Sunday, October 21, 2007

Juvenile Primary Fibromyalgia Syndrome

Editor's note: I'nm not coming up high on searches anymore, but I'm glad I wrote nonetheless. I fixed the link below, if you want to look at Devin's list.

When I discovered that I am the second link you get on a google search of Colorado Juvenile Fibromyalgia, I decided I'd better write this all down.

We went to the doctor about whether or not my son has JPFS, and she belittled me and referred us to a psychiatrist--and wanted to send someone over to evaluate our son in our home to be sure it's not the home environment (read "his mother") that's causing the problems. The answer is no. You can evaluate what happens when he tries to handwrite just as easily in an office. And nobody is going to want to sit up until 6:00 am with me just to prove that he really can't fall asleep, even though we're doing everything right at bedtime (yes, I've fixed our "sleep hygiene").

So I did more research and discovered that mostly JPFS is diagnosed in teens.

I am not a doctor. I'm a mother. And a person who has lived with fibro in myself and my family all my life. Here are my thoughts on the issue:

The basic foundation of my ideas is simple. IF fibro is genetic (which the studies are saying is true), then it is something you are born with.

That means that you have it when you're a baby, and when you're a kid, and when you're a grownup. This is something nobody is denying.

IF fibro really is a hypersensitivity of the central nervous system (cause: genetics), THEN anyone who has fibro, regardless of age, should have the symptoms of a hypersensitive central nervous system.

SO I've looked at "Devin's List" (here)(, and those symptoms of just fibro, not of myofascial pain, should show up in children. The pain maybe not because mostly they haven't had a chance for the myofascial pain to develop until they are teens. This is why kids are not diagnosed until they are teens.

The problem is the diagnostic criteria for fibro for adults have been applied to kids, and the pain is one of the diagnostic criteria. But the pain is a side result of the fibro, not an actual symptom of it (see Devin's book and website for more on this). So to diagnose fibro in children, you would have to go with some core criteria rather than the adult diagnotics. The hypersensitivity of the CNS would be there, even if the pain is not. This is not an unsupported statement. A quick review of the abstracts of studies on JPFS (using Google Scholar) makes it clear that studies have established this already. The pain, dizziness, headaches, etc. are not any more frequent in children with fibro than they are in children without. Those are actually symptoms, according to Devin, or myofascial pain that accompanies fibro.

So to properly diagnose children with fibromyalgia, the researchers indicated that the only diagnotic criteria that are reliable are sleep disturbances (not "not refreshing sleep" that some people use, but just disturbances) and tenderpoints, which JPFS sufferers have. If you carefully read Devin's diagnostic list, you'll see that other symptoms of FMS could occur in children, but they would be attributed to other things.

Notably, those symptoms could easily be attributed to ADD. And sometimes the treatments would work, since both disorders affect (or are caused by--nobody knows for sure) both the dopamine and serotonin systems in the brain. Some people, apparently, have even had success treating fibro with L-tyrosine (a fairly effective home remedy for ADD) because it increases the amount of dopamine in the body (it's a dopamine precursor)--and ADD and Fibro have dopamine receptor issues (different dopamine receptors are affected in the different disorders, but increasing dopamine available wouldn't be selective in that matter).

ANYWAY, I think it could be tragic for a kid with Fibro to be diagnosed with ADD because then you're treating a very physical disorder with psychiatric drugs (not to say ADD isn't physical--I think it's also a physical disability). Psychiatric drugs are good things--if you have a problem that they help. But kids, especially who have still-developing brains, don't need their development messed with haphazardly.

Some random thoughts, now, about the specific symptoms and the kids (and the ease of misdiagnosing this):

According to Devin, fibro can include a tendency to cry easily. Also a tendency to become overstimulated. How many kids are labeled "sensitive" or "emotional" when it might actually be fibro? This tendency to be overstimulated can show up in newborns--even parenting manuals discuss it. At least in my kid, the overstimulation is expressed through hyperactivity--making him look like he has ADHD in public places with bright lights and lots of other people or new things to look at (like medical equipment or books or new toys). Likewise, the common fibro symptoms of anxiety, mood swings, unaccountable irritability, and difficulty concentrating would automatically point to ADD in a kid to most doctors, teachers, and parents. Add that to the fact that, by the time a fibro kid is school aged, they are struggling with the common side effects of sleep deprivation (because they are forced to get up even if they haven't slept and get to school), which mirror ADD too, and the discomfort sitting, which makes them squirmy. I suspect that "fibro kids" are inclined to not stay in their seats in school, not because they have ADHD and can't sit still but because the chairs are so unbearably uncomfortable that they eventually have to hop up and move around quickly to relieve the pain, just like adults with fibro do. Likewise, kids with fibro might have the common tendency to "space out" (like some ADD kids--especially, you might note, girls who have been diagnosed with ADD)(significant if you remember that fibro is more often diagnosed in women than men), the inability to hold their arms up (and therefore raise their hands in class--and therefore participate in classes at all), the very common avoidance of handwriting anything (giving them the "standard add" bad handwriting because they can't stand to hold the pen long enough to practice to get good handwriting). The physical and emotional sensitivity, along with a tendency to bruise and scar easily, that go with fibro would make it difficult for a kid with fibro to join in the regular sports and playground activities that a "normal" kid would have fun doing (for example, they would get hurt easily by being hit by a ball, and then they would be embarrassed because, no matter what they tried, they would cry about it). Not to mention they are often diagnosed with "growing pains" that exacerbate everything. And the muscle twitches that look like you have a motor tic, especially if they're on your face. Plus they've always got a runny nose (that's fibro) and are "allergic" to not just common allergens but also to changes in the weather (like rain or snow), and there's that annoying post-nasal drip that sometimes interferes with how clearly they can talk. And the sleep problems...I hardly want to go there. Suffice it to say that inability to fall asleep is often seen as a symptom of ADHD.

And, to make it all worse, fibro "cycles"--the kids have good days and bad days, just like adult sufferers, so sometimes they focus just fine and can do things, and other times they can't, so nobody would ever believe there might be a problem.

Even being in school would be difficult for JPFS kids because of weird things you'd never think of: getting up in the morning is hard for JPFS kids because of lots of aspects of fibro; wearing anything in their hair is painful for girls so they can't ever really be "in style" with their hair; they space out; inability to hold up your arms would make it hard to write on the chalkboard, hold a book, raise your hand to answer a question, participate in PE, get lunch in the lunch line, etc; difficulty sitting would make it hard to even be in class for the legally mandated 5 hours of learning a day.

Add to that the complication of not ever realizing you might be in pain (because you might not be--you just can't stand to hand write anything or raise your hand for some reason). Many adults with fibro block out the pain or simply aren't conscious of it until they think about it. Instead, they simply avoid certain activites but can't understand why. If you were a kid, this would be hard. You could never explain why you don't participate or hold still. You just can't, and trying harder makes you feel tense and that makes it all worse. So you can't tell someone why you didn't get your homework done (because you had to write a full page, and you just can't make yourself do it), but you can't say that anything hurts or that you feel out of the ordinary. Everyone (parents, teachers, friends)would be upset at you all the time. You would constantly hear "Why can't you just get it done?!" and you would wonder, yourself, "why not?" Just like I wondered for years why I couldn't just wash the dishes and pick up the toys.

How would that be for your self esteem? It's hard enough for grownups...imagine if you're six!

And nobody, of course, is pointing out that a senstive central nervous system isn't all bad. We just focus on the bad because it can be debilitating. But that's another blog post for another day. One about how fibro is one of those "superpowers" that also had handicaps attached (I can hear softer sounds than most people--oh, that means that moderately loud sounds are unbearable!)

Anyway, I'm sure there will be more on this soon. I just am starting to think I need to find out who to call to get this better known as a problem.....

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