HLA-B27 is the gene doctors look for when testing for Spondyloarthritis. The sufferers of this disease do not test positive for RA or any other known arthritis. Most will remain undiagnosed long after effective treatment could have taken place. The main symptoms happen in the exact four areas of my body that are slowly falling apart and cause me much pain and suffering. Lower back and neck which always feels bruised, stiff and swollen. Eye inflammation which causes vision problems and can cause a loss of eyesight over time. Arms and legs, pain in the ligaments and tendons that attach to bones. Inflammatory bowel diseases causing extreme discomfort and all those terrible things associated with crohns, this is obvious and unfortunately, one of my major complaints.
Doctors have tried to stuff me into disease categories that never felt right and always proved to be wrong by an eventual ruling out of each. Once ruled out, my specialists would drop me and send me on to the next specialist. I quit trying to discover or define my disease a couple of years ago, tired of wrong or no answers. No matter how much I try to ignore or pretend, I remain in pain and suffer a great deal. It is undeniable that I go from feeling great to feeling like I’m dying without notice. I can see perfectly fine one day and be completely blind the next. My ups and downs would come without warning, or so I thought.
Letting go of doctors and specialists I saw several times a month for five years was liberating. It allowed me the opportunity to stop speaking the words that were being used to describe my body by people who really just didn’t know. I tried my best to fit into the descriptions given by my doctors so that I could have answers. Not knowing what it was led to the need to know it was something, to prove that I am not crazy nor do I exaggerate. My body has been trying to tell me something for years and years, I just don’t know how to listen or what to listen for.
There are clues, things that happen when other things happen. Like the fact that when I eat certain foods and drink certain fluids, my inflammation will be much worse and tend to take on now well-known cycles. There is a beginning, middle and end then a repeating several times until the offending thing is gone. Dairy, gluten and alcohol, movement or lack of movement. These are my nemesis, those that send my body into a whirl of repetitive angst and suffering.
Some of the facts.. Spondyloarthritis differs from other types of arthritis in that it involves the “entheses.” These sites are where ligaments and tendons attach to bones. Symptoms present in two main ways. The first is inflammation causing pain and stiffness, most often of the spine. Some forms can affect the hands and feet or arms and legs. The second type is bone destruction causing deformities of the spine and poor function of the shoulders and hips.
One thing we know for sure, I have spondylosis in my upper back and neck. Growths of bone that have formed from my spine inward, toward my spinal canal causing a pinching of the spinal nerves which then causes peripheral nerve damage and other problems. I can have surgery to fix the immediate issues but that will not keep the spondylosis from returning over time. Having spondylosis in my neck is important to diagnosis, it would make sense to check for the HLA-B27 gene, wouldn’t it? Why no one did is beyond me.
I have always felt as though my arms, legs, neck and back were being pulled apart or that my tendons and connecting parts were under constant tension. I would describe it as a marionette or puppet on strings being pulled in odd ways and tension of the wires kept tight. Or more like one of those old-fashioned baby dolls whose arms and legs were attached with elastic from each appendage joined together inside the center of the dolls body, tied in a knot. When you pull on an arm or leg, you can see inside, all of the tension caused by the elastic and knots is apparent. I understand tension and must make room for it everyday. It limits me and causes extreme problems that I must acknowledge or suffer because of. If I push past the pain and commit to movement anyway, I will suffer a great deal later. I spend a lot of time trading off or bartering with movement. If I walked much at all in one day, I know the next day will be excruciating. If I want to walk or do anything physical on any day in the future, I must keep my movements to a minimum for many days before. If I need to wash my hair, I have to wait until I have a really good day without extreme pain but I know that simply washing my hair will end the good days and cause the cycle of pain to begin again.
Answers are priceless when the questions are ruthless. I will continue to listen to my body and I will get through anything I must. If I don’t ask the questions, no one will, hence this note. I write it for myself, so that I can remember that I am not crazy and that I do not exaggerate.