Living with Chronic Fatigue Syndrome
One Patient's Story
By Angela Generoso
At 21 years of age, Sarah Jones* felt like she was falling apart.Once an energetic cheerleader and member of a professional dance team, full of energy and life, Jones gradually found herself bedridden and unable to work. As time went on she became more confused as to why she was feeling constantly tired. Then one day a friend of hers, who was a nurse, asked if she had ever heard of chronic fatigue syndrome. "My doctor back then didn't believe in chronic fatigue syndrome," Jones says. "It was still up in the air; people didn't believe it existed. I think it's better now, but back then it wasn't." Jones found herself undergoing a series of tests, and when they were finished, she was diagnosed with chronic fatigue syndrome, a disease which inhibits people from performing everyday activities due to severe tiredness. Although the cause of chronic fatigue syndrome is still unknown, doctors can diagnose it by ruling out other possible causes of fatigue. "There was a sense of relief because finally there was a reason for all I was experiencing," Jones says. "People would constantly ask what was wrong with me, and I felt like I was going crazy. I never guessed it could be one particular illness that could be causing it all." Jones started on a long journey of medical tests in an effort to get better. She went through years of disappointment, having MRIs taken, going through blood tests and a thyroid test, and was put on a series of different medications and herbs. She put time, money and effort into seeing naturalists, visited mainstream doctors, and went through a series of allergy injections in an effort to find an answer. For about three years she was on a strict allergy diet where she had to exclude milk, sugar, corn and wheat from her diet, and also had to remove all dust particles from her house.
"My diet just became more and more limited," Jones says. "I was basically eating meat and salad, wheat free pasta and wheat-free, milk free cookies. My diet was very, very plain."
Although she followed her diet strictly, she still felt tired. Then in 1998, five years after her initial diagnosis with chronic fatigue syndrome, the dizziness started.
"I have constant dizziness," Jones says. "When I look at things, everything is always moving."
Jones sometimes has dizzy spells that are worse than others where she feels off balance and has to grab onto something. Her symptoms are sporadic in that she often can go a few days without feeling severely dizzy, but then experiences several dizzy spells in a short amount of time.
"With chronic fatigue syndrome symptoms come and go," Jones says. "I also have muscle aches, headaches, sore throats and TMJ to name a few," she said. "I sleep with a night guard to help prevent my jaw from locking while I sleep, although it still happens from time to time. My teeth will ache and I even went a whole year unable to chew on one side of my mouth."
Another symptom of chronic fatigue syndrome that plagues Jones is sleep disturbance. She often wakes up during the night for no reason on an average of 15 to 20 times and can remain awake for hours at a time. She underwent a sleep study to find out the cause, but was unable to come up with an answer. It still takes her at least an hour to fall asleep at night.
Jones also experiences problems with her joints and has elbow pain as well as pain in her thumb joints and knee joints. Her list of symptoms goes on to include temporary memory loss , depression, anxiety, irritability, acne, PMS, and lightheadedness. Yet, above all, her strongest and most constant symptoms are her fatigue and dizziness.
"The fatigue I experience isn't just 'being tired,' she explains. "Every fiber of my being feels sick from fatigue."
Since Jones was too fatigued to work, she had to move back with her parents while going through the fight for social security and the wait for housing. It wasn't until 2000, at age 28, that she was able to finally live on her own for the first time since she was 21.
"That was a great feeling, to have my own place," Jones says.
Jones says one of the hardest parts of her condition was the amount of people who didn't believe she was actually sick.
"There were so many skeptics," she says. "I was not only fighting to feel better, I was constantly having to justify being sick to others because so many people didn't understand. Others view people with chronic fatigue syndrome as unmotivated and lazy."
Jones grew tired of putting hope into new doctors and new techniques to only be disappointed. After numerous attempts with different medications and diets, she decided that taking no medication and small, well-balanced foods was the best choice for her. Her relationship with God, an understanding husband and a daily nap is how she gets through the day.
"It helped me to just accept what it is and live with it," Jones says. "I try to live each day to the fullest and not get so caught up in being sick. It's important for me not to dwell on it."
Today Jones is happily married with two children, which is something that she never thought would be possible with her condition. She says her strong Christian faith is what has made the most difference in her life.
"I really try not to think about the illness itself and how much it has changed my life or that I'll never be better," Jones says. "Some days I'm not able to do as much and some days I'm able to do more. There is life with chronic fatigue syndrome. It may be different and more difficult than originally planned, but it still can be a full, beautiful life."
*Name has been changed.
Editor's Note: Although no cure for chronic fatigue syndrome exists today there is still hope for future research and development. Researchers have been working to find a cure since it was officially accepted as a disease in 1988.
For additional information on chronic fatigue syndrome tune into the chronic fatigue syndrome podcast on MedicineNet.com: Chronic Fatigue Syndrome: Symptoms and Struggle
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Medically reviewed by John A. Daller, MD; American Board of Surgery with subspecialty certification in surgical critical care June 21, 2017