Fibromyalgia, a chronic pain disorder, affects more than 10 million Americans, but it is not a disorder that many people know a lot about. In an effort to raise awareness, we spoke to two women who deal with Fibromyalgia every day.

Brenda’s Story

Brenda Willcuts of Yankton lives a full life. She works as a classified sales rep at the Press & Dakotan. Brenda and her husband, Steve, have a daughter and son-in-law. Brenda is an active collector of all things Coca-Cola, and Brenda has fibromyalgia.

Brenda was officially diagnosed with fibromyalgia in 2009 after at least a year of doctor’s appointments.

“I would always tell the doctor that I hurt so bad it felt like my bones ache,” she said. “They would do blood tests and find nothing and say, ‘You just have arthritis’.”

Brenda’s doctor put her on arthritis medication which provided no relief for her symptoms.

“It wasn’t doing anything for me,” she said. “I never had, and still don’t have a day that I don’t hurt. Some days it’s so-so and some it’s really bad, but it’s always there.”

Chronic, widespread body pain is the primary symptom of fibromyalgia, but a variety of other symptoms are common in fibromyalgia patients. The National Fibromyalgia Association says symptoms include: moderate to severe fatigue, sleep disorders, problems with cognitive functioning, IBS, headaches and migraines, anxiety and depression and environmental sensitivities. Symptoms vary in intensity and frequency from person-to-person, and some people may have only one to two symptoms while others may have many.

Eventually, Brenda saw a specialist who diagnosed her with fibromyalgia and prescribed her Lyrica (one of only three medications approved by the U.S. Food and Drug Administration to treat Fibromyalgia). She was also prescribed Ambien, a sleep aid, to help her rest.

“The part that really gets to me is the trouble sleeping,” she said. “I am always tired. I couldn’t tell you when the last time I actually slept through the night.”

Brenda said she often wakes in the night from pain and has a hard time finding a comfortable position for sleeping.

Although she takes her prescribed sleeping medication she said she doesn’t feel it helps and has tried to taper off.

Brenda said she has found massage and occasional chiropractic care have helped alleviate her pain to some extent.

“I try to get a massage at least once a month,” she said. “I would love to do it every week or every other week, but it gets expensive.”

She has found making some modifications to her routine helps manage the pain.

“I can’t go on a long car ride,” she said. “There’s something about sitting in the car and the vibrations of the road that just kills me. I never really go anywhere. I used to be able to clean my whole house and go to the grocery store and do all the laundry in one day, now I’m lucky if I can get the laundry done.

I’ve found that if I sit on the couch after work I don’t want to get up and make supper or anything. I’m just done.”

Brenda said fortunately, her husband Steve, is extremely supportive.

“Steve will go to the store and do the shopping,” she said.

“Walking around the store just wears me out. He’ll even pick my mom up and take her to the store to get what she needs. When I go with them, I’m the one sitting at the bench waiting for them to get done.”

Steve also built a stand for their washer and dryer so Brenda doesn’t have to bend as much to do laundry.

“Just that one change helps so much,” she said. “Steve has gotten really good at gauging when I’m hurting and exhausted and just takes over fixing supper or doing a little housework.”

Brenda said, although she always has some level of pain, the winter months are the hardest on her.

“When it gets really cold, I really hurt,” she said. “I used to always go to all the football games and basketball games. I just can’t sit for long periods of time anymore. The last time I went to a football game I bundled up and sat with a blanket on me, but the next day I woke up and my whole body hurt. The doctor said it was because of the cold.”

Exercise is recommended for fibromyalgia patients, but Brenda said it is hard to find the right amount.

“I want to exercise to keep muscle tone and loosen my joints, but if I overdo it I pay for it the next day,” she said. “I like to swim. The pool really helps because there is no resistance in the water; I’m trying to go to the pool more often. Even if I only walk around in the water, it helps.”

Brenda also walks her dog every day on her lunch break.

“I try to walk further and further every day, which is easy when the weather warms up and not so easy when it’s cold,” she said. “Sometimes it’s just really hard to exercise as much as I should. When I’m tired from not sleeping and hurting, the last thing I want to do is exercise.”

Brenda also has problems with her spine and sciatica, she wears a sciatica belt almost every day and uses a TENS therapy unit occasionally. TENS or Transcutaneous electrical nerve stimulation is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes.

There is no known cure for fibromyalgia, and symptom management under a doctor’s care is the only treatment available. The success of such treatments varies from patient to patient and it often takes trial and error to find what helps each patient. Brenda hopes researchers focus on finding the cause and hopefully a cure for fibromyalgia.

“I hope doctors continue to research the cause and find a cure for fibromyalgia. I think of the future and wonder what kind of shape I will be in physically as I get older,” she said. “I wish I could do some of the things I used to do, but I am thankful for the support of my family and friends.”

Heather’s Story

Heather DeWit of Sioux Falls is a happy mom of two girls, ages 7 and 10, with a caring and supportive loving husband of 12 years. She holds a degree in elementary education and has worked for Lutheran Social Services for 17 years (more than half her life.)

“We are a fun loving and relaxed family that enjoys time together doing a variety of activities indoors and out,” Heather said. “My position as the Director of Childcare and Education Services is both rewarding and challenging as I oversee six locations and well over 50 staff that makes a difference in the lives of children and youth in the Sioux Falls area. Both my family life and my career surpass even my wildest dreams.”

Heather never dreamt fibromyalgia would be a part of her life as well.

“I have had some of the symptoms of fibromyalgia for most of my adult life and even remember some of the neck and head pain as a child or adolescent,” she said. “After our youngest daughter was born in 2007, the symptoms were even more pronounced and I talked with my doctor.”

Fortunately, Heather had a very supportive physician who listened to her and, through the process of elimination, they worked together to find what was wrong.

“My doctor is fantastic. She listens carefully in all situations and, when it came to my pain and exhaustion, she did blood work and asked more about my symptoms,” she said. “She decided it would be best for me to see a rheumatologist to rule out any other potential issues and confirm a fibromyalgia diagnosis.”

Heather said she also had a positive experience with her rheumatologist.

“She did a variety of tests and scans to determine that fibromyalgia is what I am experiencing,” Heather said. “She provided some guidance, and my primary physician has been able to meet my medical needs since that time.”

Heather says she has been blessed so far in that she has been able to treat her symptoms without relying heavily on medications.

“I take some medication, but have been able to avoid pain medicines for the most part, with the exception of occasional ibuprofen on really bad days,” she said. “I have had success with both chiropractic care and massage. On a day-to-day basis, my heating pads have been the most helpful tools, particularly one that is shaped sort of like a cape and provides relief to my neck and shoulders. There are days that an ice pack at the base of my head works really well too.”

Heather said, because fibromyalgia is so different for each patient, there are no hard and fast remedies to alleviate pain.

“Not everyone experiences fibromyalgia in the same way, and not everyone gets relief in the same way. Sometimes people give advice about how to feel better, like diet or certain medications, that worked for a friend. I always remember that everyone means well and just wants to help me, but I would encourage people to remember that most people with fibromyalgia are working with a doctor - or a few doctors - and let the experts give advice,” she said.

She does note that she doesn’t want people to be afraid she will break when they learn she has fibromyalgia.

“Sometimes people are afraid to touch me because of fibromyalgia,” she said. “Please don’t be scared! A hearty backslap may not be my favorite, but I still appreciate a gentle hug or touch on the shoulder. To be honest, the human touch is worth it even if it hurts.”

There is one recommendation Heather would make to anyone struggling with fibromyalgia - seek support.

“I am so thankful that I have a supportive and loving husband, parents, siblings and family. I have caring and thoughtful friends and an incredible church family,” she said. “If a person doesn’t have a support system, I recommend finding a support system like a church or support group.”

Heather has found that positive thinking goes a long way for her.

“Fibromyalgia is a very physically real disease, but sometimes for me it helps to think my way through it,” she said. “For example, when I’m going for a walk with my girls and they want to go further, I could stop because it hurts and I’m tired but I often choose to keep walking or playing because I can remind myself that my body may be feeling pain but it isn’t hurting me to keep walking.”

Heather is optimistic and chooses to look at life’s silver linings.

“I never want someone to feel sorry for me because of my fibromyalgia. One of the best things that fibromyalgia has done for me is helping me to grow in my faith,” she said. “I am strong-willed and independent but having fibromyalgia has forced me to lean on my God who is bigger than my circumstances. In my weakness, I see God’s strength more easily.

“Also, having fibro has really made my priorities crystal clear. When sometimes I am in too much pain or too exhausted to do everything I want to do, I am able to choose what I need to do more effectively. I do what is most important first so that, if I wear out or have a really bad fibromyalgia day. I don’t miss out on what matters. That is a gift.”

Heather is the oldest daughter of Yankton residents Micki and Marty Schievelbein.

For more information about fibromyalgia, visit www.fmaware.org.