Can't remember the last good night's sleep? CFS a possibility

By Natalie Andrews

May 24, 2005 | Orange, orange, green, green, orange.

Five neon cylindrical earplugs are scattered on Natalie Nyman's nightstand. Nearby is a picture of her walking across the stage in a cap and gown at her high school graduation last year.

Her bed rises above the nightstand, not because of the cinderblocks that help prop it up, but because the mattress is twice the standard size.

A mattress pad, a body-molding foam pad and three down comforters envelope the mattress to give it its feeling of softness, making it look like a giant's powder puff applicator.

Still, while she is in bed, Nyman sometimes doesn't fall asleep until 5 in the morning. She spends most nights at her apartment. However, when it's too noisy for earplugs, she has back-up bedrooms at her grandmother's and aunt's.

The bed is big and soft because it helps Nyman rest, and sleep is important to Nyman. She is always tired. Her body feels run down, though she tries to take care of it through diet-she eats fresh fruit and avoids white flour and sugar. She keeps herself on a set schedule and bedtime-she tries to get to bed by 10:30 at night.

"Here's the thing. I'm happy to be alive, so in that sense, most mornings I wake up, I feel great because it's just another day. But as far as feeling well rested, I can't think of that -- it's been a long time," Nyman said laughing, showing her attitude on life. She doesn't remember the last time she felt energized after sleeping.

Nyman has chronic fatigue syndrome, or CFS, which is a condition the immune system resorts to when it's too worn out to bounce back. Like a car battery that can't get a jump start, both are run down, but Nyman has to keep going.

"I hate feeling inhibited by it," Nyman said, wearing a red sweater, jeans and a "Don't mess with Texas" shirt.

Dr. Jim Davis, director of Utah State University's Health and Wellness Center, has presented talks on sleep disorders and sees many students believing they have CFS. He looks at CFS as difficult to diagnose because it is done by eliminating everything else that the disease isn't.

"It's so subjective. There's no real evidence for chronic fatigue. You are from the very beginning relying on someone's opinion on whether they are healthy or unhealthy," Davis said.

Nyman has also seen her CFS fluctuate. In February she had a serious relapse and spend three to four nights a week at her aunt's or grandmother's house because she needed the quiet. Now, she spends probably one to two nights a week there, and most of the time she can manage through diet, exercise -- Nyman plays tennis -- and medication.

The diagnosis is one of elimination of other possibilities, blood testing and time. Types of diseases eliminated range from the flu and HIV to eating disorders and schizophrenia. The American Academy of Family Physicians provides a list of diseases a page and a half long to eliminate before a diagnosis of CFS can be given.

The federal Centers for Disease Control and Prevention requires the patient to be showing symptoms for at least six consecutive months, with no other explainable reason. Any explainable reason for fatigue include late nights studying, partying, depression, hormones, etc. Besides fatigue and trouble sleeping like to Nyman has, symptoms include sore lymph nodes, sore throat, muscle soreness and weak concentration.

While Davis has seen many patients at USU previously diagnosed with CFS, he has only diagnosed two with CFS during his time at the Wellness Center. Rarely are patients under his care, in low-stress conditions for six months.

"It's fraught with difficulty in testing and measuring," Davis said.

Nyman doesn't tell a lot of people about having CFS because a lot people doubt the legitimacy of it, telling her that it's college and that everyone is tired. Davis agrees that CFS can be over diagnosed, but it is real. Both remind that there are a lot more symptoms to CFS than just being tired-including a lasting sore throat and achy muscles.

Because these symptoms are also symptoms for the other diseases mentioned, this is why CFS is a diagnosis of elimination as well. CFS's final proof will show up in blood tests because it is a weakness of the immune system. Thus, white blood cell, red blood cell and T-cell counts will be abnormal, Davis said.

Nyman recalled her original diagnosis as a junior in high school: "We'd done lots and lots of blood tests for lots of different things. I was grateful to see that there was a category that I could be put into just because then it gave us direction to go in how to take care of it." The other orange earplug is in her hand, she rolls it back and forth between her fingers as she talks.

Nyman was originally scared to go to college because she didn't want to miss fun things. "You just can't do social things if you're in bed at 10:30 every night," Nyman said. Her night-owlish roommates have worked around her, they see the early movie and eat earlier, but nights are hard because Nyman goes to bed early and everyone else stays up late.

She never used earplugs when she lived at home. Brianna Barton, the girl she shares a room with, places her pajamas and scriptures outside of their room before Nyman goes to bed, so she doesn't have to turn on the light when she's ready to go to bed.

"I have to get my sleep, but I have to have fun, too," Nyman continued. She does stay out late a few times a week-talking to boys, on dates, or with friends, and so she's gotten used to taking naps whenever possible. When she was 13 minutes early for a doctor's appointment, she set the alarm on her cell phone for 12 minutes and lay down in her car.

Treatment for CFS varies based on what works for the patient. A review of lifestyle is important, and research from a Cochrane Review report shows that exercise is helpful. Because patients are often depressed about being tired and missing out on life, Davis prescribes an antidepressant, usually Effexor because it is an agitator that aides in the production of adrenaline, or energy. He also makes sure his patients are taking a good balance of vitamins.

Nyman takes St. John's wort daily instead of a prescription anti-depressant, preferring to go for a natural remedy. She feels that it works like a prescription.

When she has a hard time sleeping, Nyman has prescriptions for sleep drugs Ambien and Restorel-during her relapse of CFS this February, Nyman took Ambien three to four times a week. To balance her weak immune system, Nyman takes several vitamins a day, believing it's all about balance.

While she waits for this relapse to pass-maybe this summer when she's on a more set schedule, her body will be able to successful get a jump start renewal on life-the best way to fall asleep, according to Davis, Nyman, and the Sleep Disorder Clinic of Salt Lake City is to avoid caffeine and distractions. This includes an alarm clock near the bed and noise.

Natalie takes this a step further with ear plugs.

"I'm a thinker, so I mull things over and stay up at night and…analyze things to death," Nyman said.

Before she falls asleep, she prepares herself by reading or watching something light-hearted-she has two small picture books by her bed to look at. Then, she sticks her earplugs in and curls up. If it takes her longer than an half-an-hour, she gets back up and does something else.

"My big thing is getting my mind off of the craziness of my day and everything going on," Nyman said about lying awake at night.

Nyman is one of many with this problem. Davis' favorite quote, when it comes to students is from a comic, "Don't tell me not to burn the candle at both ends, just tell me where to get more wax," Davis said that is what so many students seem to be telling him, instead of heeding his advice to relax.

Davis sees many students depriving themselves of sleep, and worries that they could end up with a weak immune system, like Nyman, who was her high school class president, involved in the choir, and musical, when she was diagnosed. Now, because of the lifestyle she's lived, Nyman must worry about her future.

Nyman worries about having a family and pregnancy because of the effects it has on a woman's body. Doctors have told her that her body could, from a hormonal standpoint, "whack" when she has children.

"You're going to need more energy than I think anyone comprehends until they're there, to be a mom," Nyman said laughing.

From a professional standpoint, Davis hesitates to diagnose someone with CFS until he is absolutely sure because the title can make it harder for someone to get insured or be employable, even if they are not struggling with symptoms of CFS at that moment.

CFS can come from not taking care of one's body. Davis's main concern for students is they "don't get very much sleep, don't eat well, and most of them don't get enough exercise."

"Balance is important. It's really important to feel balanced," Davis said. Davis has only diagnosed two students with CFS during his time at the Health Center, but he often doesn't see patients for the full six months required for an accurate diagnosis.

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