard to take from someone who made a living with his hands. They did a nerve test and found the problem is actually in my neck. The court doctor thinks this is also AS which has migrated up my spine.
For the last couple years I have been volunteering very part time helping with environmental and science field trips with kids at a local 102 acre center on the edge of town. It keeps me sane!
I wish all of you well. For those applying for SSD I encourage you to consider an attorney. At least for me, if I could have dealt with all that myself I would have gone and got a job.