My name is Carrie Mayer and I am from Knoxville, Tn. and this is MY AS story.
I am 37 now but my symptoms started back in my early 20′s. If I really think back, I believe it might have started back when I was in middle school. I lived on Tylenol Extra Strength (2 in the morning, 2 at night) all due to headaches and neck pain that never seemed to quit. Next was my hips, knees, ankles – then wrists and hands started.
About 10 years ago I started bracing anything and everything I could. My legs hurt so bad stairs were not an option most days. My hands hurt to the point where I couldn’t even pick up a pen, let alone write or type. My neck could barely support my head and my skin sensitivity was so high, clothing was painful. My depression and frustration was at an all time high. Sitting on the side of the bed, crying because it hurts to lie down and knowing that it will just be worse in the morning is disheartening to say the least.
My GP said once that I might have a degenerative joint disorder, but did not think it was possible for my young age and kept trying to get me on anti-depressants when I complained of my pain. Finally I decided to see a Rheumatologist, in the hopes that he would have a different diagnosis other then depression. (I was not in pain because I was depressed, I was depressed because I was in pain.) I went in expecting to hear fibromyalgia and came out hearing spondylitis. Sponda-whata? – the reaction I had as well as the reaction I get from people that I talk to about is all. I was not told what type I have but I believe it is Undifferentiated Spondyloarthropathy - Undifferentiated Spondyloarthropathy (USpA) is a term used to describe symptoms and signs of spondylitis in someone who does not meet the criteria for a definitive diagnosis of AS or related disease. A person with USpA may have signs and symptoms of spondylitis that do not quite fit into a specific category. For example, someone may have iritis and heal pain, as well as be HLA-B27 positive, but initially not have the SI joint or spinal involvement associated with ankylosing spondylitis.
When Meds did not work – or at least not for long – I looked into Alternative Ways, and that has helped me alot. Massage, Chiropractic, Foot Baths and Herbs - but I still have some days when it all comes back.
My biggest frustration – besides the days of pain – is trying to explain what it is, how it works and what it does. Trying to get others to understand and not just think “damn, suck it up!” is hard. They just don’t get it. Also, I know that as good as I feel today, tomorrow I might not be able to get out of bed, but I will and I have to – I have to go to work, I have to act like nothings wrong, I have to be “normal” – and knowing that it will never get better, I will never be cured or live another day of my life without pain of some sort and fighting that depression makes some days hard. But having a Boyfriend that has watched my fight for several years and has seen me cry helps. HE understands. Also, the support groups I have found on FaceBook have made me feel like I am not alone in my struggles.
I hope that my story helps others to understand us.
Knoxville Tennessee United States of America