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Finding a Way Through the Pain: There Are Help Groups for People Suffering From Chronic Illnesses.

July 26, 2008

By Shawn Burnette, Daily Press, Newport News, Va.

Jul. 26–Judy McClary, leader and founder of the Tidewater Chronic Pain & Chronic Illness Support Group in Chesapeake, holds monthly meetings at her house for those suffering from chronic pain or chronic illnesses. It is a place where people can come together and give each other support and encouragement. McClary, a registered nurse and certified legal nurse consultant, works with and has chronic fatigue syndrome. She’s trying to raise awareness and help people understand this misunderstood disease.

Chronic fatigue syndrome is a debilitating condition in which the host suffers from incapacitating fatigue and poor stamina. Other symptoms include problems with short-term memory, flu-like symptoms, pain in joints and muscles, non-rejuvenating sleep and tender lymph nodes.

“This fatigue beats all fatigue,” McClary said. “It’s like a truck is sitting on top of you and you can’t get up. It’s an inner struggle between your mind and body. Your brain says to go mow the grass or clean the dishes, and your body refuses to get up.”

Like other people who have the syndrome, McClary suffered through years of pain. Luckily, she had the support of her husband and other loved ones to help her through the years.

Some patients aren’t as lucky. DeAnna Trail, a physician and leader of the Williamsburg Fibromyalgia Support Group, lost the support of family and friends after she was diagnosed. Where chronic fatigue syndrome causes exhaustion, fibromyalgia, a related illness, causes severe muscle and nerve pain throughout the body. Trail eventually regained the support from her family and is alive today because of it.

Though chronic fatigue syndrome is not fatal, more than 40 percent of the people diagnosed become disabled. “Once you have it, you can never go back to the way you were before,” McClary said.

Due to the lack of sleep caused by chronic fatigue syndrome/fibromyalgia, the brain fails to produce the human growth hormone used to repair any muscle tissue that was damaged throughout the day. Because of this observation, doctors have told their fibromyalgia patients that good sleep is a must in order to cope with this illness. Some doctors have started to prescribe Ambien and Lunesta to help their patients achieve restorative sleep.

The illnesses can lead to other problems. When she contracted fibromyalgia in 1981 and then chronic fatigue syndrome in 1993, McClary was prescribed anti-depressants which caused her to develop dry mouth. Due to the lack of saliva, bacteria slowly started to decay all of her teeth. Eventually all of her teeth were removed.

When she went back to the dentist to get dentures, a material known as hydro-cast was used to help create her dentures. She soon found out that she had an allergic reaction to this powder, which led to her being bedridden. Her prolonged stays in bed left her malnourished. McClary lost a significant amount of weight and was rushed to the hospital. Her husband, Bill, was faced with the difficult decision of either letting his wife die or agreeing to the installation of a feeding tube.

After the tube was removed and McClary was allowed to leave the hospital, she was unable to walk or write. It took nine months of rehabilitation before she was able to walk without support and write legibly.

McClary’s social life deteriorated as well. She quickly discovered the difference between true friends and occasional friends.

“The occasional friends would ask you how you were, and while I would be talking to them, I would notice their eyes focusing on to other things, almost as if they pretended to care,” said McClary, “Nowadays, I ask people, ‘do you really want to know how I am doing?’ “

Some people who are diagnosed are hurt more by the way the illness affects those around them. Seventy-five percent of McClary’s married patients end up divorced or separated due to the misunderstanding of this illness. Some patients complain that their own families will not believe them, and the situation tears a rift between them.

This illness affects the economy as well as the population.

“Each year, it costs our economy as much as $25 billion in medical costs and low productivity,” said McClary. A Centers for Disease Control and Prevention study concluded that some chronic fatigue syndrome patients became as disabled as those with multiple sclerosis, people undergoing chemotherapy, and people battling the later stages of AIDS.

Trail has studied fibromyalgia extensively, not only to help the people who have it but also to learn how to treat her own case.

This illness, as debilitating as chronic fatigue syndrome, affects the body, causing a state of chronic pain all over the body and moderate to severe fatigue. Some of the other defining symptoms include a heightened and painful response to gentle touch, nerve pain and chronic sleep disturbances.

Trail was often misunderstood by family, friends and co-workers. She went from a multi-tasking mother and doctor to someone who needed to be cared for. Shortly after being diagnosed, she lost her job, hobbies and health due to the exhaustion and pain. Her own family doubted her condition and gave her a “tough love” approach. Although she did have help from a few friends and doctors, the lack of understanding and support as well as the chronic debilitating pain drove Trail to attempt suicide.

“This is not unheard of in CFS/FM patients,” said Trail. “They may have no one who understands their pain and fatigue and when combined with the loss of the quality of their life, people with chronic debilitating disease may become totally hopeless and sometimes turn to suicide.”

Sufferers of chronic fatigue syndrome and fibromyalgia are forced to find out who really cares about them and who is an occasional friend. With the support from their loved ones, McClary and Trail are alive and coping effectively today.

News to Use For information about the Tidewater Chronic Pain & Chronic Illness Support Group, contact Judy McClary at 436-2326. For information about the Williamsburg Fibromyalgia Support Group, contact DeAnna Trail at 879-4725. Information on treatment options and finding physicians and support groups for these conditions is available at fmaware.org and endfatigue.com.

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