Thursday, 23 January 2014

No Kidding - Fibromyalgia in Children?

It’s sad, but true. A commonly-held perception of the typical person with fibromyalgia is that she is a middle-aged house-wife or labourer in an office or store somewhere making next to minimum wage who suddenly gets fed up, and/or depressed, and/or angry and says ‘to heck with it all’ and suddenly succumbs to the various aches and pains that she has had all along, along with almost every other woman her age.

Sound familiar?

The problem is that this picture of the typical person with fibro is wrong on almost all counts. This, in fact, is one of many reasons I repeatedly call fibromyalgia ‘the disease of a million myths’.  Let’s look at the various errors in the ‘typical fibro’ picture I described above.

First of all, it has now been shown that roughly half of the women who develop fibro have already done so by age 35, and many by age 25; that’s hardly middle age. Second, if anything, research on psychological profiles has shown that individuals with fibromyalgia tend to be type A personalities who are used to being high achievers; they are hardly the non-productive drains on society some critics slander them as. As a practicing rheumatologist, I saw doctors and lawyers and even a judge whose careers were on hold, because of fibromyalgia.

Third, most are working and not merely housewives (see above). Fourth, somewhere between 10 and 30% are male, depending on the population studied. And up to two-thirds of individuals with fibro drawn from the general community, as opposed to a subspecialty clinic that will tend to see the worst cases, are NOT depressed. I recall one fibro patient of mine who was a real hoot, his sense of humour being one thing that I could always count on.

So now, here comes another bomb-shell that most doctors won’t even consider: fibromyalgia is not at all uncommon in children, including children under ten years old. We’ve known this for awhile. More than a decade ago, researchers in Israel studied grade eight children and discovered that roughly six percent, more than one in twenty, had generalized pain and tenderness, and met the criteria for fibromyalgia. That translates to an average of one to two children per average-sized class.  Others have since studied fibromyalgia in children and found it to be common as well. 

And, contrary to what some naysayers might be thinking, or saying, it’s not just kids imitating a parent. Fibromyalgia has been identified around the world, with published studies in Canada, the United States, Iceland, Germany, Italy, Sweden, Finland, Israel (as I mentioned earlier), Mexico, Brazil and Turkey. In other words, it is not just seen in rich Westernized industrialized countries among spoiled rich kids or depressed less wealthy kids, but in less developed countries as well. In this way, it mimics fibromyalgia in adults, which also is a worldwide problem, and more common in poorer countries like Poland, Pakistan and Bangladesh than in ANY wealthy industrialized country.  And, like fibromyalgia in adults, it is more common in girls than boys, by roughly a two-to-one margin.

Not only is fibromyalgia seen in children and adolescents, but when it exists, it affects them physically, emotionally and socially. This may be particularly true in teenagers, since the teenage years are so crucial to children determining who they are and who they want to be when they reach adulthood. It also is vital because of the importance of social connections during the teenage years, and because of increasing acknowledgement about the frequency and adverse effects of bullying. Consider being the one teenager in your class who can’t participate in sports; or who can’t go to dances; or who is tired all the time; or who has trouble concentrating in class and is repeatedly requiring special attention from the teacher. Now consider having fibromyalgia and having to worry about being ridiculed or, worse yet, physically harmed by your peers. That’s pretty tough if you already feel like you’ve been mauled by a gorilla just waking up in the morning.

It’s a monstrous problem.

But how, you might ask, is it diagnosed in a kid? When should you suspect it in your own kid? What can you do about it once your kid has it? Is there hope? And can anything be done to prevent it?

Before I answer those questions, let me relieve your mind by saying that, just because you yourself have fibromyalgia does not mean that your kid is going to get it. I will admit that there are families who have a specific genetic defect, in whom the disease literally runs through the family – maybe even the cat. This is not to say that everyone has it; but this risk of children having it is greater. This defect involves a particular chemical that your nerves produce to dampen pain.  In these families, this chemical is deficient, which makes sense given that pain is their major symptom. The chemical, in case you are wondering, is called catecholamine-o-methyltransferase.  Try spelling THAT one in Scrabble.  Fortunately, only a small percentage of fibro sufferers have that defect and can pass it on to their children. Otherwise, it appears that the risk of your kid getting fibro is not appreciably greater than the risk any other kid has, which is about 1-2% sometime over the course of life for a boy, and roughly 5-10% for a girl.

Fibromyalgia is diagnosed in a kid in the same way that it is, or should be, diagnosed in an adult. When a child has considerable pain that has lasted months, especially if that pain is not just in one area and not explained by anything else, the child should be examined carefully by their doctor. If the general practitioner is not sure how to proceed, then referral to a paediatrician (a kid doctor) should be the next step. Whoever does the examination, the doctor needs to determine how widespread the pain is, and if the child is diffusely tender to relatively light pressure applied by the examiner’s thumb. A general exam should also be done to look for anything else, as fibromyalgia sometimes accompanies some other illness, like juvenile arthritis.  This may result in the need for laboratory testing and X-rays, but not necessarily. It all depends what examining the patient shows.

Fibromyalgia should be suspected in any child with widespread pain and or fatigue. That being said, many children, especially younger ones, will not come out and complain of these things. As the parent, you should look for signs of such things – like the child dropping out of all sports and/or other activities because of pain or being too tired; the child repeatedly getting injured at sports they used to enjoy without injury; the child becoming socially isolated; or the child suddenly doing less well in school or ceasing to do homework (again, maybe they are too tired or can’t concentrate because of that infamous ‘fibro fog’).

There is less research about how to treat fibromyalgia in children than in adults. As in adults, and despite what some will claim in their book, there is no proven ‘cure’. That is not to say that children, adolescents and adults can’t do well. In fact, in children the outlook is quite a bit better than in adults. In adults, roughly 20% will go into spontaneous remission or notice virtually-complete resolution of symptoms over a decade.  In kids, somewhere around 70% will outgrow it before adulthood. The good news, then, is that seven in ten will outgrow it. The bad news is that three in ten will not.  So what is done for those kids? Some of you may have been kids like this, who continue to struggle with fibromyalgia that started way back when, when you were only a kid or teenager. Invariably, when I give talks, I ask people to raise their hands if their diffuse pain started before age twenty, and at least 10 to 20% of those in the audience do so.

So what can be done? Well... management in children should focus more on education, exercise, diet and emotional support than on medication, primarily because medications carry a greater risk in the child. And who wants their kid on medication forever anyway? 

I fall back on my ESCAPE principles of fibro management.

E = Educate yourself and your child about what fibromyalgia is and isn’t. The more you and your child understand fibro, the better you both will be at (1) coping with it; and more importantly (2) making good choices.  For example, letting your child drop out of sports altogether because he or she can no longer play rugby or field hockey may be a bit extreme.  Encourage them to get into some gentler, non-contact athletic activity like swimming or aerobics. And allowing them to be placed on an anti-inflammatory makes little sense, once you know that fibromyalgia is NOT caused by inflammation in muscles.

S = Surround yourself/your child with the right type of support.  If your child’s doctor thinks he or she is just acting out and should not be believed, find another doctor if at all possible, or ask for your child to be referred to a paediatrician who should know better than that. And, if possible, find a good therapist or three. Find out where your nearest fibromyalgia support group is and attend an occasional meeting; you almost certainly will meet some young people (teens and twenties) with fibro there.

C = Consider fibro a systemic disease, and not just a disease of sore muscles; because it IS a multi-systemic disease. For this reason, your child’s overall health must be monitored, including issues like proper diet.

A = Accept that there is no little pink pill that is going to cure everything.  I tell people that I had a perfect record when I was still in practice treating fibromyalgia patients – I cured absolutely nobody. That is not to say that some didn’t get better on their own. But the management of fibro almost always must be multi-dimensional.  Even if some cream or pill IS found that relieves your child’s pain, issues like exercise and proper posture and diet remain important, and these issues must be addressed if you want your child to maintain health into adulthood, whether or not they outgrow the fibro itself.

P = Pin-Point the right diagnosis.  In adults, fibro is often used as a garbage pail diagnosis; it is what the doctor says you have when all the tests come back negative. But fibro should NEVER be treated that way. First of all, people can have fibro and something else too. And second, people can have something else and fibro too. What I mean by this is that your child may have very fixable problems (like a fallen arch in their foot) that will be ignored and allowed to persist if everyone stops looking for other things once the diagnosis of fibro is made. 

And the final E of ESCAPE = Enjoy life as much as you can, as much as your child can. I once had a patient who was very depressed because he couldn’t work anymore. As I got to know him, I found out that he absolutely loved trains (I do too), and that he lived in a town with the area’s largest railway museum.  I suggested that he try volunteering, even just an hour or two a week. The last time I saw him, he was volunteering 30 hours a week and didn’t miss not working at all. He’d learned to live on his limited, pension-related income, which in fact was supplemented a bit because the museum paid him for certain things he did, knowing that he was out of work.

Fibromyalgia is a terrible disease when it is undiagnosed and/or ignored and/or untreated or mistreated. And it is an especially terrible thing to wish on a kid. That being said, most children will outgrow it before they reach adulthood. And those who don’t are young enough not to be firmly set in harmful routines.

There is hope for the child or teen with fibro... a lot of hope. And about that, I’d NEVER kid.

Kevin P. White, MD, PhD
Best-selling, five-time award-winning author of
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