Growing Up Fibro

Growing Up Fibro

Many fibromyalgia patients have horror stories to tell about their arduous journey from onset to diagnosis. Depending on which source you believe, the process typically takes anywhere from two to five years. My situation was far from typical. My symptoms began in childhood.

Instead of the “invisible friend” other kids had, I had pain as a constant companion. Dismissed by my mother and our family doc as “growing pains,” I learned to accept it as normal. My weak immune system provided little defense against the illnesses that raced around the classroom. If the other kids had the flu for one week, I had it for three. Some years I missed more days of school than I attended.

Insomnia was then, and remains today, a nightly scourge. On sleepless nights as a child, I’d lie in bed and focus on the parts of my body that hurt the most. I was practicing meditation before I’d even heard the word. I discovered under-the-covers reading with a flashlight at a very young age. But I wasn’t fooling anybody. My mother (an avid Jack Paar fan) occasionally whispered at my bedroom door, “Are you still awake?” Thus, I was introduced to late-night entertainers other kids my age would never meet. I heard the genius of Oscar Levant at the piano. I met the writer Jack Douglas and his Japanese wife, Reiko, and laughed out loud when they named their baby Huckleberry Hashimoto. I even saw a lady with a talking German shepherd. Perhaps my mom understood my plight better than I knew. At any rate, this access to grown-up activity made my pain more bearable.

I couldn’t run as far or as fast as other kids. I got winded or developed pain in my side if I tried. But summer vacations saved me. Every available moment was spent in a swimming pool where I could excel. The buoyancy of the water evened out the differences between my ability and theirs. To this day, I love to swim. And, fortunately for me, it’s excellent therapy for FM. In fact, a 2016 Science Daily article reported that swimming reduced pain intensity by 50 percent in a 12-week study.

The pool also was my only relief from the heat. I truly suffered in the days before air conditioning. Nausea was common when the temperature rose. My well-meaning mother’s urging to “just eat something” often resulted in losing my lunch. To this day, I don’t do well in the heat. Actually, I don’t do well in the cold, either. To compensate, I always dress in layers and leave home with clothing changes in my car.

As a child, I was embarrassed by my fragility. I wanted to be tough and adaptable like the other kids. I never wanted to be a prima donna, but my sensitive body made me one. That fact of life was a constant struggle.

Imagine my relief in 1990 when diagnostic criteria for fibromyalgia first became available. At the ripe old age of 43, I learned there actually was a name for my condition. Hallelujah! I was not the hypochondriac I always thought I was. Of course, the diagnosis didn’t cure me. But I did feel better about myself. I was less disappointed in my limitations and more proud of my achievements.

Although unanswered questions remain, juvenile-onset fibromyalgia is a recognized illness today. The Mayo Clinic estimates that 2%-6% of school children are affected by it. The majority are girls who are most likely to be diagnosed between the ages of 13 and 15. Today’s symptomatic child is less likely to be misunderstood, as I was. Once a correct diagnosis is made, helpful treatment options are available.

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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

11 comments

  1. Chris says:

    Thank you so much for writing this article. When I saw it posted, I jumped as fast as I could to read it. I’m 46 and recently diagnosed with FM, and I too grew up with “growing pains” and horrible insomnia. As a child, I would lay in bed and try not to move any muscle, not even a twitch, because if I could lay perfectly still, I might avoid the explosion of pain that would happen in my legs if I moved. When I was diagnosed in April of this year, I told my rheumatologist that the “growing pains” I experienced in my legs as a child is exactly like some of the pain I experience today. He enlightened me that those weren’t growing pains, it was juvenile onset FM. Even writing this right now it makes me cry because 46 years of *shit* finally make sense. I can’t tell you how many times I accused myself of being a hypochondriac and questioned my sanity. So, again, thank you so much for sharing your experience. It helps people like me more than you probably know. Even still, I’m sorry you have had to endure FM. And, I’m going to take up swimming!

  2. Donna says:

    I completely understand. I had childhood onset of Fibro as well. I can remember as early as 8ys old terrible back pain.There is truth to what they say how resilent kids are. The pain was so severe! but I would walk miles a day with my friends. rode my bike & I even wore clogs & high heel shoes. The pain was always there. It was normalfor me. I didn’t know any different. I complained to my mom for may years. she was a single mom & didn’t have $ for Drs. & test. My sister talked her into buying me a waterbed thinking it was my mattress.No difference, except I loved the waterbed. Finally around 12-13 she took me to a specialst who said I had inflamation of the vertabrae. Treatment made me a little better for a while. Over the years in my 20’s 30’s. 25 yrs later I happen to come across the samed dr.that treated earlier. I went to him with 4″thick of test results etc. I told him I think I have Fibro. He said he has no doubt that i do. the earlier diagnoses was tyipical before they didn’t know about Fibro. I now see signs in my 2 daughters. The oldest was diagnosed at 25 with psoriatic arthritis. Dr. told her that is in the same family of inflamation as fibro.This is devastating to me. My younger daughter 17 shows signs of fibro as well. They keep saying “thanks mom for giving us this!” I said but I had to get it from somewhere too. My mom passed away when I was 19. So i can’t talk to her about it. However, I do remember seeing my mom looking out the window & saying “I don’t understand why a hurt so much all the time.”?

  3. Anita says:

    I cried when I read your article. I’ve come to realize that my illness is something that I’ve had my entire life. Or so it seems. Everything that you mentioned above, I’ve been thru! Imagine my surprise to find out that someone else had what I had for so many years. If someone sneezes a block away from me, I’ll get sick. It’s embarrassing at work when I call in sick, cause the comment is always…You need to get healthier, eat better, lose weight, etc. I’m 47 now and was finally diagnosed about 10 years ago. I still battle doctors that look at me like “it’s all in my head”. I still find myself justifying why I have FM. Even though I’ve been officially diagnosed with it.
    Again, thank you for writing about this issue.

    • Chris says:

      I can’t believe you have to battle with doctors these days! And for folks at work to tell you to get healthier, etc. It all makes me mad! Such ignorance and lack of empathy. I hope you can be strong in the face of it all and above all else, love yourself!

  4. StevefromMA says:

    I sure was not happy getting FM 30 years ago at 40 but I do often think of kids with this and how hard it must be. I think I said that in my interview, hopefully won’t be cut. Very glad you found water helpful, one treatment I haven’t explored since I’m a terrible swimmer and not comfortable at all in water, despite living a mile from the beach for 30 years. No local pools to access.

  5. Sherri says:

    I suffered with ‘growing pains’ as a child, and later found out that other relatives did as well. They didn’t get fibromyalgia until later in life – I had it by the time I was a preteen. One of the hard things was having teachers who didn’t understand and thought you were just wanting to get out of PE class. I’m glad that people are now learning more about it and that there is scientific proof that it is not all in your head, or that you just want to be treated special.

  6. Nicky Leeuw says:

    Thank you for the gift of this article. To know that one is not alone and that others have battled the same difficulties including self-doubt and despondency, somehow helps. I wish all my fellow sufferers healing and strength.

  7. Ian Hodgson PhD says:

    I have had FM/ME for 21 years. I didn’t have it as a child. My daughter has ME with significant chemical hypersensitivity. Her son (my grandson) has juvenile FM/ME and rarely attends school. He tries most days but is often sent home around midday. Since he began high-school the deodorants that the others (boys mainly) use ensure his pain,disorientation and fatigue increase. Unfortunately there is little understanding of this illness in much of Australia with the exception of Adelaide hospital. In some ways he is fortunate to have a Mum and grandfather who know a lot about his illness.

  8. Gryfalcon says:

    Thank you for this article. There are few articles about the experience of a child growing up with fibro, or a parent trying to parent such a child. Most such articles are about parents with fibro trying to parent a healthy child. One thing my daughter once said was “I thought everyone had random stabbing pains all over their body all the time, so I didn’t know to tell anyone that anything was wrong.” Another memorable moment was when my daughter was hooked up to a biofeedback machine FOUR YEARS after we first started going to the pain clinic, and the doctors said “NOW, we know that the pain you have been complaining about is real.” That pretty much sums up how doctors were worse than useless. They were actually harmful. Years after they tried to put my young teen on Lyrica, without telling us about the horrible side effects like x-rated slasher dreams, I find out it is also horribly addictive and is being abused as a recreational drug. This is the kind of “help” kids with fibro get from their doctors.

  9. Dharma says:

    I wouldn’t wish this on anyone. Each time I hear of someone else enduring the same pain, and finding out that they too were treated so dismissively, it breaks my heart a little more. Like you, my entire life was affected by this dreaded disease…and so many others have been as well (except we were made to feel isolated, that it was “all in our heads”). There are other issues that I’ve endured: hyper-sensitivity to sights/sounds/smells/touch; as well as emotional hyper-sensitivity when criticized because no one understood the hell I had to endure or knew that I have no intention of making anyone else’s life difficult, only better (because I KNEW what it was to be treated poorly!) There is also a link to Autism Spectrum Disorder (Asperger’s) that is a difference in brain wiring. Not many specialists are familiar with this, and many children (girls) have been overlooked because they present differently from males. It compounds the problem because often a child/teen/adult will not know how to/be able to express their needs, and when they try are dismissed instead of heard. I pray society becomes better at realizing we are ALL different, and those differences should be accepted so that each of us has dignity. Nobody deserves to be faulted for something beyond their control.

  10. Eden says:

    The more I read about FM, the more my life makes sense. A year or two before puberty was when my pain really started. I was a pretty active kid (always heavy, though) but around this time, my ankles started to hurt too badly to rollerblade or ice skate anymore. After that, it was my knees, my wrists… of course they blamed this on my weight. They’d blame it on stress, depression, anything easy.

    I applied for a medical marijuana card when I was 20, still not knowing where my pain came from. The doctor who saw me said “probably arthritis”. So I go back to my family doctor to address the issue. She immediately begins treating me for arthritis. A couple years later, I wound up in an urgent care center due to the severity of my pain. They took an x-ray of my wrist, and informed me that I didn’t have arthritis. They sent me home with no real answers (probably after assuming I was a “drug-seeker”).

    I didn’t get my FM diagnosis until I was 22. This had been an issue in my life for over 12 years, and probably could have been addressed a lot sooner had my doctors taken me seriously and considered this an option.

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