Tuesday, 11 March 2014

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

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
and five other books
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Thursday, 19 December 2013

T’was the Pain before Christmas (An ode to those with fibromyalgia)

T’was the night before Christmas, and all through my body
Not a thing isn’t hurting. How I need a hot toddy!
The stockings I’d put on my feet with such care…
They now chafe my skin, I feel so raw and rare.

I’ve spent almost all of this day in my bed
With this merciless migraine pounding my head.
I just feel so tired, all energy sapped.
How I wish I could sleep — please — just a half hour nap!

When down in my gut, I can hear such a clatter:
I’m just not quite sure — Is it bowels? Is it bladder?
Away to the bathroom, I crawl like a slug
And sigh when I spy in the mirror… my mug.

My face seems as white as the new fallen snow.
And so are my hands — I’ve Raynaud’s, you know.
When what to my wandering eyes should appear
But a toy that my grandchild has somehow left here.

She’s a beautiful grandchild — so lively and quick.
Right now she’ll be dreaming of good ol’ Saint Nick.
The rest of my family, well, they’ll do the same.
If only I could remember their names.

There’s Stacey and Thomas and… Sarah, I’m thinking.
I hate when my mind’s like I’ve spent all day drinking.
Whatever their names or size, big or small,
Come Christmas morning, they’ll all come to call.

They know not to come too much before noon.
They know I’ll be useless if they come too soon.
But then in their Honda they’ll park in my drive.
And suddenly sprout like a busy beehive.

They’ll rush to my door bearing goodies and such.
Mostly for them though… I can’t eat too much.
They know not to hug me too hard, lest I scream
And spend all day smelling like a deep-heating cream.

My grandchild will be at the centre of things.
But that is the magic that each Christmas brings.
The day will seem long for me; yes, that is so.
But Christmas comes just once a year, don’t you know.

And if I stay careful, and limit myself
To no more than what I can handle, or else,
I CAN enjoy Christmas, and all of the cheer
And then be so thankful it’s just once a year.

So if you are hurting like me, might I say
I hope you too tolerate this Christmas Day
And more than just that, I hope that you find
Some joy and some love and some true peace of mind.

And though we’re in pain, to start things off right
I say Merry Christmas... and to all a good night!

Copyright © Dec. 18, 2013, Kevin P White, MD, PhD
Kevin P White, MD, PhD
5-Time Award Winning Author of

Thursday, 3 October 2013

Cranial Electrical Stimulation (CES) for Fibromyalgia

I recently was contacted by Linda Horncastle, an Occupational Therapist who lives and works in the United Kingdom. She wanted to know my opinions regarding the use of cranial electrical stimulation (CES) for the treatment of fibromyalgia. My first response was wise and confident: I told her I hadn't even heard of it. But then, not wanting to come across as more of an idiot than I already seemed, I told her I would look into it and get back to her.So here I am, getting back to her (and you) regarding my thoughts on CES, having done some reading about it.

To begin with, cranial electrical stimulation is just what it sounds like: it is low-level pulsed electrical stimulation of the brain, typically administered via little clips attached to the ears (see below).
  
The treatment has been approved by the US Food and Drug Administration (FDA) for the treatment of depression, anxiety and insomnia. Usually, CES is administered for between 20 minutes and one hour per treatment; and some patients receive several treatments per week over weeks. 

Recently, several have been using it also for the treatment of pain. The question that Ms. Horncastle had for me was: do I believe it works? To answer her, I have done a search of the medical scientific literature to see what I might find. I hadn't expected to find a whole lot; but I was somewhat surprised, in that at least two well-designed, randomized, sham-controlled, double-blinded studies have been conducted and reported.  By randomized, sham controlled and double-blinded, what I mean is that a number of patients with fibromyalgia were randomly assigned either to receive real treatment (real CES) or a mock treatment, in that ear clips were applied, but didn't administer any electrical currents.  Since patients don't actually feel the real currents (it isn't like sticking your finger in a light socket; there is no shock), the patients in these two studies truly did not know if they were receiving the real CES or fake CES.  

What happened? Interestingly, both studies demonstrated a greater reduction in pain with real CES treatment than with the fake treatment, but the reduction in pain was small. In one study, the reduction in pain was just over 10%; while in the other study, there was a 27% reduction in pain and a 28% reduction in tender point scores.  These results are not earth-shattering; but they are reductions nonetheless.  In the most recent study, functional MRI scans of the brain were done that showed that the CES treatment resulted in significant reductions in the activation of the pain-regulating center of the brain, suggesting that this was a true pain reduction, and not merely a reduction in depression or anxiety related to pain.

CES may have more benefit for other manifestations of fibromyalgia than pain, however. In the sham-controlled study published in 2001, for example, the percentage of patients who rated their sleep as poor dropped from 60% to 5% in those who received active CES, while the sleep of patients who received the sham treatment actually worsened. Those receiving real CES also noticed a significant improvement in overall quality of life. Interestingly, when patients who received either the sham treatment were later given real CES, many responded.

How good were these studies?  From a scientist's point of view, two positive studies are not definitive. However both studies noted above were well-designed, in that they were randomized, sham-controlled and double-blinded. What this means is that neither patients nor doctors could falsely bias the results. In this regard, the studies were good.  However, one study only involved three weeks of treatment and the other eight weeks.

More recently, a Cochrane database review has been published  assessing the effects of CES and other forms of non-invasive brain stimulation that include repetitive transcranial magnetic stimulation (rTMS), cranial electrotherapy stimulation (CES), and transcranial direct current stimulation (tDCS). Overall, a 15% reduction in pain was noted between active and sham treatments over 33 studies.

So... to answer Ms. Horncastle:   I think that there is certainly reason to believe that CES can be helpful in some fibromyalgia patients, but the effects regarding pain reduction will usually be small, in the order of 10 to 30%.  However, greater improvements might be observed in sleep and other symptoms, resulting in an overall improvement in quality of life.

Are CES and other forms of non-invasive brain stimulation safe?  That question is harder to answer. The FDA considers them so. What might happen twenty and thirty years down the line, no one can be sure. For years, scientists have been trying to determine if society's now rampant use of cell phones and other hand-held electrical devices will result in increased rates of brain cancer. So far, no significant increases have been identified. But again, what will happen in 20 or 30 years?  Time will tell.  I suggest, however, that the risk of CES devices used in the short-term will likely be very low.  Note also that we don't know the long-term risks of many other things, including some of the newer drugs now being used for fibro.

The bottom line:  Would I recommend that CES be used in a fibro patient?  I believe that, if you have a therapist who is knowledgeable and judicious in its use, and you have symptoms that are interfering significantly with your quality of life, CES would be reasonable to try. It might especially help your sleep. And I think life always seems much more tolerable after a good night's sleep.

zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

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

Monday, 30 September 2013

Novel about Autism Wins International Book Award

Just thought I'd let everyone know that another one of my novels has won an international book award. The book is called Puck, and I am really excited about it. It is the story of an autistic boy who learns to play hockey.

Told from the perspective of the boy's father, the book describes the ups and downs the young family has, from the first realization that something is wrong, to the day autism is diagnosed, to the many struggles and successes that follow.

It is called 'Puck' because that is the very first word the boy says, when he is eight years old... and that one word changes everything.

Readers Favorite Review wrote:

“Puck” by Kevin White is the beautiful, heart-warming and heart-wrenching story of Kathy and Jason and their autistic young son Luke. It is a great story that Kevin White wrote with feeling, understanding and a lot of love. I felt all of the pain and joy along with Jason and Kathy. I cheered for Luke and became emotionally attached to him. The final chapters tore at my heart and made me proud too at the same time. I was really sad to leave my new friends behind when I got to the last page. Kevin White has written a winner that can easily hold its own as the top best seller for many weeks. It would make a fantastic movie as well. My hope is that there is a follow-up so that we can see where life takes Luke next. Kevin White is a five star writer who has left me wanting more.

I sincerely hope that some of my blog fans will go to amazon and pick it up as an eBook (just 99 cents), read it, and then comment on it.  If you'd prefer a printed copy, the book is in its final editing stage and should be available through amazon as a printed book within a month. Proceeds from all my books go to a variety of charities. And, by the way, October is International Autism Month.

Thanks



 


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