A.S. Face 1281: Terri Pawlak
I remember the day I went to the rheumatologist, not even realizing what conditions rheumatologists treat, or why my GP had referred me. I remember sitting on the examining table, looking at a painting hanging on the wall beside me. It had “A N K Y L O S I N G S P O N D Y L I T I S” stretched across the bottom. I had never seen, never heard of that term before, and decided it must be some kind of organization.
I described my experience to the rheumatologist. It all seemed so very bizarre, and no one I had spoken to had ever heard anything similar to what I was experiencing — not even my GP! I was waking in the night with a frozen (not cold, but as if paralyzed) pelvis/hips/SI joints and couldn’t get myself up out of my bed. I had to rock myself back & forth with my arms on the headboard, and propel myself out. The pain was horrific, intense like a charley horse, and I would goose-step frantically around and around my house in the darkness, trying to get relief from such strange and engulfing pain/disability! I felt like the Tin Man, with all my joints rusted together, and though I knew movement was necessary, it was so painful I thought that a premature death would be deliverance.
My GP had been treating me for years for “inflammation of an unknown origin”. When I told him I had been dxed with AnkSpond, he said he had NEVER HEARD OF Ankylosing Spondylitis!!! He still does not seem to understand the disease, but fortunately, I have a wonderful rheumatologist.
I have had low back and sciatic pain since adolescence. At age fifteen I missed 6 1/2 weeks of school with a fever and continuous pelvic pain that could not be resolved. I think I already had AnkSpond at that point.
When I was 23, I began having problems with two bulging discs in the low back, and at age 25, one ruptured. I spent a lot of time on the floor with my legs up on the couch or a chair. Other people I knew experienced ruptured discs, and seemed to recover. But my back problems continued and became worse instead of better.
I am now 53, and was officially diagnosed with AnkSpond at age 45, after years of suffering with pain and disability. I am HLA-B27 positive. I’ve been on various anti-inflammatories, steroids, shots, physical therapy, aqua therapy, and chiropractic care over the years, so three years ago I was put on Remicade infusions. This halved the pain, I would say, so I am very grateful for Remicade, but the fatigue by this point was completely unmanageable. I have only three good hours (productive or even social) per day, and that is all. A nap can buy me some more time if I have some social obligation and an appointment on the same day. I live on Light Duty. I had to quit my job.
I would have never known to make an appointment with a rheumatologist, not being familiar with their field at all. How many years would I have gone on getting progressively worse, still believing it was a disc problem and inflammation of unknown origin?
I hope there is much more exposure for this extremely debilitating disease! If one has not experienced back pain/hip pain/SI joint pain, they really have no idea what AnkSpond patients deal with, and how even dressing oneself or brushing one’s teeth can be so very painful or even impossible when terribly flared.
Ohio, United States of America