Mary Jane Howard was well into her fourth decade when she noticed her first symptoms. She was experiencing unusual fatigue and abnormal pain in different parts of her body.
"It was about 18 years ago -- I was in my late thirties. I was tired, and some days I couldn't move," Howard said.
She said while she generally was quite flexible and could easily bend over and touch her toes, some days it wasn't possible.
"There were times when I could not get my hands past my knees," she said. Although Howard was able to work, her life was becoming more difficult. She was caring for her 5-year-old, and she was also working full time as a librarian.
Finally she went to her physician who after listening to her symptoms, knew exactly what was wrong. She had fibromyalgia.
According to the National Fibromyalgia Association, fibromyalgia is a complex chronic pain disorder that affects an estimated 10 million Americans or approximately 3 to possibly 6 percent of the population worldwide. While it occurs most often in women, it also strikes men and children and all ethnic backgrounds.
According to the Fibromyalgia Network, those dealing with the disease describe the pain as muscular aching, throbbing, shooting and stabbing in the muscles, ligaments and tendons. Some people experience a burning sensation. However, there are numerous other symptoms. Many experience moderate to severe fatigue, sleep disorders, problems with cognitive functioning, IBS, headaches, anxiety, depression and environmental sensitivities. Howard was fortunate that her doctor recognized her symptoms.
"I think for a long time, medical people didn't understand it," she said.
For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.
"It didn't stop me from working, but it made me aware of getting enough sleep, and trying to not get stressed," she said.
Howard uses such strategies as getting plenty of rest, taking vitamins, massage therapy, and working out at the YMCA.
"I eat organic as much as possible, I don't do artificial sugars, yeast and grains," she said. She also does mild exercise.
"I do an abbreviated form of yoga, I walk a lot -- sometimes I can't," she said.
"You try to keep things stable so you can function the best you can," Howard said. She said it helps to talk with family and friends about the disease so they understand when you are having a bad day.
According to the National Fibromyalgia Association, fibromyalgia can occur for different reasons. Genetics is a possibility because it is often seen in families. However, Howard said she is the oldest of six children, and is the only one of her family who has this disease. It sometimes occurs following a physical trauma, which might trigger the disease. Howard said she did have a back injury several years ago. In addition, according to the NFA, the ability to process pain appears differently in people with fibromyalgia. They very often have a very low threshold for pain.
There is no known cure for fibromyalgia, but it is not life threatening nor does it progress. Treatment includes a variety of medications for relieving symptoms and improving function.
According to the National Fibromyalgia Association, the first drug approved by the FDA to treat fibromyalgia is called Lyrica. It came out in 2007. The NFA said massage, acupuncture, chiropractic, herbal supplements, and improved nutrition can be effective in managing the symptoms. In addition, increasing rest, pacing activities, reducing stress, and practicing relaxation can help minimize symptoms according to the NFA handout. Howard said while massage therapy helps her, some people are in so much pain, they cannot stand to be touched. She sometimes tries options offered, and adopts those that have worked best for her.
"I go to a pain clinic, and I work out at the Y," she said.
In recognition and in conjunction with National Fibromyalgia Awareness Day on May 12, Family Care of Teays Valley is holding a meeting on that Monday at 5:30 p.m. to bring together those who would be interested in starting a fibromyalgia support group and to define what they feel are the needs in this area, according to Michelle Kosa, social worker at Family Care of Teays Valley.
Kosa said Family Care of Teays Valley has been a community health center and participated with disease management for five years for Cardiac, Diabetes, and Asthma. They have ongoing classes in nutrition and exercise and are now expanding to include fibromyalgia.
"We want to see if there is a need for a support group. Huntington has the closest," she said.
Kosa said a representative from Fizer is supposed to attend. They have also invited a massage therapist who can discuss that treatment option with those attending. There will also be door prizes and refreshments.
Howard and Kosa urge anyone with this disease to come out and share their knowledge with others. Howard said fibromyalgia can be quite isolating.
"Family members and friends of those affected by this condition face as many challenges in some ways as the patients themselves. This condition has a broad spectrum of symptoms and solutions which make it particularly challenging to find what works for each person," Howard said.
She said people have to discover what works for them.
"I have had to find my own way to living a productive and satisfying life. There is no substitute for person-to-person encouragement. We hope this will be a great opportunity for people to make connections with each other," she said.
Family Care and Howard do not endorse any particular healthcare treatment.
In addition, they stress that whatever is said in a meeting, remains confidential.
If you are interested in this meeting or for gaining more information, call Michelle Kosa at Family Care. The number is (304) 757-6999, Ext. 23. There is no registration. Family Care is located at 301-6 Great Teays Blvd., Scott Depot, W.Va., between Kroger and Schlotsky's.
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