My health story and psoriatic arthritis & myasthenia gravis pain relief
Bonnie's Ankylosing Spondylitis Story: A Life Well-Lived
Ankylosing spondylitis pain doesn't have to keep you from doing what you love. Learn how one woman with spondylitis stays motivated to live life to the fullest.
By Chris Iliades, MD
Medically Reviewed by Pat F. Bass III, MD, MPH
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Ankylosing spondylitis is an inflammatory disease that usually develops in younger people, especially men.
For 80 percent of those affected, spondylitis pain begins before age 30, and once you develop this condition, you have it for the rest of your life.
According to the Spondylitis Association of America, spondylitis is at least as common as rheumatoid arthritis, but often goes unrecognized because some doctors may not make the connection between young people and arthritis, presuming that their pain isn’t due to something serious.
Bonnie Smith's story shows that women also get ankylosing spondylitis, and she's proof that spondylitis symptoms can go on for many years before a diagnosis is made.
"I can't say if the symptoms were early, because I had ignored them for years, living on Advil and Excedrin, learning to fight them as best I could on my own," says Smith, a 66-year-old retired English teacher in Hettinger, N.D.
“Finally, in the spring of 2007, when I could stand the back pain no more, I basically demanded back X-rays from my primary care physician. The X-rays told it all.”
The Double-Edged Sword of a Diagnosis
Ankylosing spondylitis is a progressive type of arthritis that usually affects the lower spine, causing pain and stiffness in the back and pelvic area. The exact cause is not known, but about 95 percent of people with spondylitis symptoms, including Smith, inherit a gene that produces a protein called HLA-B27. Diagnosis is made after taking a personal medical history, X-rays, and a blood test for the HLA-B27 genetic marker.
"After learning I had the HLA-B27 gene and after being diagnosed by a rheumatologist, I was at first relieved to learn that I hadsomethingafter many years of not feeling well, but then I was frustrated to learn that people seemed to know so little about it," Smith says. "I found out that I must have had it for decades, because I have growths on the inside and outside of each vertebra, and my sacroiliac joints (between the pelvis and the sacrum) are completely fused."
Daily Life With Ankylosing Spondylitis
Ankylosing spondylitis tends to get worse with rest — spondylitis pain and stiffness are usually at their worst in the morning — and better with activity, so Smith quickly learned to keep moving throughout the day, starting with a morning routine.
“I’ve gotten used to waking up feeling slow, sluggish, and achy, sometimes all over,” says Smith. “After breakfast, I try to use the Spondylitis Association of America's recommended . Some days, I have to rest again, or sit around until I can get all the parts moving, but most days I'm ready to go after a shower and exercises."
Smith tries to prevent ankylosing spondylitis symptoms from limiting her by making small adjustments. “I have learned that I need to keep moving at various jobs and at my volunteer work to keep my body flexible," she says. "I can go at a pretty good clip for an hour or two, but then need to stretch out or lie down flat on the floor to give everything a rest before I continue."
Of course, every person’s experience with ankylosing spondylitis is unique — symptoms may come and go, or symptom flares may become more frequent over time. But one step that helps everyone, as Smith found, is developing a routine of posture and flexibility exercises, especially strengthening and range-of-motion exercises.
"I use the recommended Spondylitis Association of America stretching exercises every other day, and try Pilates on other days,” she says. “I enjoy hiking and heavy yard work, and get a lot of exercise out of the volunteer work that I do. I have also been singing all my life and feel that keeps the breathing apparatus working well.” People with spondylitis often experience chest pain due to decreased chest expansion.
"Exercises are particularly effective when done in a hot shower, a tip I learned from one of the members of our Northern Great Plains Spondylitis Association of America educational support group,” Smith adds. “It's difficult to say precisely how often the symptoms flare. It seems they never really go away. We added a 4-inch memory foam mattress to our bed — that helps a lot. I also sleep with pillows of various size and substance."
Tailoring Ankylosing Spondylitis Treatment
There is no cure for spondylitis, but spondylitis treatment helps keep symptoms in check. Medications, an important component of care, may include non-steroidal anti-inflammatory drugs (NSAIDs) like indomethacin, and disease-modifying anti-rheumatic drugs, or DMARDs, like methotrexate.
As Smith’s experience shows, you may need to work with your rheumatologist to tweak medications until you find the right combination, which may also need to be updated as time goes by.
"For a couple of years, I've been on indomethacin," she says. "For pain, I also use Tylenol Arthritis 650 mg, two at a time, when needed. Frequently, I use heat wraps, Aspercreme, or Biofreeze. Hot baths and a heating pad work, too.”
Smith’s rheumatologist and gastroenterologist recently started her on methotrexate.
Staying Positive With Ankylosing Spondylitis
To say that Bonnie Smith has not let ankylosing spondylitis slow her down is an understatement. "My faith, my friends, and my family keep me positive," she says. "If I stop to look honestly at my problems and conditions, I would be overwhelmed, so I don’t dwell on them. I was busy before in my professional and family life, and I will stay busy as long as I can."
Now retired after teaching for 35 years, Smith is chairman of the Hettinger Area Key Ingredients Steering Committee (created to bring the Smithsonian traveling exhibit,Key Ingredients: America by Foodto her hometown) and vice president of the Dakota Buttes Historical Society Museum.
"Starting the first Spondylitis Association of America educational support group in the northern Great Plains keeps me positive, too," she says. "I am determined to 'burn out rather than rust out,' and will do as much as I can, for as long as I can, for as many people as I can, in whatever ways I can."
For anyone struggling with the challenges of ankylosing spondylitis, Bonnie Smith's story offers plenty of hope. Staying interested and engaged in the world are key to managing spondylitis — and enjoying a happy life.
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