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Posted January 20, 2009 | comments 3 Comments

Hard to diagnose condition can be exhausting, isolating

Teresa Emerick and Connie Dailey
Teresa Emerick and Connie Dailey have fibromyalgia and take daily walks to combat the pain. Dennis Grundman/Daily

Dailey steps out of her home in Stephens City for her daily walk. Dennis Grundman/Daily

By Josette Keelor -- Daily Staff Writer

Connie Dailey, of Stephens City, was diagnosed with fibromyalgia in 1994, a little more than two years after she was in a car accident that left her in severe pain.

Dailey, 62, noticed the extent of the damage from the very first night after she returned home to go to sleep.

"When I woke, I couldn't move, I was paralyzed," she says of that night.

She prayed for assistance and returned to sleep. When she woke in the morning, she was feeling better, but the pain has never really left her. For two years she sought a diagnosis from doctors who were unable to name her condition. She was told that she possibly had a small strain from the accident and to see a psychiatrist because the pain might even be all in her imagination. They thought she was just depressed, she says.

"It took almost two years, because I went from doctor to doctor," she says.

Finally she decided to see Dr. Mary Hagerty, a rheumatologist with Arthritis Specialists of Winchester.

"I was in her office for about five minutes, and she diagnosed me," Dailey says.

A large problem with treating fibromyalgia, a disease that presents itself in many different ways, is that no test exists to identify the condition. The trigger point test is the best option, Dailey says.

Trigger points and tender points are tender areas on a muscle and often feel somewhat hardened if the muscle is touched, according to the National Fibromyalgia Research Association's Web site, www.nfra.net. Tender points hurt when pushed, the site says, but trigger points both hurt and cause pain in other parts of the body not being touched.

The Fibromyalgia Network's Web site, www.fmnetnews.com, offers a chart with 18 trigger points of pain on the body. If a patient exhibits 11 symptoms on the chart, he or she is determined to have fibromyalgia, the site says.

"I have 15, I think," Dailey says. She also lists irritable bowel syndrome, temporomandibular joint dysfunction, sleep problems and migraines as some of her symptoms.

Fibromyalgia is often compared to chronic fatigue syndrome, because sufferers are tired all the time from poor nighttime sleep.

"I don't get to the REM sleep, the deep sleep," Dailey says.

Experts believe fibromyalgia and chronic fatigue syndrome may actually be the same condition, according to www.fmnetnews.com. Gulf War syndrome also overlaps with the other two, the site says.

All three conditions are difficult to diagnose because the symptoms do not present themselves obviously.

Dailey says she felt isolated with the illness, having to stay at home a lot and not able to have others understand her pain.

"You would think I was 100 percent healthy," she says. From the outside she looked normal; on the inside she was in agony.

"I couldn't remember things," Dailey says, explaining that what she and others with fibromyalgia call "fibrofog" affected her ability to balance her checkbook or count money.

"Our skin actually hurts," she says of those with her condition. "All the way around it's pretty debilitating."

"Sensitivity to pain is more pronounced in people with fibromyalgia," Hagerty says. The pain can affect every aspect of their lives."

Eventually all the symptoms began to wear on Dailey, affecting her job.

"I had to quit work, which I hated because I loved my job and I liked working," Dailey says.

A self-described type-A personality, Dailey had trouble admitting she could not do everything she used to be able to.

"I don't think you should just give up," Dailey says, adding that those suffering from fibromyalgia should stay active with the approval of a doctor.

Dailey began following a workout plan with the hope that it would help her deal with her illness. Soon, though, she was pushing herself too hard, spending an hour or more in the gym when her doctor recommended much less.

"When working out, I go all-out -- I'm still a Type-A," Dailey says. "When I go at stuff, I want to go at 100 percent."

She has since scaled back on her workouts, choosing walking in her neighborhood as her primary form of exercise.

"Sometimes I think it helps and other times I'm not sure," she says, explaining that sometimes she will even feel worse after exercising. "It's whatever the illness decides to do with my body."

"Treatment should always include a better night's sleep and a gentle exercise program ... and if these things are [achieved] people with fibromyalgia will usually improve over time," Hagerty says.

Also as part of her self-treatment, Dailey founded a support group in Winchester. In 1994, she placed an advertisement in the newspaper to judge the community's interest in the disorder; the first night the ad ran she received more than 50 phone calls, she says.

She holds meetings of the Fibromyalgia/Chronic Fatigue Syndrome/Gulf War Syndrome Support Group each month at the Winchester Rehabilitation Center in Winchester.

Besides matching her up with other people who know what she's going through, the group helped her express her feelings as well as understand more about the illness. Over the years, comparing her symptoms with those of other group members has helped all of them to better understand themselves.

At one point, the husband of one group member had noticed that everyone in the group affected by fibromyalgia was a type-A personality, something that Dailey had not realized before.

In her attempts to self-treat her illness, Dailey has tried alternatives like Reiki, kinesiology and acupuncture as well as vitamin supplementation. She has not noticed an improvement, but, she says, she keeps taking vitamins at Hagerty's recommendation.

"I'm so desperate for a cure, a treatment, something so I can get up in the morning and feel like most people," Dailey says.

Hagerty says no one knows what causes fibromyalgia, and there is no cure, but medications can help ease symptoms in some people.

Dailey takes glucosamine and chondroitin, joint supplements to help ease pain in her knees.

"For my knees it really works," she says, though she adds that she isn't sure if it works only because she believes it will.

Hagerty lists Cymbalta, Lyrica and Gabapentin as some medications useful to those suffering from fibromyalgia.

The Fibromyalgia/Chronic Fatigue Syndrome/Gulf War Syndrome Support Group meets on the third Wednesday of each month from 5-6:30 p.m. at the Winchester Rehabilitation Center at 333 West Cork St. in Winchester. For more information, call Connie Dailey at 869-7150.

Contact Josette Keelor at jkeelor@nvdaily.com

Getting Diagnosed

In order to be diagnosed with fibromyalgia, patients must exhibit 11 of the 18 tender point sites on the body, according to The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Pain must be widespread, in both sides of the body and above and below the waist. Axial skeletal pain (cervical spine, anterior chest, thoracic spine or low back pain) must be present.

Some common symptoms:

  • Pain
  • Fatigue
  • Sleep disorders, such as sleep apnea, bruxism or teeth grinding, periodic limb movement during sleep and restless legs syndrome
  • Irritable bowel syndrome
  • Chronic headaches
  • Temporomandibular joint dysfunction syndrome

Other common syndromes: premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness and impaired coordination

Those diagnosed with fibromyalgia suffer from many different conditions, though some have conditions other patients do not have. The National Fibromyalgia Research Association offers information on how many patients suffer from each condition:

  • Muscular pain -- 100 percent
  • Fatigue -- 96 percent
  • Insomnia -- 86 percent
  • Joint pains -- 72 percent
  • Headaches -- 60 percent
  • Restless legs -- 56 percent
  • Numbness, tingling -- 52 percent
  • Impaired memory -- 46 percent
  • Leg cramps -- 42 percent
  • Impaired concentration -- 41 percent
  • Nervousness -- 32 percent
  • Depression -- 20 percent

--Sources: www.fnfra.net, www.fmnetnews.com

3 Comments | Leave a comment

    When it comes to Fibromyalgia and CFS/ME, the story remains the same: You don't look sick.

    It's so hard to get sympathy, empathy, and understanding from people when they truly don't believe you can possibly be as sick as you say you are.

    Sometimes I feel it's solely a judge on my character, and I don't pass their judgment. I try to avoid people like that, which includes almost everybody!

    I'm so glad to see stories in print and hope that the readers of those stories will come to understand in a better way we who suffer with these diseases/this disease...

    I was diagnosed with fibromyalgia in 1999 and know all too well the effects this disease can have on you. I was also type A personality and was a stay on the go woman, but this disease literally stopped me in my tracks. I have some other health conditions with my joints and spine that have required me to have many surgeries and having the fibromyalgia has made the recover process much more difficult. I've had to quit work and am unable to drive myself now. Most of my family and friends do not understand how much you are isolated with the disease and how the easiest of tasks are very difficult and painful. Most of my days are spent in bed...But to look at me you would think I am healthy. I just wish more people would try to understand and the medical community would find more options for us that are living with this disability each and every day. I relate to the article in so many ways as I know others like us do as well. It is not in our heads and we really would like to return to our old selves and our old lives. But most of all I wish that those that know any of us that are dealing with fibromyalgia just show some support and compassion...it isn't easy to live with this painful condition.

    I am so glad to see the paper taking an interest in this. I have had fibromyalgia since 1985 after an injury at a factory. My Dr told me what I had but then Workman's Comp wanted there Dr to look at me - he said there was nothing wrong and it was all in my head, at that they stopped paying my Dr bills etc.. After many years of thinking I was just crazy I was again told this is what I have. Maybe this story will help others understand the effects and how it is not in our head.

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