Living with Chronic Fatigue Syndrome
One Patient's Story
By Angela Generoso
Reviewed by William Shiel, MD, FACP, FACR
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.