First lady Kathye D. Jenkins of Abundant Grace Bible Church is a busy woman: a wife of 41 years, a mother of five adult children, and a grandmother of 15.
Through her nonprofit, the Cynthia Perry Ray Foundation, and as founder and CEO, she champions education, encouragement and empowerment for a healthier community. Behind her smile, graciousness, and a “don’t take no for an answer” persuasiveness, Jenkins also struggles daily with an incurable, medically unexplained chronic pain syndrome — fibromyalgia.
More than 12 million Americans are dealing with fibromyalgia. The misunderstood condition commonly occurs in women between the age of 20 and 55, but can happen during childhood years, also. The syndrome affects one in 30 women and one in 200 men. The risk of developing fibromyalgia can increase with age.
While it is a widespread life-altering condition in the United States, it’s not uncommon for it to take years to get a diagnosis because fibromyalgia is often misdiagnosed. The cause for the condition is not certain. Medical professionals attribute it to genetics, infections, illnesses, physical or emotional trauma or an incident such as a car accident.
“When I was 3 years old, I was injured in a car accident and had a lot of pain,” Jenkins said. “The doctors told my mother that it was growing pains.”
When Jenkins turned 8, the pain persisted, but nothing was done.
“My mom was advised to give me baby aspirin and make me go to bed early,” she said. “I was a kid and wanted to play, not go to bed.” She learned to live with the pain.
“I had a partial hysterectomy in my late 20s and the pain intensified,” Jenkins said. “My pain was at a constant seven on a scale from one to 10, and I was always tired.”
Typical fibromyalgia symptoms are brain fog, depression, fatigue, health-related anxiety, irritable bowel symptoms, morning stiffness, muscle and joint soreness, pain and tenderness in the joints and sleep problems.
“More often than not, I would wake up feeling more exhausted than when I went to bed the night before,” Jenkins said.
Ten year later, Jenkins was diagnosed with ovarian cancer and underwent surgery for the removal of her ovaries.
“I was in so much pain that getting out of bed was very difficult,” she said. “The doctor gave me a full body MRI.”
Jenkins was diagnosed with fibromyalgia.
“I thought I had dementia because I couldn’t remember things,” Jenkins said. “The constant pain messed with my mind.”
Brain fog, which is difficulty concentrating, and occasional memory loss is one of the symptoms of fibromyalgia.
“The biggest challenge of suffering from an invisible chronic pain condition is educating and convincing people that the pain really exists, including health care providers, employers, co-workers, and even family members,” Jenkins said. “My husband understood when I was forced into early retirement as a fire and casualty insurance agent, a job I loved, but the pain was unbearable.”
Jenkins said her children often times expected her to always feel up to joining them on an outing or participate in different activities.
“I have good and bad days,” she said. “I never know when [pain] flare ups will take over my body.”
The pain may range from 1 to 10 and beyond and feel like a deep ache, or a shooting, burning intense pain.
“I would hurt in places that you don’t think you could feel pain,” Jenkins said. “It’s hard to explain, but it feels like my body is being thrown against the wall. The pain radiates from everywhere in my body.”
The painful areas are called tender points, which are the soft tissue on the back of the neck, shoulders, chest, lower back, hips, shins, elbows and knees. The pain then spreads from those areas.
“To ease the pain, I have tried acupuncture, detox, massage therapy, herbs such as turmeric and ginger for inflammation,” Jenkins said. “Small doses of hormones seemed to help.”
As a preacher’s wife, she has not tried any marijuana products. However, she says she may step out on faith and try the medicinal herbs as prescribed by her physician.
The Mayo Clinic recommends self-care to manage fibromyalgia by taking proactive steps: reduce stress by allowing time to relax through mediation and deep-breathing exercises; get sufficient sleep; keep your body moving through exercises that have minimal impact on your body, like stretching, walking, water aerobics; pace yourself and don’t overdo any activity; and, finally, maintain a healthy lifestyle and do things that are enjoyable and fulfilling.
“I founded the Cynthia Perry Ray Foundation as an outreach program of the Gardena Valley and Vicinity Ministers’ Wives and Widows Sisterhood Connection,” Jenkins said. “I enjoy working with the clergy wives on our health and wellness program, Witness 2 Fitness, to share information about health and wellness, depression, addiction, mental health issues and caregiving.
Through serving God and her community, Jenkins found the key to managing the pain and living well with fibromyalgia.
“If you have fibromyalgia, there is hope for a better tomorrow,” she said. “I look at the total picture and not my disabilities. I focus on my abilities and it enables me to live a fulfilling life on my own terms.”
National Fibromyalgia Association – www.fmaware.org
American Chronic Pain Association – www.theacpa.org
Centers for Disease Control and Prevention – www.cdc.gov
Mayo Clinic – www.mayoclinic.org
Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to firstname.lastname@example.org and look for her column in The Wave.