My son Nicholas was diagnosed with Fibro two years ago when he was fourteen. Looking back I can honestly say he was exhibiting symptoms since he was eight. Nicholas was always my “healthy child” his younger brother had severe asthma since he was an infant.
He mostly complained about stomach and back pain. His chief complaints: my stomach hurts, my side hurts (left side). So we went to the doctor again and again and again. We saw lots of doctors pediatricians, urologist, gastroenterolgist, nephrologists, orthopedics, psychiatrists, psychologists. You name it. They did tests urine, blood, x-rays, ultrasounds, catscans.
He ended up in Children’s Hospital for a week on morphine when they found a kidney stone. According to the doctors a stone too small to be causing him any pain. So what was causing the pain? They didn’t know. So went through phases. He would double over in pain and I would take him to the doctor and nothing. He’s fine. There’s nothing wrong.
He missed lots of school so then he was making it up to miss school. He was depressed. I was depressed. Some gave him drugs. Percocet, darvocet, Tylenol 3 with codeine. They helped sometimes a little. Mostly they would knock him out. We had a teacher come out to the house. It is very difficult to get a Dr. to write an excuse when they don’t know what is wrong. Eventually we ended up Homeschooling. And the pain still continued . So much for the hates school theory!
We switched Doctors again and again and again. I looked online. I talked to everybody, anybody who would listen to me. There is something wrong with my child! He had pain off and on, he had frequent low grade fevers, he couldn’t sleep at night, he was lethargic, he didn’t want to leave the house, he was depressed, he had to stop playing baseball because his feet hurt when he ran, he dropped out of Boy Scouts. And no one listened. No one cared.
Then I found a wonderful doctor. A kidney specialist. He listened to me. He listened to Nicholas and he said the most wonderful words. “This isn’t normal. There is something wrong.” He did tests. He did an ANA test. It came back positive. He thought he might have lupus. He referred me to a Rheumatologists.
Okay I had something! I did research it could be lupus. No he’s not a middle age woman but who cares. I was looking for an answer. We showed up at the rheum’s office. All I had was a large stack of medical records and hope. We went in. Then she asked for the records. She picked up the ANA report and immediately tells me that the lab made a mistake. They read the results wrong his test is negative he doesn‘t have lupus. I was crushed. Which is horrible! I’m glad he doesn’t have lupus but I wanted to find out what he did have.
She sat down and thoroughly quizzed us. She made notes. She asked about everything. Nicholas was telling her his symptoms. About the pain how his legs jerk at night and he thinks he has “Restless leg syndrome like on TV.” At this point I felt like crawling out of there. He never mentioned it to me before. We had been rejected by so many doctors and now he’s taking about this crazy thing he saw on TV. She was just nodding and writing notes. Lots and lots of notes. She then begins examining him. “He’s very stretchy”. She says. I mention his feet hurt when he runs because his arch straightens out according to the foot drs. She nods. She has him touch his toes. He misses by about a foot. She says he’s stiff. How can you be stiff and stretchy at the same time? I wondered. She finishes the exam and announces that he has Fibromyalgia. I couldn’t breathe. “You think he has fibro?” I asked. “No, I know he has Fibromyalgia, he is a textbook case.”
And there it was the answer. He wasn’t crazy. I wasn’t crazy. It is real. Fibro is real. And there is hope and people who believe. Nicholas has been doing much better lately. He still has bad days but they don’t seem quit as bad.
