A.S. Face 2210: Roselyn Tolliver

March 1, 2018—Yay! I do have a chronic, debilitating, painful, and incurable disease! My lifelong nightmare was over when I was diagnosed with Ankylosing Spondylitis and prescribed medication to help prevent, instead of just treat, my symptoms. This happened 41 years after my first symptom as a child, and almost 30 years after I began having chronic pain and other symptoms in parts of the body known to be affected by AS. Although some of my pain began after very minor injuries, I believe the chronic and systemic inflammation caused by AS was at the root of my health problems.

It’s genetic, man: My father and youngest brother, both named Rubin, had AS. My father’s symptoms began at age 18 with the first of many bouts of uveitis. He soon developed unexplained knee, shoulder, back, and neck pain. In later years, he had GERD, a hip replacement, and heart valve problems. His thoracic spine fused completely when he was in his 50s, and when he was 76, he fell and broke his neck in five places. He wasn’t paralyzed by the accident, but he had to wear a halo brace for nearly four months. He died at age 84 of a subdural hematoma following a stroke.

“Little” Rubin’s battle with AS began with ulcerative colitis, which was initially misdiagnosed as IBS. He also had chronic back and neck pain with very limited flexibility; he appeared to be fused like our father, but I don’t know for sure if he was. Little Rubin eventually developed primary sclerosing cholangitis and bile duct cancer that I believe were complications of his AS-related colitis. Sadly, he passed away at age 50—just six months after our father died. My story is similar to theirs, but like all AS patients, it’s different in its own way. The following is a timeline of my journey with AS:

June 1977—First shots fired: I was a healthy and active 12-year-old when I developed a cough that lasted three months. I was diagnosed with pneumonitis, or lung inflammation. Further tests showed swollen lymph nodes, and the report prophetically advised that if I developed other “symptoms of a chronic illness”, more tests should be done. Three months later, I developed persistent neck and shoulder pain, but my pediatrician didn’t connect these new symptoms to the previous ones.

Two years later, I had unexplained chills, fever, and night sweats for three months. Then, in 1981, I began experiencing unexplained, severe fatigue. I could hardly get out of bed and had low energy during the day. My father was an amputee who remained active despite having only one leg and AS, so he accused me of just being lazy. I soon found that nicotine and caffeine helped me “manage” my fatigue, but after I gave up smoking, sodas, and coffee many years later, it came right back.

May 1989—Release the Kraken: I enlisted in the navy, and during bootcamp I began having severe stomach pain and chronic constipation that was diagnosed as irritable bowel syndrome (IBS). I also developed trouble breathing, and tests revealed restrictive lung disease. Months after bootcamp, I twisted my back slightly but developed persistent, severe pain that was diagnosed as chronic mid-back strain. Just two months after I injured my back, I hyperextended my knee and was diagnosed with chronic right knee strain. The possible connection between my sudden and chronic pain, digestive issues, and breathing problems was never investigated while I was in the service.

December 1992—Say hello to a new pain: One month after my son was born, I felt a severe, sharp pain in my left hip that shot down to my knee. I was diagnosed with sciatica, which is nerve pain that starts in the low back. I later developed it on my right side, too. Regular stretching and massage help, but I still get flares several times a year that hamper my mobility.

1998—Ah, my neck! When I was 34 years old, I was rear-ended, and even though the damage to my car was very minimal, I developed severe neck pain. Despite having had no previous neck injuries, and no prolonged neck pain since I was 12, I had herniated discs in three places. The natural curvature of my neck had straightened as well. The pain from that injury resolved, but I still have unexplained, extensive damage to my cervical spine and recurrent neck pain.

1999—Brace yourself: I started to get numbness, tingling, and pain in both wrists and hands that was diagnosed as carpal tunnel syndrome. Shortly thereafter, I was diagnosed with gastroesophageal reflux disease (GERD). I reduced my digestive symptoms with medication and dietary changes, but they have persisted.

May 2000: Missed it (a diagnosis) by that much: After driving cross country to help take care of my father, who had broken his neck, my back pain flared worse than it ever had. The x-ray showed “sclerosis” of my sacroiliac joint. I later learned that sclerosis (thickening or hardening of bone) is how sacroiliitis, an AS marker, can appear on an x-ray. Based on my family history of AS, he tested me for the HLA-B27 gene, which is strongly associated with the disease. When it was negative, he told me I didn’t have AS and diagnosed me with sacroiliac joint dysfunction instead. He treated me with physical therapy, NSAIDS, and narcotics.

January 2005—…and broke my sacroiliac: I bent to lift a picnic table bench when I suddenly felt such a sharp pain near my tailbone that I couldn’t stand back up. This time, another doctor diagnosed me with facet joint arthropathy and low back sprain and gave me my first spinal injections. I was off work for five months, and it was then that I began to realize that the biggest struggle of my life would be living in my own body.

Fall 2008—Deterioration: My life had become a pattern of manageable pain periodically interrupted by very painful flares. Now a single mother, I started working full time as an auto claims adjuster. Within months of driving hundreds of miles a week, my neck, back, and wrist pain flared up worse than they ever had. I was on disability for almost two years this time, during which my father and brother died. After their deaths, I became afraid I had AS, so I saw yet another doctor. This time, the x-ray of my sacroiliac joint was “unremarkable”, and I was still HLA-B27 negative, so he told me I didn’t have AS. He explained that my entire spine simply had degenerative disc disease.

2010-2017—I’m a voodoo doll: During these years, I developed several new recurring symptoms: tenderness and pain in my chest, outer hips, thighs, thumb, heel, and elbow. I became depressed dealing with all these issues, and I’m sure my emotional state worsened my physical symptoms. I switched to a desk job, but sitting all day aggravated my back symptoms even more.

Throughout this 8-year period, I managed my pain with opiates, lots of cortisone injections into ten different joints, and seven joint surgeries. I could no longer take NSAIDS by mouth after getting diagnosed with chronic gastritis (stomach lining inflammation), but by then they didn’t help much anyway. I also spent a small fortune on massages, heating pads, ice packs, braces, seat cushions, and Biofreeze spray. I got diagnosed with Fibromyalgia in 2014, but the treatment for it had no effect on my joint and digestive symptoms.

Not surprisingly, working full-time became impossible, so I retired on disability in 2014. Fortunately, I’d managed to earn my master’s degree in 2010 and started teaching English as a Second Language to adults parttime after I retired. I love what I do and helping my students has been a great diversion.

2018—Sick and tired of being sick and tired: After nearly 30 years of chronic pain, digestive issues, and breathing problems, I’d gotten used to living with regular discomfort. However, I was growing weary of the flares, which were occurring more often and lasting longer (and now included debilitating fatigue and feverishness). Even the stiffness in my back in the morning, which used to be sporadic, had become a daily occurrence. It was like the first day of the flu every single day. When I could take it no longer, my only option was to go to the doctor for a Toradol (an NSAID) shot.

I was also an emotional wreck. Relieving stress was difficult. I had no energy for exercise, and leisure activities I’d previously enjoyed now increased my pain. I avoided social activities because of anticipated pain, and I was also tired of being housebound “socializing” through social media. Furthermore, I was angry that although I was well-educated and experienced, my health had killed my career and stifled my earning potential. Worst of all, my ill health had put a strain on my marriage and revealed how unsupportive some of my friends and family were. I was even called a hypochondriac by my own mother, who had a husband and son with similar issues. I became despondent and occasionally suicidal.

Fortunately, when I reached the end of my rope, there was…Google. It started when I had a CT scan for an unrelated condition. The report said I had sacroiliitis (sacroiliac joint inflammation) and osteitis pubis (inflammation where the pubic bones meet)—two diseases I’d never heard of, but whose pain I knew well. When I googled their causes, Ankylosing Spondylitis was all over the search results.

I was convinced now that my widespread inflammation was due to AS, but I remembered the HLA-B27 gene issue, so I did some research. I’m a black female, and I was surprised to learn that about half of African Americans with AS don’t even have the gene. This wasn’t new information—it was discovered in the 1970s— but apparently none of my previous providers knew this. They still associated AS with B27 so strongly that they wouldn’t confirm the diagnosis in my case, despite my numerous symptoms.

Armed with knowledge about AS and determined to have a thorough workup this time, I was fortunate to find a rheumatologist who really listened. He took my full history and ordered imaging studies of my entire spine, which showed active sacroiliitis and bone marrow edema (inflammation in the bone), two AS diagnostic criteria. He diagnosed me with AS when he got the test results and established a treatment plan. I was so relieved that I just sat in my car after the appointment and cried like a baby.

Today— Acceptance and renewal: I started taking a biologic right away, but it stopped working after less than a year. I switched to another for a time, and I’ve been on the third (and most effective) for two years now. Biologics have helped give me my life back. I also manage my disease with regular stretching, exercise, and massages, and I’ve found new leisure activities and hobbies to distract my mind and relieve stress. In addition, I’ve become an AS advocate and support group leader, which have been very gratifying and empowering. I’ve met wonderful people I likely wouldn’t have and been involved in exciting awareness projects. And although I still live with daily pain and fatigue and occasional major flares (including my first bout of iritis), I’ve accepted my new life and no longer feel hopeless about my situation. I’ve had another joint surgery and am scheduled for knee replacement this year, but I look at these operations as extreme treatment for the damage AS has caused. I’ve also forgiven the people who weren’t there for me on this journey and been able to appreciate the angels who have been there all along.

AS has been a curse and a gift in my life. It’s broken me physically over the years, but it’s also strengthened my resolve to live life to the fullest.

Today, I’m the best I’ve ever been.

One Response to “A.S. Face 2210: Roselyn Tolliver”

  1. Dear Roselyn,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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