Back to Stories Index


Alex's Story
Alex Tye

In my teens.
When I was 16 I began to get this uncomfortable feeling when sitting down. It felt as if I was sitting on a bone as if the bone was pressing into the chair as I sat. This feeling would come and go, and I ignored it although sometimes it was a little more comfortable to sit on a cushion. But sometimes I would get this achy feeling in my bottom, but this would come and go.  While seeing a Doctor about something else, I mentioned the above, and the Doctor moved my leg about a bit and said that she thought the bone was not smooth at the joint, which caused the discomfort. She said take Aspirin and that was that.

As the years went by the ache in my rear became worse, but it would come and go so I never really worried too much about it. At 22 I began to get sharp gripping pain in the left side of my face...It was not long before the right side was affected too.

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
Then when I was 25, I woke up one morning with a terrible gripping pain in my back. I did a lot of exercise and the previous day had been weight training, so I put the pain down to a pulled muscle, although while exercising I couldn't recall doing anything to cause it. I had no idea what was to follow. I continued to exercise but the pain did not disappear. In fact the pain spread. I consulted my GP who said to rest it and take Aspirin. Not long after, my shoulder and neck became extremely stiff. My back pain was not getting better and now my neck and shoulder felt very restricted and again it felt as though all the muscles in those areas were constantly gripping and would not let go.

I decided to get my GP to refer me to a specialist.

After a short wait (I was lucky enough to have Private Health care) I was referred to an Orthopaedic Surgeon. He checked me over and after X-rays decided that I would benefit from Physiotherapy, so off I went and had numerous Physiotherapy sessions, but the pain persisted. The physio tried numerous things linking me to several machines that did different things, I even had acupuncture - but still the pain persisted. The physio repeatedly said how stiff my back was and how surprised she was that the physiotherapy wasn't loosening me up. It reached the point where she said that she couldn't help me and suggested I see the Specialist again which I did.

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.

Spine physiotherapy
This time he referred me to spinal physiotherapist. This physio was marvellous, and we worked with each other every other day. My medical bills were horrendous, but the new Physio gave me some faith She was convinced that the areas I was in pain were related. She was sure I could be helped.

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.

On this occasion, the Orthopaedic Surgeon said he wanted me to see a colleague of his, a Rheumatologist.

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!

My web site
My AS web page

Valid HTML 4.0 Transitional