My Diagnosis 

18th February 2014. That’s the day my life changed forever.

I remember getting the phone call. “I’m sorry but your x-rays show partial fusion in the right SI joint so you don’t need an MRI, you have Ankylosing Spondylitis.” It was something along those lines. I don’t remember, because I was actually so relieved I didn’t need an MRI that I didn’t really register the diagnosis I had just been given, why? Because I was already suffering from anxiety, claustrophobia.

I’d had so many MRI’s in the previous 14 years but the last one I had terrified me. It was a scan of my head which was put in what I can only describe as a cage, so I could not move my head. It had a mirror so I could see the technicians but I still did not feel safe and wanted to get out. I managed to finish the scan but it was the last one I ever had.

I don’t know if that started my claustrophobia, alot of other things had also happened in my life, like being made redundant after 11 years of employment. It doesn’t matter, the point is this diagnosis of AS totally didn’t register in my head.

I think it actually took months for it to really sink in. I had joined a local self help group where I met lots of people with AS and decided to have swimming lessons. Swimming was recommended as a good exercise for AS, I knew how to swim I just wanted to make sure I didn’t do myself an harm. I was doing lots of things that I would never do alone so was great for my anxiety.

Then it hit me 👊🏻 it suddenly sunk in. I had a condition with no cure which ment I would be in pain pratically always unless I managed the condition and eventually be fused along the neck and spine meaning I’d be hunched over or in a wheelchair ♿. The only thing I could do was keep moving, exercise but pace myself, easy right? I would suddenly start crying, sobbing, my life was over, what had I done to deserve this? Why me? Then the anger, the dispare, then it was a cycle of emotions. I still have those fears, I don’t think they will ever go away but I’m not crying every night, I’m stronger.

The pain was becoming worse and the morning stiffness was terrifying. It felt like somebody was holding me down by the hips. It was taking me an hour to slowly edge myself out of bed. How did I think for so many years that this was just another back ache? Yes for years I ignored the stiffness which every morning was becoming worse. Why? Because for nearly four years when I was having mysterious pains in my right rip, nobody knew what was wrong. Eventually the pain went with exercise but it was a few years after I stopped going to the gym that the stiffness in my lower back started in the mornings. I had always suffered with back pains since I was teenager so I ignored it. I knew I’d be given drugs and that I’d be referred for physio, I knew all the exercises by now.

When I eventually went to my GP in 2014 he referred me to Rheumatology department at my local hospital and by 18th February his suspicions were confirmed.

ADVICE: Don’t ignore anything you’re body is trying to tell you!

I guess this is a good explanation of the diagnosis journey from My Chronic Pain Team

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