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 "Photo: Joshua Lynch | The Spectator")
 "Photo: Joshua Lynch | The Spectator")
The mashed potatoes and biscuits look tiny at the center of her plate.
Amanda Rinkel picks at her food a little bit as family dinner starts Saturday in her Puyallup home. She doesn't need to hurry-her mom, dad and brother have some catching up to do.
They have pasta, broccoli, salad and the same biscuits and mashed potatoes to finish. Not to mention one of Amanda's dad Tom's specialties, "beer-can chicken."
Amanda, a creative writing major at Seattle University, sits quietly through most of the dinner conversation, her long dark-brown hair threatening to fall in her food as her head tilts down.
She's tired, though it's around 5 p.m. and she didn't get out of bed until her cat, Truie, paid her a visit at 11.
Amanda's limited diet and her exhaustion are just two challenges she faces daily, but her chronic pain tops the list. Today Amanda says it's seven out of 10 on the pain scale, with 10 qualifying someone for a ride to the ER.
In fact, it would hurt if someone gave her a hug. Her family knows better than to give her a bear hug.
"Literally, if someone hugs me," she says, "I might cry-and I have before."
Amanda has chronic fatigue syndrome (CFS) and fibromyalgia, two complex and chronic illnesses doctors know little about. An estimated 10 million Americans have fibromyalgia, while 4 million are believed to have CFS. Symptoms and their severity vary-with Amanda on the wrong end of the spectrum.
"The nature of fibro," Amanda says, "is that 20 different people will explain their pain in a different way."
Amanda likens her pain to gasoline pouring through her veins. She says her headaches are like having something wrapped tightly around her head. Her bone pain is "deep and sharp" and is present most days of the week. Today it's in her hips, and she moves gingerly because of it. The CFS makes her feel like she has been swimming with 20 pound weights, and sometimes her body is so heavy she can't get up.
Her twin brother, Nick, doesn't have either illness. But he chimes in to help her find words for her symptoms.
"I got four words to describe it: Pain in the butt," he says, emphasizing each word.
Few people her age can understand a life plagued daily by debilitating joint and headache pain, fatigue and a host of other symptoms. But Amanda looks forward to graduating next year, at the age of 26, having experienced it every day since it suddenly began her senior year of high school.
A LONG ROAD TO ANSWERS
Amanda was born on Friday Jan., 13, 1984, which she considers to be lucky despite its superstitious implications. She was a gymnast until she was 14. Her neighbor, Tony Isaac, remembers her bouncing across the Rinkel's front yard or coming up to the chain link fences to say hello.
Amanda steered away from athletics in high school, focusing on work at the Children's World Learning Center teaching Spanish and extracurricular activities like being a student council representative. A skiing accident in 2001 required surgery on her knees, and just as she was getting ready to be active again, a horrible headache hit her. It didn't get better.
It was Oct. 8, 2001. Amanda recalls the exact date without a problem, though the "brain fog" CFS and fibromyalgia patients have actually makes her forget her phone number sometimes. She began a long series of blood draws, MRIs, spinal taps and blood draws again. Doctors couldn't seem to pinpoint what was ailing her.
"Every scary word you could think of, they say they're going to test you for it," Amanda says.
Meanwhile, Amanda stopped attending school, though her guidance counselor came up with a plan to help her graduate. She still made it to her senior prom and a brief senior trip to the Bahamas with friends.
But Amanda's diagnoses were climbing into the double digits, and she was fainting often. Nick remembers picking her up off the floor at least 15 times.
"We didn't know if she was going to wake up the next morning," says Lisa Rinkel, Amanda's mom. "It was horrible. It was living hell."
Amanda had been planning on becoming a nursing student at Seattle University, where she had been accepted. After so many trips to the doctors, that career was becoming less and less appealing. And college was going to be impossible in her current state.
"It was a devastating time to be almost reborn," Amanda says. "My plans weren't my path any longer. I didn't do a lot because I couldn't. I was just living in my head. I call them my lost years."
Amanda's first solid diagnosis was that she had CFS, and by early 2003, more than a year after that horrible headache, Amanda was diagnosed with fibromyalgia, too. She was incredibly relieved by the diagnosis.
"She helped her doctors diagnose her with all of her research," Lisa says, beaming with pride. "She sure did."
But having a diagnosis was only part blessing. As Amanda explains, doctors don't have real treatments or cures for fibromyalgia or CFS.
"They can just treat individual symptoms."
LIFE AFTER THE 'LOST YEARS'
After finishing dinner with the family, Amanda admits she is really tired. She heads to her tiny room in the basement of the house and pulls a box out from under her bed.
Though it's the size of shoebox, it's Amanda's pill box. After a minute or two of calculations, Amanda determines she takes 23 pills daily, excluding some pain pills she takes as needed. Some are supplements to bolster her meager diet, and Amanda says her favorites are the Flintstones chewable vitamins. On Friday, Amanda went to the store and spent $80 on supplements. It's all part of the plan made by her team of seven regularly-visited doctors.
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