A.S. Face 0832: Cassie

A.S. Face 0832: Cassie

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My name is Cassie and I am 18 years old, living in Brisbane, Australia with Ankylosing Spondylitis.
I have always had back troubles that would come and go. Working in childcare, I thought this was the cause.
Late 2012 I started to get persistent pain that slowly got worse. Nothing would make it any better. The doctor tested my blood, I was HLA-B27 positive. He said this could be perfectly normal but alongside with the symptoms it was a concern. He sent me away with no more than a referral to a specialist, saying it could take up to a few years before I was seen. The pain got worse, my spine started to curve, and it would be impossible for me to get up in the morning.
It was like my spine was “stuck” in this curved position and my muscles had tightened up around the spine, making it impossible to walk. People would tell me to “get a better posture and stop leaning” If only they understood it was out of my control. I very quickly got severe constant stabbing pains in the joints on my right side from my hip down to my toes and have now lost all feeling in my right leg and am forever getting hot flashes in my leg that feel like it is on fire.
My doctor kept sending me away every time I came to him until he could see how much it was affecting me. I managed to get into the Chronic Disease Management Plan and was given three free physio appointments. The physio gave me some exercises which worked for a short time, then the curvature got worse so I was unable to complete the exercises. The only thing that worked was for me to walk around all the time, and not sit down. I couldn’t sleep as I would wake in excruciating pain and getting to work was difficult.
One morning the pain didn’t settle with walking and the muscles tightened so much around my back, my boss sent me home. I couldnt even make it up the stairs so off to my first of many visits to emergency ward in hospital. They told me I needed to go to my doctor to get an MRI, drugged me up and sent me home. In the mean time my physio ordered me a back brace which seemed to take forever to arrive. When it finally arrived I had to travel an hour on a bus (torture when you’re in pain) to get it as they sent it to the wrong clinic, only to find it was not the right size. Re-ordered another one. I went to my doctor who shook his head and told me that the hospital needs to refer me for an MRI and sent me home.
A month later it was back to emergency again as I lent to get something in the shower and felt my leg heat up and I fainted. I was in so much pain and I felt so faint I had to get my partner to carry me into bed while the ambulance arrived. The doctors poked and prodded, drugged me up and wrote an angry letter to my doctor saying he needs to send me for an MRI. Again two days later back off to the hospital, will the pain get any better? They gave me prescriptions for lots of painkillers that basically knocked me out and told me to take regular panadol and nurofen to manage the aches and pains in order to be able to work. Nothing helps, the pain is always there.
I have finally gone to get an MRI after 7 months of waiting and as horrible as it was, I am so glad I will finally get some answers and the help I need!
Every day is a struggle and no one seems to grasp just how bad the pain is, so it is so hard to explain why I am always worn out and walking crooked. Without my partner Jesse I don’t know what I would do. He is so helpful- Getting up at 5 am to help dress me and preparing my breakfast every morning, spending tireless nights heating water bottles and wheat packs and rubbing ice gel into my back, holding my hand through the pain and being patient and understanding when I am having a hard time.
After the MRI, I saw a rhuemy. As most of you know, Chronic Illness can be very confronting for some doctors. I found a rhuemy, that believed, because I was ‘Young and Healthy’ I do not have AS, despite my symptoms, family history, and HLA B27+ diagnosis. Then at the end said, it may be AS, but i would need to wait until I was older and worse off to be diagnosed. I didn’t understand, I had this horrifying pain and it couldn’t possibly be ‘worse off’ than this. He said I would need to start fusing, have eye problems, or immune issues. I tried explaining, I already have chronic infection, chronic fatigue what more could they want. He reluctantly referred me on to a surgeon, saying “I will refer you to a surgeon, but i can’t see any reason whatsoever that any surgery would be necessary. I got a call, We need to see you as soon as we can, no waiting list. You need surgery in the next six weeks. Didn’t help that my GP was just as ignorant. I went to see him to show him the letter about surgery, and he said, that may help, but the rhuemy has said it is just unrelated common arthritis, nothing we can do. Coming from the doctor who initially assured me I had AS and that common arthritis is impossible for someone of my age so I need not think of that. I had surgery for split discs in October. HUZZAH! The terrible, terrible, terrible nerve pain that was so sharp and debilitating has ceased. Was able to walk to the toilet with a walker the same day as OP, and home 3 days after with no issues. After a somewhat zombie-like state of sleep and a medical high, I started to feel incredible. I could walk without pain, get up to the toilet and wipe myself. Put my OWN socks on. As soon as I could I started physio and Wii Fit Yoga every day. It was so strange to be without pain. I walked as much as I could and let the good times of being independant once again, roll.
Our bodies have this amazing ability to ‘adjust’ when we live with chronic pain. I came to live with the nerve pain for over 18 months so I just got used to it. My tolerance grew. So for that to be gone, I couldn’t even explain the difference.
Nearly six months on from my OP, and I am starting to leave that brilliant ‘no pain’ euphoria. While my pain isn’t debilitating like the pain of slipped discs, it is constant and dragging. I feel like a zombie. Wake up in pain, after next to no sleep, and feel like I am dead, wake up after a full nights sleep, feel the same. Constantly tired, constantly feeling congested in the chest and this ‘sick feeling’ over my head. After absolutely no hard work, after going to the toilet and getting dressed, I feel like I need to go back to bed to regenerate.I am afraid to go to the doctor, because they keep sending me away telling me to exercise it off. I’m not looking for pain killers, just some answers. I have reached my limit of exercise, I ride my bike every day, swim and yoga also. IT DOESNT WORK! I am at a point where I cannot get to sleep for more than 20 minutes a night and I have had to ask for time off from work to regenerate. Surprise, surprise, the time off didn’t make a lot of difference. But I am more understanding of the fact, that I will always feel this way, so I can deal with it a bit better. My incredible boss and workmates have been amazing through it all. Couldn’t ask for a better work family. I have cut my hours down as I just don’t feel I can do it. When I explain that I am in pain, a lot of people gasp and ask ‘DIdn’t the surgery work?’ It did, but this is not the same. I knew that the surgery wouldn’t get rid of AS symptoms, just the nerve pain. They don’t understand, I don’t expect them to understand, because I don’t even understand. Most doctors I visit, don’t understand. I just hate to feel like I am lying when I explain everything. It’s confusing when I don’t have a paper diagnosis, but have been told I have this disease, have the symptoms of this disease. I can’t hide the fact I am constantly feeling ill, even though on the outside I look OK. Hard to explain how i know I have this disease, and been told by a doctor I have this disease, but they cant put it on paper until I am worse off, then talking to those who have fused after 20+ years of chronic pain, but are still struggling to get an official diagnosis, I feel as if I will always seem as if I am explaining a lie to my colleagues, friends, and family. As if I am exagerating my symptoms, when I am actually, making them littler than they are. How could I be so sick at such a young age? It is so confusing for my friends and family, for me. All I can ask for is support, but I can’t do that without recognising it is real, but that is so hard to do when you don’t have any back up. I NEVER complain, because i feel ill every day, I am in pain every day. So when I am with a friend who is constantly complaining about feeling ill because they dont sleep properly, they dont eat right and they dont do any exercise, I want to hit them upside the head and tell them to change their lifestyle. I can’t. I do all the right things, healthy eating, exercise and sleep, and I still feel terrible. I minimise my pain, so everyone else doesn’t have to listen to my complaining, but I hate to know that no one really will understand.

Australia