Chronic Fatigue Syndrome (cont.)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.