In my teens.
An Oral Surgeon called in TMJ and basically told me to rest my jaw, stop chewing gum and eat soft foods. I was also given a mouth guard, but despite following his advice religiously, the pain in my jaw did not go. I began to accept that this wasn't going to go away and just accepted it would be there. The pain would be worse some days, better others.
Enter Back Pain
I decided to get my GP to refer me to a specialist.
This time I told him about the pain in all the other areas. This now included gripping pain down my left leg especially the calf muscle. The side and underneath of my foot were painful, sometimes feeling awkward to walk on. I also mentioned the TMJ and also for the first time told the Doctor about my possible Meniere's Disease (disease of the inner ear) for which I was undergoing tests. I also mentioned the pain in my bottom, which was now persistent and did not go away as it had when I was younger. I told him EVERYTHING!
I was very worried that the specialist would think me a hypochondriac after running off this long list of areas that I was in pain. But I felt I had to tell him everything because I was desperate and in constant pain.
After a half-hour of intense physio I was little looser, but 10 minutes after leaving her I would be as stiff as a board again and began to get disheartened. In desperation I went back to see the Specialist, although at this point thinking that was it. I had reached the end of the line.
When I saw the Rheumatologist I told him everything. He examined me, took X-rays, listened and then said "I am 99% sure that you are suffering from something called Ankylosing Spondylitis" and he wrote it down for me.
He explained what it was, what the outlook for the future would be. He confidently answered my questions and totally restored my faith. He explained that doctors see thousands of people with back problems, but very few are AS, which is why it can be difficult to diagnose. He wrote my GP a letter asking to prescribe me Diclofenac and made an appointment to see me in a month.
As soon as I got home I checked the Internet and read up about it. I was beginning to read other peoples stories, and when I saw a Pain Map highlighting the areas AS can affect I couldn't help but think, "that's me!". Everything seemed to fit.
After two weeks the Diclofenac had helped. For one week the pain had reduced considerably. Although the Diclofenac doesn't appear that it will help me forever and ever, I now know what I am facing and finally have hope. With so many other NSAID's to swap too I have hope.
On my last visit to the specialist after talking some more he confirmed that he was now sure I had AS. For me it was vitally important to have a name for what was wrong. For so long knowing that something was wrong but having no name to call it, was very distressing. I was extremely worried if I told people about all the areas of pain I was in, that people would think I was crazy, especially as I have Meniere's disease as well.
The KickAS site has helped and I have made an email friendship with Paul (p smokey) which helps to be able to directly talk to another sufferer.
I for one will continue to KICK AS!