Contributed by: Christi
Reviewed by: Evelyn Corsini, MSW, May 2012
Christi is a 43 year old woman from the state of Washington who wrote this Personal Story in response to the question “Have you ever had to fire a doctor or other healthcare provider?”
I have a type of inflammatory arthritis that is part of a group of diseases called Seronegative Spondyloarthropathies. Eight weeks after my first child was born (I was 30 years old) I started waking in the middle of the night/early morning with excruciating back and rib cage/chest wall pain and stiffness. The longer I stayed in bed the worse it got, so I’d have to get up in the middle of the night and walk around or take a shower. This level of intensity lasted about 4-5 months and then gradually it started to lessen, although I continued to wake in the early morning hours with pain and stiffness.
I also began to have pain and stiffness in other joints as well and my wrists became quite problematic. Over the course of the next 5 years I went to numerous doctors/specialists. There was some minimal blood work done (a CBC which was normal, and an ESR which was slightly elevated), a CT scan, x-rays, and a bone scan all of which revealed nothing of concern. I became very despondent. I felt as if the doctors were not taking my pain seriously and were only attributing it to “new mom back pain.”
Early on, my primary care provider (PCP) had referred me to a physical therapist. He was quite concerned about my situation. He felt that it was possible that I had a disease called Ankylosing Spondylitis (AS). He was the only health care professional that I felt was actually listening to me and taking my pain seriously. I began to research AS and related diseases (Seronegative Spondyloarthropathies) and became convinced that that is what I had.
About 6 years after my initial symptoms of back pain and stiffness (and other joint involvement) I began having symptoms of, and was diagnosed with, Inflammatory Bowel Disease. Because of the research I had done on AS and related diseases I knew that the 2 conditions often run hand-in-hand. I sought out a new PCP and told her my whole story. She immediately sent me for a ton of blood work and referred me to a rheumatologist. The rheumatologist diagnosed me with a Seronegative Spondyloarthropathy.
I was so relieved to finally have a diagnosis for my back and joint pain, and to finally have some validation that yes I did have a disease(s) and that it was not all in my head. Over the 13 years that I’ve had the arthritis pain I’ve learned ways to cope. I have some sort of joint pain nearly every day. Thankfully it’s mild to moderate and I can get by on minimal pain medication. My fingers, wrists, and toes are the most problematic on a daily basis and I still have back pain and stiffness particularly in the morning. I have flare ups of pain and stiffness in my neck, shoulders, chest, rib cage, feet, and jaw that come and go and typically last from a couple days to several months.
My rheumatologist would like to put me on an immunosuppressive drug to control the inflammation, but for now I’m opting out and using other ways to cope with the daily pain and stiffness. I use physical therapy when I’m feeling particularly stiff and achy. I do light aerobic exercise 20-30 minutes about 5 days a week. I alternate between sitting and standing all day long and I take “stretch breaks” throughout the day. I use a heating pad, splints, and compression gloves when needed and I bought myself a couple of pairs of good supportive shoes. Things like moving furniture or working out in the yard always make me achy the following day so I try to pace myself with those types of activities and not do too much at once.
Through all of this the thing that I have learned is that you have to be your own health advocate. Research your condition. Find out all you can about it. The internet is a great resource. Message/Support boards are also a great resource for talking to others who’ve had similar experiences. Doctors are only human, they don’t know everything. If you feel you aren’t being taken seriously then find another doctor.