Poll Results: Are you having trouble finding a good specialist?

In an earlier blog, I wrote about how fewer and fewer specialists were wanting to see fibro patients, especially among rheumatologists (arthritis specialists).

The results of the latest poll confirm that this is a huge problem.

As you can see, in this poll, 90% of you were having a lot of difficulty, and only one in 16 of you found one without problems.  I also note that no one said they weren't looking.  Now, admittedly, it may be that those who aren't looking for a specialist aren't looking at my website either, or maybe not at this poll.  But the 94% having difficulties among those looking is still very concerning.

I continue to do what I can to educate non-fibro people about fibro, through my book and my talks (which is why I am so busy).  But I can't do it alone.  I encourage you, please, to go to your local library the next time you are passing by it and ask them to get a copy of my book (either in print or as an eBook).  I'll cost you nothing but will give others the opportunity to find out for themselves some of the answers they are looking for.

Thanks

Kevin P White, MD, PhD

THE DAY THE LAUGHTER DIED (A tribute to Robin Williams)

“A long, long time ago, I can still remember how the music used to make me smile”

—     Don McLean, American Pie

I was still a kid in the year 1971, when Don McLean released his blockbuster song American Pie. It was a song that quickly rose to #1 on the American charts and stayed there for weeks. More than forty years later, it continues to play on the radio as a reminder of simpler times. McLean wrote the song in remembrance of three musicians who had died in a plane crash on February 3^rd, 1959, the same year I was born.  The musicians were Buddy Holly, Ritchie Valens, and Jiles Perry Richardson, Jr., whose show name was The Big Bopper. Thanks to the refrain of McLean’s song, the day of their death would forever become known as ‘The Day the Music Died’.

It was my wife who brought in the paper this morning, now 55 years later, while I quickly made a lunch to bring to work. The first words I heard from her mouth were: “Oh my! He died.” As I turned to her, I only could wonder who was so important that the word ‘he’ should be enough. But then I saw the huge picture on the paper’s front page and I understood. ‘He’ was Robin Williams, who in my mind ranks right up there with Red Skelton as the greatest comedic geniuses of all time. I place these two above everyone else because both could do what no one else ever could – they could somehow have an entire audience both laughing and crying at the same time.

I once had the extreme pleasure of watching Red Skelton live at a show in Reno, when I was just 12-years old, oddly enough in 1971, the same year American Pie was released. Watching the master pantomime bring his characters like Clem Kadiddlehopper to life was magical, mostly because dear old Clem, the hapless hobo, somehow had everyone laughing and crying together.  No one else ever managed to make me do that until I saw Robin Williams as Mrs. Doubtfire, and then as Patch Adams, and then as Jakob the Liar, and again and again in so many other roles that should have won him far more than the single Academy Award he was given. In my mind, for that talent, of making tears and laughter flow together, should have won him Best Actor every time.

Imagine my shock then at hearing not only that he now was dead, but that he had likely taken his own life; that he, arguably the funniest human of all time, whose wild hoots of laughter were, in themselves, enough to bring audiences to hysterics, had been battling severe, treatment-resistant depression. But then I remembered that, among Williams’ unparalleled talents was his ability to imitate others.

“I do voices,” he told the stern caseworker assigned to him in Mrs. Doubtfire, when she asked him to list his special skills. He then paraded before her an endless stream of vocal caricatures, from Porky Pig to Humphrey Bogart.  In short, he was great at pretending to be someone he wasn’t. And at the end of his life, perhaps his best imitation was pretending to be happy for so many who saw him, even fooling those closest to him over the depth of his despair.

I have long felt a special connection with Robin Williams. For one thing, he and I went to the same small college in Southern California — Claremont Men’s College — though he dropped out and ultimately enrolled at the Julliard School of the Performing Arts in New York. Had he stayed at Claremont, he would have been a senior the year I started there; I have often kidded that I was the reason he left.

Another thing that made me feel connected to him was his playing the main role in the movie Patch Adams, a true story about a physician who believed that doctors needed to be more human than professional with their patients. As a practicing doctor, I always said the same; pointing out that the word ‘humane’ itself means having or demonstrating compassion. Patch also believed in using humor with patients — that laughter is, indeed, the best medicine. In the movie, Patch the medical student repeatedly wanders into the children’s ward wearing a clown nose.  When I was a medical student, I didn’t have a clown nose. But I did have a black and white pet puppet pig I called Pomona, who I wore on my hand all through my pediatrics rotation. Even the nurses used to laugh watching me trying to hold onto charts with a puppet on one hand. I watched Patch Adams with tears in my eyes the entire time, even while laughing.

Now I find out that Williams and I have had two other things in common. One was his long-time battles with addiction. The other was his long-time struggles with depression. From my perspective, the two often go hand in hand. It was at the height of my own addiction, back in 2003, that I found myself standing on the rooftop of a 5-storey parking building at 3 o’clock one morning. My car was parked several blocks away. The only thing that kept me from jumping, ironically enough, was my fear of heights.

And so it is that I find myself sitting here in stunned disbelief at the passing of Robin Williams. My wife has repeatedly told me that my sense of humor is one of the reasons she married me. She didn’t realize, back then, the demons I had hiding behind it. Apparently, one of the greatest comedians the world has ever known has had these demons too.

And now he is gone.

To me, he will be irreplaceable.

To me, this is the day the laughter died.

But the man and the laughter he brought us should never be forgotten. What the rest of us MUST do is to take comfort in the legacy he has left us, whether we are watching one of his movies or reveling in one of the few stand-up shows we can find on YouTube...

And both laugh, and cry, as we do.

Kevin P White

www.kevinwhitebooks.com

www.thefibrofog.com

Latest Poll - Are You Having Trouble Finding a Good Fibro Specialist?

In recent years, more and more Rheumatologists (arthritis specialists) are deciding NOT to see fibro patients anymore. There are a few obvious reasons for this.

(1) There are too few Rheumatologists for the rapidly-growing population of elderly with some form of arthritis pain.

(2) It has become clear to them that they don't do much for fibro patients, especially since many specialists only see them once anyway.

(3) Research has clearly demonstrated that fibromyalgia is much more a neurological than joint or muscle disease.

(4) Recent American College of Rheumatology criteria for diagnosing fibromyalgia have done away with the tender point examination; all that's needed is for the patient to answer a few questions.

What I want to know from you is: How much trouble did you have or are you having finding a GOOD fibro specialist (e.g., one who believes you and is trying different things to help you feel better)?

So please answer my poll on my website home page. To get to my website home page and answer the poll just click HERE

Kevin White, MD, PhD, multiple award-winning researcher, author, teacher & speaker

Multiple award-winning author of Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real

Visit my website

Buy my book

See my other award winning books

What's Fibro Like... When There's a Bun in the Oven?

Fibromyalgia is the disease of a million myths, because of all the misunderstandings, half-truths and untruths that exist about it. One of these myths is that it is strictly a middle-aged to older woman’s disease. However, besides the fact that children and men get it too, more than half of women with fibromyalgia are under age 40, still in their reproductive years. This begs the question: what happens in women with fibromyalgia during pregnancy? More specifically, what happens to them, what happens to their baby, and how does pregnancy affect the treatment and course of their fibro?

Well first, let me give you the exciting results of my latest poll in which I asked the question: If you have been pregnant since your fibro started, what happened to your overall level of pain during pregnancy? 

Drum roll please...

As you can see, a grand total of TWO people answered the question. One woman said her pain improved a lot, while the other said it got a little worse. Not much help. So let me tell you what I've learned about fibro and pregnancy through my past practice as a doctor/fibro expert and my reading of the scientific literature...

How does pregnancy affect fibromyalgia symptoms? To begin with, not every pregnant woman’s experience with fibro will be the same. However, they typically experience an increase in pain, especially over the last few months of pregnancy. This is when even healthy women tend to experience more discomfort, because they are gaining weight rapidly, the baby’s growth is accelerating, and there is increased pressure on their low back, an often problematic area in fibromyalgia. On the other hand, during pregnancy, chemicals like relaxin are released in the body that, among other things, help to relax muscles, which may have some beneficial effect. All in all, however, the average woman with fibro will notice a significant increase in her pain especially over the last few months, particularly in the low back and hip area.

How does fibromyalgia affect pregnancy? This question has two parts. First, how does fibromyalgia affect the likelihood of pregnancy? Though there has been little research in this area, there is no evidence that fibro negatively affects how fertile a woman is. However, many women (and men) with fibro experience discomfort during sexual activities, which may cause them to engage in them less frequently.  Once pregnancy is achieved, fibromyalgia can affect the pregnancy itself. For example, in one study conducted in Israel, 112 pregnant women with fibro were more likely to have smaller babies, recurrent miscarriages (roughly 10% of the women), abnormal blood sugars, and excessive amniotic fluid; but they also were less likely to have a baby born prematurely, and were no more likely to require a C-section or any special procedures.

Are fibromyalgia treatments/medications dangerous for pregnancy? VERY few medications are given a nod during pregnancy, regardless of what they are for or the condition being treated. In fact, some drugs are purposefully not even tested in pregnant women, because of the potential for lawsuits. As such, there is little research to go on. Traditional wisdom, which most doctors follow, is to discontinue as many medications as possible while a patient is pregnant, and this certainly is true for fibromyalgia. Does this mean that a woman must stop ALL her fibro medication? Not necessarily. What it does mean is that she, her partner and her doctor MUST sit down and discuss the various benefits and risks of either stopping or continuing each medication she’s on.

What is the best way to treat fibromyalgia while pregnant? Fortunately, medications are not the only treatments proven effective for FM. Stretching, meditation, yoga, and deep heat ointments may help. Pool therapy and/or sitting in a hot tub may be particularly soothing, especially for those with back pain, and especially late in the pregnancy. Massage may be helpful too, as long as it is not overly aggressive. Exercise is important as well, but must be tailored to the person’s ability and endurance; once again, being in a pool may help. And rest is crucial. Even healthy pregnant women often find the need to sit or lie down to relieve pressure on their back and legs. Scheduling regular 20-30 minute breaks throughout the day can be very helpful. This may require that women in the workforce need to take a leave earlier than they intended; and they should be supported by all parties (family, doctor(s), and employer) in this health-related decision.

Does fibromyalgia have any effects on delivery? Although it might be expected that women with FM will have more pain during labor and delivery than women without, there is no evidence that outcomes are significantly different. This makes sense, given that spinal blocks that can now be given to effectively relieve the pain over the last few crucial hours. As stated earlier, fibromyalgia does not appear to result in premature deliveries or more C-sections, suggesting that women with fibro ultimately tolerate labor as well as other women.

What happens after the baby is born? It is widely believed that a woman’s fibromyalgia will continue to be worse than pre-pregnancy levels, and that has been my experience in the past with most, but not all women. Fibro sufferers typically have very disrupted sleep; and research has shown that the worse their sleep is, the more pain they have, especially in the morning. It’s no coincidence that the mother’s fibro generally doesn’t start returning to baseline until after the baby starts sleeping a bit better. It is crucial also that the woman’s mood is followed closely, since post-partum depression can be missed or misinterpreted as “just your fibro”.

What is important to consider when planning a pregnancy? First of all, once a woman has decided that pregnancy is something both she and her partner want, she needs to make sure she has the proper support in place. Having a doctor who listens to her, a therapist she can turn to, a warm pool she can use, a supportive partner, and additional friends and family members who can help too, all is crucial. Some of this support may come from her local fibromyalgia support group, where she may find women who’ve already gone through all this. Second, although breastfeeding is desirable for the child, if she needs to go back on medications to manage fibro symptoms getting out of control, she may need to choose to bottle feed the baby sooner than initially planned.

Does fibromyalgia affect postnatal mother’s health and postnatal care? Long term, there is no evidence that going through a pregnancy will make a woman’s fibro worse beyond the first 6 or so months after delivery. By then, she should have been able to resume any medications that had been controlling her symptoms, and both she and the baby are sleeping better. She will continue to require the support of her partner, other family and friends, as all mothers do.

If you have enjoyed reading this, please check out award-winning best-selling book on fibromyalgia at Amazon. It has been called a MUST-READ for anyone interested in this sadly misunderstood disease.

Kevin P White, MD, PhD

What Happens to Fibromyalgia During Pregnancy?

I've just been asked to write an article about fibromyalgia and pregnancy for the on-line magazine HealthLine. Pregnancy has been euphemistically characterized as "a bun in the oven."  But I once had a pregnant patient refer to it as more of "a gun in the oven", because she felt that her fibromyalgia was sure to "go off" at any moment, the further and further she got into pregnancy.

She was, in a word, scared. Scared that the pain would become so bad she couldn't tolerate it. Afraid that the little medication she remained on would still somehow hurt her baby. Worried that she wouldn't be able to go through labor. And terrified that she'd be absolutely useless as a mother afterwards, because of her pain.

In the end, she did as well as any woman facing pregnancy. Labor was hard, but she persevered, and was rewarded with a beautiful baby girl who she loved with all her heart the moment she laid eyes on her.  And as a mother, though the sleepless nights were hard until her daughter caught on to the night-day thing, she was used to being tired, and thought she tolerated it better than some of her girlfriends had done, as first-time mothers.

But that's one woman... one story.  I wrote my article based upon her and a few other patients I've had who I've walked through pregnancy; and based upon the small amount of research that's been done on it.  But what happened to YOUR fibromyalgia when YOU became pregnant?  I'd love to know, and be able to update my HealthLine article once enough people have had a chance to respond.

So please go to my poll and let me know. In the meantime, keep checking back and I'll let you know the date my article is coming out.

Dr. Kevin White
Five-time award winning author of Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real

THE RAVAGES OF NIGHTINGALE’S DISEASE

Have you ever heard of Nightingale’s Disease? It is a disease described in the late 1800s by Florence Nightingale, who herself suffered from it. It is a potentially-fatal, multi-systemic disease that involves almost every organ system in the body, including the central and peripheral nervous system, the autonomic nervous system that controls things like blood pressure and heart rate, the musculoskeletal system, the skin, the immune system, the heart and blood vessels, multiple endocrine glands, the gastrointestinal system, and bladder. Patients with Nightingale’s disease are two to three times as likely as others their own age to die of heart disease, as well as four times as likely to die of liver disease, and ten times as likely to die of suicide. It affects both sexes at any age. In fact, 10-20% of cases start in childhood, potentially leading to a life-time of suffering and early death.

There’s one more thing about Nightingale’s Disease you should know: I’m the only one who calls it that. Most everyone else calls it fibromyalgia, or fibrositis, or chronic pain disease, or depression, or a crock of #%&@!

Why do I now want to call it Nightingale’s Disease? First of all, I hate the name fibromyalgia for several reasons, starting with the fact that no one can bloody well spell or pronounce it — Fibro-my-lasia? Fibro-my-laxis? Fibro-myfeetgrow? Other big reasons are (1) it is totally inaccurate; (2) it totally belittles the seriousness of this condition, by focussing only on the muscle pain; and (3) too many doctors and others treat fibromyalgia like a smelly, wet sock found in a puddle under their car; they want it gone but definitely don’t want to touch it. 

Let’s start at the beginning: Why do I call the name ‘fibromyalgia’ inaccurate? The name means ‘pain in muscles and fibrous tissues’.  It is considered by many doctors, scientists and cross-eyed milkmen to be an improvement over the older name ‘fibrositis’, which meant ‘inflammation in fibrous tissues’, because research has failed to identify any such inflammation under a microscope. First of all, in a recent on-line poll, over 340 individuals suffering from the condition were asked to name their worst symptom. Guess what it was? It wasn’t pain, which only was named by 26% (that’s one in four). Look below and you’ll see what it was:

The worst symptom, reported by almost half (42%), couldn’t be named because there was more than one. In other words, there were multiple symptoms.  In another, much larger general population study published in major scientific and medical journals almost a decade ago, pain was rated as a major problem 75% of the time, but so were fatigue and sleeplessness, with mental cloudiness, headaches and a host of other symptoms right behind them.  This brings me to my second major objection to the name ‘fibromyalgia’: it belittles the condition woefully. Think back — how many of you with fibromyalgia have been told, at some point, that ‘at least it won’t kill you’? Maybe it was your doctor. Maybe it was your partner. Maybe it was that cross-eyed milkman I mentioned earlier. But in a recently published study conducted in Denmark, people with fibromyalgia were significantly more likely to die from heart disease, liver disease, and suicide. And, the last time I checked, suicide is a form of death.  “Don’t worry, son. Your mom isn’t dead. She just killed herself.”  Really?

The name also horrifically belittles the multi-systemic nature of the disease. Under a microscope, researchers have discovered that the immune cells don’t function properly in people with fibromyalgia; that high thyroid levels double to triple your chance of having it; that high prolactin levels multiply that likelihood more than twenty times; that cortisol levels are all out of whack (high when they should be low, and vice versa); that the normal night time surge in growth hormone levels is diminished or gone; that conduction of skin temperature is all goofed up; that certain brain cells are gone and brain chemicals like serotonin and Substance P aren’t produced and released properly by the cells that remain; among other things. The name fibromyalgia implies that this disorder just affects muscles and fibrous tissues like tendons and ligaments. But that is a tragic error that completely loses sight of the all-encompassing nature of this disease.

Finally, too many doctors and others already know to duck (and/or hide) when they hear any word that starts with ‘fibro’.  Or to put their shields UP!!!

So let’s go with Nightingale’s Disease. I can give you five good reasons. First, most people won’t have a clue what it is, so you can have a fresh start. 

Second, it sounds more official and (a big plus) has the name ‘disease’ in it. Too many critics get all tingly and warm inside calling it ‘a syndrome, not a disease’, as if that delegitimizes it. Of course, don’t tell the parents of a Down’s syndrome child, or anyone with Turner’s disease, or anyone treating the Syndrome of Inappropriate Anti-Diuretic Hormone (SIADH) or any one of the hundreds of genetic, chromosomally-induced disorders listed in any medical dictionary that syndromes aren’t real. 

Third, the more accurate name — chronic potentially-debilitating multi-systemic neuro-dermo-immuno-musculo-cardio-gastro-uro endocrine/neuro-endocrine dysfunction disorder (CPDMSNDIMCGUENEDD for short) — is at least 25 syllables too long. (And people think fibromyalgia is hard to spell and say.)

Fourth, Florence Nightingale had it in the 1880s, LONG before there were the so-called ‘overgenerous compensation systems’ some critics claim all fibro patients are trying to milk for easy money.  And she developed it while working in some place like India, not in some compensation-spoiled Western country like Bangladesh (which is, by the way, the country in the world where fibromyalgia is currently most common).

And fifth, because it was Florence Nightingale — the mother of modern nursing, who graduating nurses around the world say a pledge to when they graduate from nursing school, and who is honoured once every year on International Nurses Day — who had this condition we now call fibromyalgia and first recorded it. Why, by the way, is she so highly revered? Because she was a meticulous note-taker, whose records were among the very first to document the risks of spreading germs and thereby was instrumental in the development of current sterile techniques that are used by everyone from nurses to brain surgeons; who was considered a war hero for her tireless efforts during the Crimean War (talk about the world going full circle); and whose social reforms included improving healthcare for all of society, improving heathcare and advocating for better hunger relief in India, helping to abolish unfair laws against women, and expanding acceptable forms of female participation in the workforce. And among her oh-so-meticulous records was her very own diary, in which she documented the chronic widespread pain, fatigue and mental cloudiness she suffered over the last 40 or so years of her life.

So - if we believe her notes about germs, and recognize her brilliance and tireless efforts in so many areas, we don't we believe her diary? Almost certainly, she had fibromyalgia.

And that's why we should maybe ditch the name fibromyalgia and call it Nightingale's Disease instead, or perhaps even Florence Nightingale's Disease; just like amytrophic lateral sclerosis is now named Lou Gehrig’s Disease after the famous and highly-respected baseball player who died from it. 

Why not? Maybe with a different name, people will start giving fibromyalgia at least some of the credit it deserves.

Kevin White, MD, PhD, multiple award-winning researcher, author, teacher & speaker

Multiple award-winning author of

Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real

Visit my website

Buy your copy of my award-winning fibro book

See my other award winning books

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

Breaking thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real

and five other books

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