My battle with fibromyalgia

The author, Elizabeth Dudak, with her husband Peter, and children, Leah and Matthew. (Photo courtesy Elizabeth Dudak)   Get the facts on fibromyalgia What is it? Fibromyalgia is a disorder that causes muscle pain and fatigue (feeling tired). People with fibromyalgia have “tender points” on the body. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs. These points hurt when pressure is put on them. People with fibromyalgia may also have other symptoms, such as trouble sleeping, morning stiffness, headaches, painful menstrual periods, tingling or numbness in hands and feet, problems with thinking and memory (sometimes called “fibro fog”). What causes it? The causes of fibromyalgia are unknown. There may be a number of factors involved. Fibromyalgia has been linked to stressful or traumatic events, such as car accidents, repetitive injuries, illness, certain diseases. Fibromyalgia can also occur on its own. Some scientists think that a gene or genes might be involved in fibromyalgia. The genes could make a person react strongly to things that other people would not find painful. CONTINUED ON PAGE 2

"Mom, take it easy. I’ll get it for you.”

These words spoken by my 13- year-old daughter, Leah, slipped down my spine like ice. I was dreading this moment since being diagnosed with fibromyalgia. I prayed every night that it would never happen. I pleaded with God, Jesus, the saints, and Our Blessed Mother to allow me to remain the person I was before — a healthy, active woman and self-proclaimed Supermom. But when Leah’s words hung in the air, I knew I had no choice. At that moment, fibromyalgia had racked my body with pain, fatigue, and guilt; I finally had to succumb to my daughter’s assistance.

Fibromyalgia can cause extreme pain throughout the body’s muscles, tendons, and ligaments as well as “tender points” that are painful when touched. Another common symptom is acute fatigue. This condition affects women more than men and can last years. To me, having fibromyalgia is like having a horrible flu that includes constant muscle pain and absolutely no energy. That was my diagnosis, and it has changed my life dramatically.

It started on my family’s vacation to Mackinaw Island. On one of our bicycle rides back to our rented condo, my knees started to ache. It was odd, but I laughed it off as getting old. I told my husband that my 28 years of playing volleyball had finally taken a toll on me. As the days progressed, the ache became unbearable. It was not the normal knee pain I knew as an athlete; it was a type of pain I’d never experienced before, and it seemed to reach deep into the bone. I bucked it up, as all ex-athletes do, and made the best of the trip.

When we returned, the pain in my knees continued. Fatigue also began, engulfing my entire being. Getting up in the morning was like trying to reach the top of a mountain. Every push to get myself out of bed took mental stamina, and I dragged my body through the rest of each day. My thighs felt heavy, and the pain took over other parts of me, including my elbows, spine, and hips. The pain in my knees worsened — one stab after another after another.

continued from page 1 Get the facts on fibromyalgia Who is affected? Fibromyalgia affects as many as 1 in 50 Americans. Most people with fibromyalgia are women. However, men and children also can have the disorder. Most people are diagnosed during middle age. People with certain other diseases may be more likely to have fibromyalgia. These diseases include: rheumatoid arthritis, lupus, and spinal arthritis. Women who have a family member with fibromyalgia may be more likely to have fibromyalgia themselves. How is it treated? Fibromyalgia can be hard to treat. It’s important to find a doctor who is familiar with the disorder and its treatment. A pain or rheumatology clinic can be a good place to get treatment. Pain medicines and antidepressants are often used in treatment. Is research is being done? Yes. Researchers are currently studying why people with fibromyalgia have increased sensitivity to pain; the role stress may play; medicines and behavioral treatments; and whether there is a gene or genes that make a person more likely to have fibromyalgia. - www.niams.nih.go

I started my visits to various doctors. My general practitioner tested me for a thyroid condition and Lyme disease. I went to a rheumatologist to be tested for rheumatoid arthritis. A neurologist tested me for multiple sclerosis. These were life-altering diseases! Each test result came back negative. While I should have been rejoicing, I instead became depressed and disappointed — I just wanted something tangible so that I could take a pill or something that would make it all disappear. I was consumed with pain and self-pity. To this day, I am not proud of my reactions; I know of women who spend weeks in bed from these life-threatening diseases. I was blessed with these results, yet all I carried was anger and self-pity. I was so wrapped up in trying to continue my role as Supermom that I did not even take note of my selfish disappointment.

Throughout all of this, I continued to pray. Every night I said prayers to God, to Jesus, to St. Jude, to my guardian angel, and to my patron saint, St. Elizabeth of Hungary. I would talk to Mary on my drive to work, asking her to bargain with God for me. Certainly she would understand that I could not be the mother God wanted me to be unless I fully had my health. If anyone understood the Supermom’s role, it was Mary, the greatest mother of all time.

The answers that I wanted did not come, and my frustration grew. Much like a child who gets angry at a parent when she does not get her way, I yelled and cried and screamed. At certain points, I did not attend church. I showed God. If God was not going to grant me my wish — and that is how I was now seeing Him, a genie — then, why should I worship in his house? I felt betrayed, alone and desperate.

During this time, I was masking my true feelings. I kept telling important people in my life that God put me on the journey for a reason. I convinced them that my faith was strong. I almost convinced myself, too, but the truth would be revealed in the loneliness of the night. It was then when the anger would pour out of me. My prayers were no longer those of faith, but of betrayal and admonishment.

For more information Fibromyalgia Association Created for Education and Self Help (FACES, Inc.) P. O. Box 528504 Chicago, IL 60652 773-936-4183 www.fibrocop.org/aboutfacesindex.htm Fibromyalgia Alliance of America, Inc. P.O. Box 21990 Columbus, OH 43221-0990 614-457-4222 National Fibromyalgia Association 2200 N. Glassell St., Suite A Orange, CA 92865 714-921-0150 www.fmaware.org (sponsors National Fibromyalgia Awareness Day, May 11 to 13) American Fibromyalgia Syndrome Association 6380 E. Tanque Verde Road Suite D, Tucson, AZ 85715 520-733-1570 www.afsafund.org

I did have the support of family and friends. My mom told me that she prayed for me at her Rosary Society meetings. My sister, Andrea, was there to listen to my tantrums and to assure me God was listening. My children, Leah and Matthew, told me it was OK that I missed a band concert here, an ice-cream social there. I had so many friends and family members who were there for me. My husband, Peter, was my rock. He not only took me to my appointments and listened to my fears; he also played the role of Mr. Mom when I could not. Most importantly, Peter was the one who started to turn this all around for me without even knowing.

After 10 months of pain and fatigue, and exhausting all the doctors and opinions I possibly could, I was laying in bed asking, “Why? Why me? Why now?” I was spouting those questions out loud into the darkness of my room, convinced that I was talking to empty air. As the anger built, I remembered something that Peter had told me I relay to my kids when things aren’t going their way: “No is an answer,” Peter had said, “and you have to have as much acceptance with that answer as you do with yes.” I do not know why that lesson hit me then and not before. Maybe I was finally starting to listen. That night I began to feel a bit of comfort and less anger.

About a week later, my doctor decided I needed a two-week medical leave. I needed to take a break from the constant physical and mental push it took to get through my day. Throughout all of this, I had still been working 30 hours a week and donning the Supermom’s cape as much as possible. I left the doctor’s office with a determination to spend my leave truly looking at my life and my priorities, and figuring out where God was calling me. I needed to listen to his answer instead of blocking it out and waiting for mine. I started to really think about my husband’s words. Though I do not think God was saying “no” to me, He was answering me in different ways.

During this time, I kept thinking about my calling as a mom. New definitions of motherhood evolved. I started to let go of the “super” part of mom. I always thought I was being a good mom if I got my kids to all their swim practices and dance recitals and attended every one of their extracurricular events. Now, as fibromyalgia took over more of my life, I physically had to slow down, and in the process other priorities took over. Slowly I began to realize that I was getting my answers.

Eureka moments started flooding into my brain like a dam had just broke. Trying to be Supermom was an attempt to be the best, but that meaning, in motherhood, constantly changes. I started to have moments in which I sat with my feet propped up and ice packs on my knees, laughing with my daughter about a crazy story her friend told her. Or making fried dough with powdered sugar on top of the stove for my ever sweet-toothed son because I could not get him to the ice cream social. I was still able to comfort and laugh with my children and to be a mom to them.

As I neared the end of my two-week medical leave, my daughter surprised me. If she and her brother cut back on things like camps, new clothes, and eating out, she asked, would I be able to quit my job? They enjoyed me being home with them just doing nothing. Then she revealed the hugest eureka moment for me. Since my illness, she said, I had become a better mom. She told me with the honesty only children can possess that since I’d been ill, I hadn’t been as crabby. Schedules, commitments, and participation in activities meant less to her than me just being there in the moment.

Leah and Matthew still have commitments that my husband or I have to get them to. I still have to push myself through the day. I still have to juggle all those balls that are tossed at moms and more than likely, because of my fibromyalgia, I will drop some. However, my life has changed so dramatically. I wasted so much of my time concentrating on the negativism of those changes instead of embracing the good. I am a changed person. Parenting has a different meaning.

I still hold some guilt for relying on my children to be my legs. I still cringe when I ask for simple favors because fibromyalgia has taken its toll on me. I can only pray and put faith in God, Mary, and their guardian angels that it makes my children stronger persons. I still pray for the physical life I once knew and will continue to pray for the return of my old physical self. Mostly, I will pray for God’s will to be done, whatever He deems that to be, and I will do so with renewed faith. CD

Betsy Dudak is a writer living in Warrenville, Illinois, with her husband Peter, and children, Leah and Matthew.

To comment on this story, please e-mail us at letters@catholicdigest.com or visit our Readers' Forum.