CARTHAGE A local woman hopes to offer support for a greatly misunderstood disease. Christina OConnor was diagnosed with fibromyalgia nearly a year ago and has been traveling to Potsdam to attend a support group.
She sought medical attention when she experienced pain all over, had headaches and couldnt muster up the energy to do what I used to do.
After a preliminary diagnosis by a Carthage-area doctor, it was confirmed by a rheumatologist in Utica.
It affected every aspect of my life, Mrs. OConnor said. For example, prior to the onset of the disease, she would ride a snowmobile; now it hurts too much to do so. The disease also has affected her job and caring for her home and her children. She has had to cut her hours at Sundance Leisure, Watertown, where she is a service consultant.
Migraines inhibit everything, she said. In addition, as with many who have fibromyalgia, she has trouble sleeping.
Fibromyalgia is defined as a widespread pain in the muscles which causes many other symptoms including brain fog or difficulty thinking or finding the right words. Other indicators of the disease are tender points throughout the body, balance problems, itchy or burning skin and digestive disorders. Many describe their symptoms as flu-like.
Not only is the disease difficult to diagnose due to the variety of symptoms and lack of specific medical testing, but researchers do not the know the cause. According to WebMD, the disease has been linked to hormonal and chemical imbalances which affect nerve signaling, deep muscle pain caused by stress, illness or trauma, heredity or a combination of physical and emotional stressors.
Since the Potsdam support group helped her realize more about the disease, Mrs. OConnor felt it would be nice to have a group closer to home.
It made me realize Im not alone and Im not crazy, Mrs. OConnor said. Others have the same thing. I learned quite a bit and it helped tremendously.
According to the group organizer, there is not a support group between Potsdam and Syracuse. There is one in Baldwinsville, she said, but it meets during the day, making it impossible for working people to attend.
She said she decided to start the group to help others and make them understand they are not alone.
The Northern New York Fibromyalgia Support Group for those in Jefferson, Lewis and St. Lawrence counties is scheduled to start at 6 p.m. Jan. 8 in the conference room near the cafeteria at Carthage Area Hospital, 1001 West St. Participants are welcome to share their story or to just listen to others.