My name is Matthew Burnette. I live in a suburb of Sacramento California. At the time I write this I am 35 years old. I was Diagnosed with AS when I was 29. I have had what I now know are symptoms since I was in my mid teens. I had assumed that they were simply from me lessening my physical activity.
I started having severe physical pain at 24. These symptoms were streaking pains in my legs, back and occasionally other joints. The issue was that I was not able to determine a cause by any conventional means. My doctors could not figure it out and I was started on pills for nothing other than general pain. Pain that I could not easily mask and pain that made life very difficult. I missed a lot of work and a lot of personal time because I could not physically manage myself in a manner that made it possible. This along with several family deaths caused me to gain massive amounts of weight that ultimately made the pain worse and less manageable. The hardest thing for me to accept was not knowing the cause.
Fast forward to 29 years old and I had started to see a chiropractor (I know now not good for my condition). He initially was confident that my pain was due to pinched nerves or some other somewhat normal cause. After a few sessions he stopped me and said he would not be able to continue to help me until I asked my other MDs for some tests. He advised me that he he thought I might have AS. He took the time to explain what it was and why eh thought I may have it and wrote down the different tests and xrays I should ask for. He also said that if my primary gave me any issues to have the primary call him. Not being enthused about what I might have but happy that I soon may have an answer I made an appointment with my primary MD.
The tests and xrays were ordered, reviewed and compared to some older xrays that my MD group happened to have on file for me. All indications were that my chiropractor was right and that I had AS.
When I told my family and friends and explained it most were understanding. Quite a few had my reaction. They were glad to have a name for what I was dealing with and some direction on how to deal with it.
I have battled through 6 years, actually almost 7 years now as I will be soon 36, of learning and dealing with this disease. I started with some basic slow release pain killers and have tried Humira and Enbrel as well as Methotrexate. I was never able to really find the right medication or combo of medications that worked well for me. I also have tried several different diets and either can not handle them or they did not really work well for me.
4 months ago I switched my medication to Remicade infusions based on a colleague recommendation who also happens to have AS. Where my other medications did not work well for me Remicade has. It seems to be the medicine for me at this point. Others brought my pain from an 8 or 9 to a 5. With the Remicade my pain level is down to 0 most days and occasionally a 1. Really bad days are a 2. I still will never be someone who is extremely physically fit. That si fine. My goal was to be normal and somehwat pain free. I feel extremely lucky to have found what works for me.
The most important thing for me is that I am surrounded by family and friends that understand or at least try to. I am also able to now be more than dad to my 5 year old son. I can be daddy and a playmate. I do not feel trapped in my body and unable to do things that i want to do. I have lost around 120 pounds in the last three years and now feel like I am pain free enough to try and lose the rest that I need to. The weight loss has been about moderation, timing and some small sligth changes away from carbs and sweets in addition to starting to move more and fight being sedentary.I feel lucky for several reasons. I was diagnosed earlier than most people are. I have only slight fusing of my spine at this point (the top 2 and bottom 3). I only deal with minor flare ups that require prednisone and have only mild joint pain besides my spine. The right side of my rib cage has some issues that make breathing while exercising difficult but I can exercise.
My two biggest fears are that my son has AS and that I die young because of it. I do my best to keep myself as healthy as possible and manage this disease as best as I can in regards to me living. I am a huge advocate for myself. In regards to my son i try not to worry but stay aware. I look for signs and keep him as active and flexible as possible. If he has AS he has it. I can not control that. I can control how he is prepared to handle it if he does have it.
I work in a hospital and am very optimistic about AS. I feel like something will come about to help those of us that suffer from it. I know there are people working in it. I am also confident that any surgeries that may be needed due to AS will be improved upon by the time I need them. I am so grateful to have been diagnosed so young and at a point where I am not disabled yet and can still try and hold it off or fight it. I am also grateful and very aware that compared to some people I have met in the AS community I have a very mild case. Even with level 8 to 9 pain I was able to function for a workday and have a somewhat social life most of the time. I was subjected to bouts of limiting physical pain, fatigue, pain, immobility, physical ailments and a crushed mental state. For the people unaware of AS that is a MILD case. I can’t fathom dealing with the level of pain and issues that some people with AS have. I am doing my best to keep myself away from that state as long as I can. I am grateful that I was diagnosed at an age that will allow me to make changes to help keep AS at bay and make my life as happy and healthy for as long as I can.
California, United States of America