Susan Barr
Kern Valley Sun

Profound, chronic, widespread pain. Not something most of us would wish on our worst enemy, yet that is what the average fibromyalgia sufferer has to look forward to long term.

Fibromyalgia, a surprisingly common and complex chronic pain disorder, affects an estimated seven to 10 million Americans. It affects women much more than men in an approximate ratio of 20 to one and is seen in all age groups from young children through old age. Most sufferers begin experiencing symptoms in their 20s or 30s. Fibromyalgia affects sufferers physically, mentally and emotionally, and is unique in that it is a syndrome rather than a disease. The difference being unlike a disease, which has a specific cause and recognizable symptoms, fibromyalgia is recognizable by a series of signs, symptoms, and medical problems that generally coexist, but are not clearly related to an easily identifiable cause.

Glenda Smith of Mt. Mesa suffers from fibromyalgia.

Glenda Smith, of Mt. Mesa, was diagnosed with fibromyalgia in 1989 at the age of 42. Since then she has had to contend with excruciating pain on a nearly daily basis.

“It usually begins with an aching in my collarbones that feels like someone has taken an axe to them,” Smith said. “My shin bones eventually feel the same way. And my arms feel like a thousand rubber bands are being snapped on my skin, one at a time.” Smith estimates that the number of days she has been totally pain free since being diagnosed can be counted on two hands.

Fibromyalgia, also referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is most often characterized by chronic widespread pain, multiple tender points, sensitivity to touch, light and sound, abnormal pain processing, sleep disturbances, fatigue and not surprisingly psychological distress. For those with severe symptoms, the syndrome is often debilitating and interferes with even the most basic daily activities. Many fibromyalgia sufferers also experience a number of other symptoms and overlapping conditions, such as irritable bowel syndrome, lupus and arthritis.

Smith clarified that while the unrelenting pain is terrible, the reaction of others is often worse. “People don’t understand. They think because they can’t see your pain, it isn’t real. It’s an invisible condition.” Smith expressed how she doesn’t think she could continue without the love and support of Dick, her husband of eight years. Smith said of his wife’s condition, “One of the worst parts for someone suffering from fibro has to be that it hurts for them to even be touched. That’s hard on their spouse. But you just have to be understanding.”

After her diagnosis more than 20 years ago, Smith was immediately put on steroids which unfortunately had serious long-term health effects. “Steroids were one of those things that they experimented with. All I did was gain weight, so I quit taking them about eight years ago. I finally said “No more.” But the damage was already done to Smith’s body. Her metabolism was irrevocably affected, causing her to gain nearly 200 pounds and to suffer from a host of other related health conditions.

While there is no known cure for fibromyalgia, suffers can find some relief through various pain medications, many of them available by prescription only. Lifestyle changes such as proper nutrition, moderate exercise, restorative sleep, and complementary therapies such as acupuncture and massage can also help to alleviate pain to a certain degree.

It should come as no surprise that an estimated 20 percent of fibromyalgia sufferers also experience depression or anxiety. Whether or not this played a part in last week’s tragic deaths of a Weldon mother and daughter, both sufferers of fibromyalgia, may never be known. Regardless it hit a little too close to home for Smith who explained, “I was devastated when I read about it in the newspaper because I knew exactly how they felt. I’ve been to the point where I was would like to take a gun to my head and end it, but I don’t.” She continued, “I think probably my love of Jesus is the only thing that keeps me going.”

Smith knows of several other fibromyalgia sufferers in the valley and would like to see a support group started. According to the Fibromyalgia Association of America website, the closest such group meets in Victorville a distance that would be out of the question for those afflicted with the painful condition.

Smith would like other interested individuals to contact her at gcsrhs9@hotmail.com and include “support group” in the subject line.

For more information on fibromyalgia, visit the FMA at www.fmaware.org or the American Association for Chronic Pain at www.theacpa.org.