I Don’t Have Time for Fibro

I was inspired to write another article by all of the other wonderful feedback I received from my first, Fibromyalgia in teens.

Some of you were worried about having a diagnosis of Fibro and how and if it would change your life. When my son Nicholas was diagnosed with Fibromyalgia three years ago at the age of fourteen I was relieved. But finding out the diagnosis was a step in the right direction. But only a step.

First of all WHAT IS FIBRO? Fibro is short for fibromyalgia, only given a proper name in the late nineties fibro is still very misunderstood today.

When asked to describe fibro I usually explain that it is like arthritis but effects the muscles. I know that this is not the text book explanation but Doctors are still debating the issue so I’m calling it as I see it!

Most suffers of Fibro are adult women. But not all. Fibro can effect men and women of any age and tends to run in families. Many Doctors do not believe that Fibro is a realistic disease since there is no absolute test to prove or disprove Fibro.

Even now that I KNOW my son has fibro I am still faced with resentment from doctors. Whenever we see a new Doctor and I tell them Nicholas has Fibro they ask me “and HOW do you know he has fibro?”

And I reply “Because his pediatric Rheumatologist has diagnosed him with fibro.” And then comes the “Oh.”

Fibro presents itself differently to different people. Nicholas had stomach problems, sleep problems (had to force him out of bed in the morning since he did not sleep well at night), depression, chronic pain esp in his left side, Nicholas’s back was very stiff could not touch his toes where as other parts of him were “stretchy” (ex. He can bend his thumb back to touch his wrist and his feet flatten out when walks which cause severe pain when he runs).

Being extra stretchy is a sign of fibro as is the stiffness in the back. Many people with fibro have other ailments as well. As if Fibro isn’t enough!! They checked him for arthritis and he has been negative so far. Fibro goes hand in hand with Chronic fatigue, arthritis, restless leg syndrome, chemical sensitivities, allergies and numerous other ailments.

Nicholas takes regular doses of Naproxen for pain and occasional medication to help him sleep. He has good days and bad days. Most days are good, it still takes him longer to get up and going in the morning or late afternoon depending on how he’s feeling. To combat the school system I removed him from public school and we Homeschool. I highly recommend this to anyone having difficulties with the school system. They do not care about children and most are unwilling to work with you. If you DO choose to stay in School I suggest filling out a 504 Plan with the school. (Although be prepared that they will pretend to not know what you are talking about!)

A 504 Plan protects people/children with disabilities whether it is fibro, asthma, diabetes, etc. You have rights!! This is a Federal Law under the Americans with Disabilities act.

Ok where was I? Oh yes! Nicholas’s Fibro does tend to come and go with the weather. Hurricane season? He might peek his head out for dinner. With him being a grumpy teenager on top of the Fibro I have learned to let sleeping dogs lie. Fibro does cause mental confusion many use the term “Fibro Fog.” Where your concentration is low to “nil. Nicholas tends to do his homework in spurts. He will take off a day or two and then will work for 8 hrs straight. He does an online program at his own pace and it has worked out very well. He should graduate in the next month or two.

A wonderful book I ran across is called It”s Not Just Growing Pains: A Guide to Childhood Muscle, Bone and Joint Pain, Rheumatic Diseases, and the Latest Treatments by Thomas J. A. Lehman.

This book really opened my eyes. I started reading it to find out what was wrong with Nicholas before he was diagnosed. But in the pages I found myself. Some of the stories remind me of myself as a child. I was always the slowest one, the last one picked, the clumsy one, the lazy one. I would rather sit under a tree and read a book than to play kick ball. As I said before Fibro tends to run in families. Many believe it to be passed down genetically. I am a single mother with two chronically ill children. Nicholas has fibro and Kidney stones and my other son has Severe Asthma and stomach problems.

Although I have some signs of fibro I have never been tested. I try to push myself through my fatigue and joint pain to go to work everyday because there is no one else to do it. I have to work to be able to provide for my children and myself. After the long trek I have had to face to get Nicholas’s diagnosis I do not have the time, funds or energy to pursue my own diagnosis. And would it make a difference if I was officially diagnosed?

I don’t think so. I don’t think it would change anything, would I be relieved to find out I had fibro? No, at least not now. Perhaps If my condition worsens, there are different stages and degrees of fibro. Thankfully fibro seems to come and go. But as of right now, “I don’t have time for Fibro!”

Thank you and never give up hope!