Just before you continue reading, I'd just like to point out this could be a bit of an essay so you might want to get a cup of tea or just click off ha-ha.

My name is Joe I'm 29 from Liverpool, England I honestly can remember exactly when I was first diagnosed with AS I think it was about 10 years ago. It all started when I picked up an injury playing football, my ankle swelled up and just wasn't healing, and that was when I was 14. After the injury I started getting pain in other parts of my body and eventually I became extremely stiff and didn't really go out at all.

Once I was diagnosed say at about the age of 20 I was put on pain killers and anti-inflammatory tablets, and I sort of felt normal again, I'd go out worth friends drinking and wouldn't be in that much pain. At the time I had really stiff hips and could not open my legs much but my back wasn't that bad. I took a steroid called Winstrol for a few months which made my upper body strong and this compensated for my legs and hips being really stiff. I felt really good and really fit. (This was a personal choice not prescribed by a doctor)

Eventually I started becoming immune to the tablets and they stopped working as well as they used to, I was still fit and strong but was in pain quite a lot. This led to me going the gym less and losing my strength over the next few years. I then started smoking cannabis as I tried it and it relieved my pain, and also it made me feel better as I was a bit depressed as I was in pain a lot.

After a few years of smoking cannabis I started thinking to myself and at the time I was single, I had become obese, and I didn't have a job. I thought to myself I want to lose weight feel good about myself again get a girlfriend and a job.

I stopped smoking cannabis and lost over 3 stone in weight. I eventually got a job and a girlfriend. At this point in my life I was probably my happiest, I looked and felt good, I was happy in my relationship and was glad to be back in work. My AS wasn’t that bad also I had pain but just put up with it as I wanted to improve my life.

Since I have been with my girlfriend and been back in work I have put all the weight back on and more. I now weigh about 17 stone and I’d say my ideal weight is 12 and a half stone so I’m about 60 pounds overweight. Since I met my girlfriend we always eat fast food and I don’t go out really just sit about on the couch this is why I’ve piled on the weight back on. I’ve also become very depressed I think my work could be to do with this as well as my AS and being so overweight.

Something else that has happened as a result of being depressed is I have developed a gambling addiction which is pretty bad I’ve got myself into a terrible mess over the last couple of years getting myself into about £18,000 debt and completely ruining my credit score and any chance I ever had of getting on the property ladder.

I am currently taking Enbrel anti-tnf injections which is working quite well for me, I don’t tend to take any pain killers unless it is absolutely necessary. At this point in my life now I am the worst I have ever felt. I virtually have no twist movement in my spine and can only bend slightly. Simple things people take for granted like putting on their socks, cleaning themselves after they’ve been the toilet I cannot do any more. Me and my girlfriends relationship is affected as well as when we are intimate my lower back really hurts which means we do it very rarely.

I think a few years back I just stopped caring about myself and just ate food to make me happy. Also when I was first diagnosed with AS I was not given great information about it, either that or I was ignorant and didn’t listen much. I just thought I’ve got AS and there’s nothing I can do about it so whatever happens to me I’ll have to deal with.

My life right now feel all over the place. As I have done virtually no exercise over the last few years as well as my spine and hips being stiff all my muscles have become very stiff. In the last few weeks I’ve started thinking a little differently, I’ve started trying to get my life back on track. I’ve tried going to hydrotherapy which was good the staff were friendly enough but I got the impression they were trying to move me on ASAP and get me to go to a heated pool on my own. I’ve also tried seeing a physiotherapist privately who recommended massage on my muscles to loosen them which may make me slightly more flexible. She told me my calf muscle was so tight it felt like a rock. I have also went to a chiropractor and asked if he could manipulate my spine. He advised me that if I could get an up to date X ray he could do this as long as it had not already seized. I don’t think I have had an X ray since I have been diagnosed so at least 10 years ago and the chiropractor was shocked by this he said my rheumatologist should have sent me for additional scans to see if the spine had started to fuse. I have also tried to see a hypnotherapist to help me with my gambling and depression I think this helped but I need to go to more sessions.

So I have been to a physiotherapist, chiropractor, and a hypnotherapist all privately. If I wanted to go to hydrotherapy now I would have to pay for this myself as I was discharged from the hospital physios. I also see my rheumatologist every 6 months. Ideally I would like to attend all these things but I can only afford to go to one of them.

I’m trying to sort myself out but it seems there are so many obstacles. If I think of anything further to add I’ll add it to the post but I’ll leave it there for now. Does anyone know the answer to this question also?

Can I ask my Rheumatologist who I see on the NHS for an X-ray or MRI scan and get a copy to show my Chiropractor who I see privately?

Thanks for reading

Joe