Hello, this is my story which seems all too familiar to many of us.
My parents and I quickly found that I could never run, jump or keep up with others during physical activity. After any activity I also took longer to recover. Any of these problems were attributed to growing pains. As the pains in my back and legs grew worse in my teenage years, I was sent to the doctor and was told I had scoliosis but the doctor felt most of the pain was made up, that I just wanted attention. This doctor became quickly ignored. Of course this was the early eighties and not much was known about our problems. I dealt with the leg and back pains through high school and technical college, taking days off to rest enough for the pain to subside so I could continue on. A new career started directly after school, but the same problems were still with me, just much more amplified. A few years of doctors, pain meds and physical therapy (which incidentally almost cost me my job) yielded nothing but the diagnosis of bad discs in my back.
A new PT saw this problem and concentrated on my hip pain. He ordered x rays and an MRI. He found that my Sacroiliac joints were inflamed causing a lot of my problems. He said meds and rest would only do so much but hope that arthritis would fuse them together and help with the pain. Well, the SI joints have been off and on for many years. If I do too much, the pain quickly comes back.
So, a few years after the SI revelation the pain suddenly went away one day and my left eye started to hurt. Severe pain, redness, can’t go into sunlight. Family dr. says you have pink eye. Take the meds he prescribes yields nothing, so to the eye specialist I go. Well, he about flips out on me saying that’s the worst iritis he ever saw! I say “what the hell is iritis?” after the training and buckets of steroids he asked when this started. I said right after the SI joint pain went away. He said there is something really wrong with me and said I should see a rheumatologist. I have had Iritis 3 times and in both eyes.
So off to rheumatologist #1. Si joint problems, Iritis, other pains? Bloodwork. HLA-B27 positive. Well, you have AS! After the explanation, I tried to drive home, but had to pull over several times to gather myself. Like others I’m happy I know, but devastated that things will not be the same anymore. So we decided to try Humira. 10 weeks of it made no real difference. I really wasn’t getting the feeling there was much interest in my dilemma, so off to another doctor.
Rheumatologist #2 and the pain mgt. doctors have been trying for several years with no success in reducing my pain which now seems to be from my neck into my Thoracic spine, ribs and chest. I cannot breathe without pain. Yawning, coughing, and especially sneezing will put me to the floor (or worse). OxyContin, Oxycodone, and even Fentanyl does very little to help reduce the pain.
So, here I am. 48 years old, still working, barely holding on and unsure of the future. My next journey is communication with Johns Hopkins in Baltimore, where I was referred to by a health group. They may be the last hope for my working career. I do have to say that I have great support from family and fantastic friends as well as a very supportive company that I work for.
Pennsylvania, United States of America