PATIENT VOICES

My Ankylosing Spondylitis Journey: Connecting With My Rheumatologist

I’ve been living with ankylosing spondylitis (AS) for the past five years. AS is a form of severe, chronic arthritis that affects the spine and other joints, and the onset of its symptoms was one of the most harrowing experiences of my life. Finding a rheumatologist, a doctor that treats autoimmune diseases affecting the joints and spine, was the first step towards regaining a sense of control over my own body.

Being active is in my blood. I grew up playing sports all year long. I rode horses and bikes, waterskied, played softball, did gymnastics, and attacked any sport I could find. At 40, I decided to become a runner. My lower back would sometimes ache after a run, but I’d go to the chiropractor, buy a new pair of running shoes, and never gave it a second thought.

In 2013, I ran a half marathon. My back and hips were sore for days, but I assumed I just didn’t stretch enough. A week later, I ran a 5K and was in terrible pain afterwards. I decided then that I needed to see a doctor. The doctor suggested physical therapy, so I spent the fall of 2013 going to a therapist three times a week. But despite my trainer’s and my efforts, my symptoms didn’t improve. We were both really frustrated. By December, I told my therapist that I was done with the visits, since they clearly weren’t working.

December 20th, 2013 is a day I will never forget. I woke up that morning with such severe chest pain I could barely breathe. When I tried to move my arms, I felt electric shocks of pain throughout my body. I could barely sit up. I was convinced I was either having a heart attack or I had breast cancer. I immediately went to my primary care doctor, who then referred me to an emergency orthopedic clinic. Both my primary care doctor found nothing conclusive on x-rays or through blood work, and the providers at the clinic weren’t able to diagnose my symptoms.

I spent the next two weeks after that episode in my recliner chair, unable to do much of anything. During those two weeks of nearly constant pain, I asked friends and family for advice. My cousin happens to be a rheumatologist, and insisted I find one who could see me as soon as possible. I had no idea what a rheumatologist did or how one could help me, but I made the appointment.

I had my first visit in January. The rheumatologist I ended up working with listened to my story, examined me, and assured me she knew my pain was real, and that she thought she knew what was going on. The results of my blood work confirmed her suspicians. A week later, she called me and said, “I was right. You have ankylosing spondylitis. Please research it and be ready to have a conversation about your options at our next visit.”

At the time of the phone call I was dumbfounded. Anky what? But as I researched, I felt empowered. With my rheumatologist’s help, I was not going to let this disease own me.

AS is difficult to treat so we tried a variety of drug therapies before finding the right one. My doctor started me on several anti-inflammatory drugs but one made me extremely tired and the other didn’t alleviate the pain. We found one drug therapy that gave me real relief for over a year until my inflammation worsened and I started getting pain in other joints. I’ve now been on an immunosuppressant used to treat inflammatory diseas for just over a year and it’s working well for me. I also take daily two other medications used to reduce arthritic pain.

I see my rheumatologist every six months unless I’m in pain or switching treatments, and we have an outstanding relationship. She answers my questions and gives me confidence that I am in charge of my care. I have learned how to both clearly communicate my needs and listen carefully to her explanations and suggestions.

AS has affected my life on a daily basis. I went from being go go go all the time to having to think about everything I do. No more impact exercise like running. And despite treatment, my body has continued to rebel. I’ve had surgery on a spinal disc, two nerve root blocks, and two spinal fusions. I often use a scooter to get around, and my life seems like a never-ending string of doctor appointments and surgeries.

But AS has also brought me closer to my husband and friends. I’ve had the honor of becoming a leader in my local AS support group chapter, where I can help other AS patients navigate such a difficult illness. Having a rheumatologist treating me gives me even greater insight I can share with this group. Most importantly, I don’t take anything for granted. For each day I can get up and go, I am grateful.

Gail Wright lives in Buffalo Grove, IL, and is the co-leader of her local AS support group.