Children & Fibromyalgia: Interview w/ a Pioneering Rheumy Continues

Today I thought I'd continue the third installment of my interview series with my pioneering rheumatologist. I would ask my readers to please see what his unique qualifications are, which I described in our first interview. (Please don't make me bore y'all with that "stuff" again but it IS quite impressive.)  All you have to do is hit this link and you're there!  But don't forget to come back!  LOL!  And please don't be insulted that I feel I need to remind you to return - I know all too well that our brains are often a sieve.  I'll try to remember to repeat the link at the end of this interview as well.  And off we go!

Fibromyalgia (FM) in children has not received as much attention as it deserves.  I knew my rheumatologist presented a lecture in Paris in 1989 regarding the diagnosis and treatment of FM in children and so I decided to ask him his thoughts on this subject.  Might I add that I was really surprised to find that since 1989, the vast majority of FM research projects have dealt with FM in adults almost exclusively?  Those which do report on fibro and children are, for the most part, "review articles," not clinical trials or clinical research.   

Furthermore, the FDA has yet to approve an FM treatment for children.  This makes it all the more pressing to talk about this subject and get these children the diagnosis and help they need.  For those who aren't steady readers of this blog, the qualifications of my rheumy can be found here (link).  He has a well-established and well-regarded general rheumatology practice and has a special interest in soft tissue conditions like FM.  In the 31 years he's been in practice, he has published numerous times regarding FM in adults and also in children (again: read the darn link!)

Upa: Before we get to the heart of the matter, thank you for taking the time to comment on some pressing issues regarding fibromyalgia.  Today, I'd like to ask you about fibromyalgia in children.

Doc: I'm happy to discuss this with you because FM in children and teens may be present and overlooked. Worse, it may be misdiagnosed.

Upa: Yes, I'm really surprised at how many people I've met on twitter, for example, who came down with fibro in their teen years.

Doc: I have treated quite a few children with FM who were thought to have other medical problems.  When the complaints are mainly pain, a child might be diagnosed as having early juvenile arthritis; if the child has problems concentrating and difficulty sleeping resulting in problems paying attention in school, that child may be diagnosed with Attention Deficit disorder (ADD).  If one misses FM in children and attributes symptoms to the wrong problems, not only will the FM go untreated, but the child will carry a label and be exposed to side effects of various medications unnecessarily.

Upa: Can you perhaps give us some examples?

Doc: Of course. I have seen children in my practice who have been treated with cortisone-type medications for presumed juvenile idiopathic arthritis.  These kids gained weight from the medication, but were no better. In a society where childhood obesity is a real problem, you don't want to use cortisone-type medications unless they are absolutely necessary.  One particular patient comes to mind.  This 10-year old girl with FM had gained 30 lbs because of the medication and the symptoms actually worsened.

Upa: And how did you treat this child?

Doc: As I'm sure you're well aware, the FDA has approved three medications for FM: Lyrica, Savella and Cymbalta.  The approval, I believe, is for adults, so any specific treatment for children with FM would probably be off label.  Many years ago, amitriptyline, a tricyclic medication approved for depression was used to treat FM.

Upa: And how did it work?

Doc: In low doses, this medication - amitriptyline - could improve sleep. It actually enriches sleep in that it preferentially allowed the patient to get more stage 4 non-REM delta wave sleep.  Thus, FM improved in that fatigue and pain were lessened.

Upa: Did you use amitrypteline to treat the child patient?

Doc: No, I used cyclobenzaprine, which is approved by the FDA for muscle relaxation but is chemically almost identical to amitriptyline.  Not only does cyclobenzaprine help to improve sleep, but it also can relax the muscles directly.  One of the common side effects of cyclobenzaprine is sedation (sleep). Many patients can't take it during the day. However, it can be an ideal medication for FM in that this side effect is actually desirable.

Upa:  And how was this desirable when the child needs to go to school?

Doc: Obviously, the child would only take the medication at bedtime.

Upa: And was there "hang over"?

Doc: Not in this child.  However, in some children that can be a problem so the dose of the medication has to be adjusted.  Some children need as little as 5 mg at bedtime whereas others needed as much as 20 mg. There is really no way to predict based on the child's size, but a good starting dose would be 5 mg and then see how the child responds.

Upa: How long does it take?

Doc: I have seen good responses in a few days.  Usually, the child will be able to sleep better, not waking up in pain and actually enjoy physical activity during the day.  The "growing pains" tend to disappear and the child does not "act out" as much, or have as many problems concentrating in school.

Upa: Do you use any other medications in children?

Doc: Yes, if cyclobenzaprine doesn't work I might use another tricyclic medication such as doxepin or amitriptyline.  I do NOT use Cymbalta or Savella because of their potential side effects, especially suicidal ideation or suicidal actions.  The best advice I could give you is to be extremely careful, follow the child closely and use what works.

Upa: How do parents get help for their child?

Doc: One must have a high index of suspicion that the problem might be FM and speak to the child's doctor about it.  We know that FM tends to affect women of child-bearing years more than any other group.  But, FM can show up in early childhood all the way up to the "golden years" and can affect both sexes.  If the parents notice that their child is not improving, then they need to speak to their doctor about FM.

Upa: Thank you very much for your time.  I'd like to interview you again at a later date, especially about children with fibromyalgia and exercise. (Can you hear the roar out there?  Quite the controversial topic!)

Doc: I'm looking forward to it.

                                            **********************************

I hope you're enjoying this interview series.  I feel most fortunate that I have access to this rheumy.  And as for part of his qualifications, please hit this link.  It's really worth your while to go there.  And, of course, you may want to read the second interview he granted this blog (here).  I truly hope that there are those out there who find this interview of help.  

As alway, I hope everyone's doing their level best, only better.  Here's to a good week. Ciao and paka! 


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The mystery of why can't the bookworm read?

The boys loved putting on the "bobbies" hats when we had our own little mystery: who had robbed our flat while we were all sightseeing?

Good golly, great balls of fire!  I am NOT kidding when I say that I'm not sure how much longer I can "accept" this new Irene who doesn't read, who's not capable of reading because of problems with concentration.  I'm very much back in the POSITION of being able to read again, given that my daughter's health is, for the most part, on the upswing, and that I'm back in bed.  In fact, given how much I am recovering from the abuses my body and CFIDS/ME/fibro-addled brain experienced in the last two years, that is, between all the health crises in the family, I should be able to GLADLY escape to my book world, and certainly would have any other time in my life.  Heck, normally at any other moment in my life, I'm sure a crazy blood-thirsty gang of Viking would have had problems ripping a book away from me.  

This is a totally new me I don't recognize.  I don't like it at all and, frankly, I'm beginning to fear it.  Heavens, no matter how ill I've ever been, I've always been able to read.  Granted, I did get to the point in my deteriorating health where I was strict with myself and forced myself to read at all times, for fear of losing the ability to do so. And I reluctantly admit to reading some of the most awful junk on my really bad days (no titles from me on this count - I still have a bit of pride left!) when I had such extreme concentration problems.  Yes siree, I've read awful, flinching stuff when all is said and done, all in the name of keeping my brain from completely atrophying from this DD.

Forget the memory problems (pun: groan!).  I signed the terms to the surrender of that battle a long time ago and made extremely difficult concessions to the agreement, that of having to read a book in a day or in a single "sitting."

"Sitting"?  And how wrong is THAT word since I can basically only read lying down and only on my right side at that, in bed, no other way as long as I can remember?  Ha!  Given that I remember HOW much (?), I'm not sure how convincing that statement is.  But rest assured, it was my middle child, who's always had a knack for noticing the oddest things, who pointed it out to me back when he was about eight years old and he was absolutely right.  And I DO remember my mom being upset with me even when I was growing up, that I wasn't able to read from a sitting position.  I'm a bit of an odd duck, aren't I?

There's yet another reason that I'm afraid and upset about this inability to read.  Just as I've always used my "Russian-ness" as an identity that made me different from others as I was growing up and allowed me, I strongly feel, to avoid an "identity crisis" in college when EVERYONE was going through their "identity crises,"  (it WAS the 70's!) so, too, has "bookworm" been an integral part of my identity.

I've lost so much to this stinking disease, this CFIDS/ME and fibromyalgia, not to mention the migraines, the pain, the God-awful fatigue that makes you want to flow down the drain with the water as the bathtub empties.  I'm no longer able to garden like I love to, cook and bake like I yearn to, on a regular basis.  The couple of times I can do so a year, if I'm lucky, are an exception to the rule.  I long ago gave up on photography (or picture-taking!), swimming, visiting with friends.  I've not been to the movies since 1997 when "Titanic" swept the Oscar's, this a person as a member of a family that would often go to see three movies right in a row on a single Saturday or Sunday.  I no longer go to church. I cannot clean, iron...tasks I used to love to do because of the sense of accomplishment I always felt afterwards, if for nothing else.

As I torture myself trying to analyze what the heck is happening to me, I realize that in the last twenty years I've become more and more drawn to mysteries, and series at that, and have wondered why?  It took me a while to realize that the mystery aspect was enticing and appealing because it sharpened my deductive reasoning skills - a fancy way to say that I needed to think like a detective as I've tried to figure out my biggest mystery: what the heck was going on with, to and in my body, as well as my brain?

And why in the world the love of series?  Well, because it was so much easier to read a novel where I knew all the players and their histories and didn't have to kill off precious brain cells in trying to learn new people and places and their back stories.  There's not much I dislike more than beginning a book because it's just so hard to figure out what the heck is going on.  Lordy, even the font that changes from book to book throws me off my game.  All of this is so weird since that means that as I was reading 400 plus books a year in the last few years  (I kept a journal of titles, that's how I know!) that's an awful lot of unpleasant feelings at least once every single day. Was/am I a masochist? Coupled with how much time I would spend each day wandering the house trying to find a book to read, was in the "mood" to read (code word alert!), and given how much I was reading, I marvel at how quickly I must have been flying through those books!  And it's no wonder hubby had such mixed feelings about hitting up our libraries, hauling books home by the bagfuls, hoping he'd hit a home run with at least a couple of those books every few days.

A funny memory of my kids' childhoods.  At night when they would finally be ready for bed, once I got to the point where I couldn't always put them to bed anymore but hubby had to as often as not, the kids would run to my bed, attack and jump all over me vying for my attention, hyped up as usual from just being three rambunctious children, and demand to know what I was reading and how far along I was into the book. In the morning, when they would see that I'd had yet another sleepless night, they'd again invade my bed and want to know what I was NOW reading. Their biggest delight: if I had finished the book I was reading when they went to sleep, read another book as they slept and was into book #3 when they woke up.  OK, I never said my kids were NORMAL!

I'm trying every mind game I can think of and I still can't get into reading, this to a person who would walk down stairs reading, wash my hands in the sink while reading, brush my teeth while reading...the list goes on and on. In fact, I often tricked myself into doing a chore my body couldn't handle by reading and doing that chore at the same time.  I'm not saying I remembered anything I read while doing these things.  It was a bit like a roller coaster ride, fun while doing it but almost immediately forgotten.  And it got the job done.

Just as a smell can trigger the most deep-seeded memory and bring it it the foreground, I remember where I was or what my interests in life were back then, and I recall what crisis, happiness, indeed every twist and turn of our family's history at any given moment, all from just seeing a book cover.  Books are my history.

And the joke and anecdotes surrounding my reading are many. We were on our first trip to London, the entire family! The oldest was ten (trip first described in the post on 2/26).  We stopped at the bookstore at the airport (oh how I love to look at walls and tables at a bookstore and laugh when I see that I've read at least 75% of the books I see).  The gentleman remarked on how wonderful it was to see my kids zeroing in with excitement towards the books instead of the toys sold there too.

Before you get to "Oh, how sick can she be if she's flying to London, for heaven's sake!"  Wait!  

I held up a book that had caught my interest, but feeling very guilty about the bloody fortune we were spending on this vacation, plus so exhausted from the packing and planning, I was definitely not in peak shape even for my low standards.  I help up a book and asked the seller, "does this come in paperback?"  The man looked at hubby and hubby looked at clerk and I had no answer to my seemingly simple question.  I repeated, holding the book up even higher, a bit annoyed since my upper body strength has never been the greatest, I was exhausted, I was sure my makeup was rolling to my neck down from my face, I was sweating, I was becoming nauseated, my hair was getting wet from the exhaustion and all I wanted was an answer to a very easy question.  Griding my teeth behind what I'm sure was a very fake smile, I repeated, "DOES THIS BOOK COME IN PAPERBACK," a bit more slowly than called for.

The looks going back and forth were quickly getting on my nerves when hubby gingerly replied, "Uh, Irene...you ARE holding the book in paperback."

My brains was so slow that it took me a full minute of staring at the darn thing to finally understand what he meant.

Some days you just can't win.

In the meanwhile, I'll continue reading samples of books from my Kindle.  Something has to finally kick in. 

Reading, like I said, is me.

Visiting Kensington Palace on  Easter Monday, we discovered that Princess Diana had set up an  Easter Egg hunt for little children coming through that day, as well as a place in the basement where they could color and make all sorts of Easter arts and crafts projects.  What a lady!  

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Laughing from my sickbed about my profile....

One  bad day in the mid-80's: hubby's idea of lightening the mood, a gorilla-gram!  I love that I have a bracelet on even when sick.

If I had any idea whatsoever as to what the profile questions were about, I'd 
answer them, no problem!   I really don't mean to sound mysterious.

I'm a wife, a mom and, I hope, a good friend.  My "long-suffering" hubby and I 
have known each other for 37 years, meeting on, of all things, a blind date and 
falling in love at, just about, first sight.  My first reaction upon seeing the 
tall guy in front of me?  "S*^t!  THIS is what I've been waiting for all my 
life?" and proceeding to answer no more than "yes" and "no" for the entire 
evening.  We've been married for 36 years and have three fantastic kids, who 
love their mom and dad's story of how they met and tell everyone about it.  My 
best friend of all time and I have been BFF's for an unbelievable 41 years.  

For a long time I had no idea what the heck was "wrong" with me.  We kept making 
excuses for my seemingly sudden fatigue and brain fog and a host of other 
problems that were added to my "what's wrong with me?" list as the years went 
by.  Eventually, about fifteen years later, I was diagnosed with Chronic Fatigue 
Immune Dysfunction Syndrome (CFIDS) from a severe flu I got in grad school in 
1975, commonly known as Chronic Fatigue Syndrome (CFS), a term my fellow 
sufferers and I detest.  If anything, I prefer the British name for it, Myalgic 
Encephalopathy (ME).  The British ME shows that in England, at least, as well as 
Australia, they take this illness more seriously than we Americans do.

Over the years as I've become more and more sick I've worked hard on trying new 
tricks and ways of surviving this illness.  I've been extremely lucky in that my 
hubby and kids have been so supportive of me over the years - and fierce in 
their own fights to help make my life a bit easier to survive.  

But most of all, the thing that has helped our family stay together and fight 
this beast is our gift of laughter.  And it truly IS a gift.  We've had our 
"challenging" periods and were it not for laughter I just know we would not have 
survived this DD ("dreaded disease, "darn disease," etc., you get the drift).  

I have no idea if anyone is actually reading this blog.  It often feels a bit 
like when I catch myself talking to myself - a genetic thing, I tell myself, 
because I do remember my grandmother doing so!  But I certainly hope I develop a bit 
of a following because over these past 37 years I've been able to come up with 
various coping techniques and tips that may help those with CFIDS, Fibromyalgia, 
insomnia, and, indeed, anyone who suffers from chronic illness, be they totally 
bedridden, as basically I am now, or still struggling to hold down a job, or at 
least some semblance of a social life.  

So glad if you've been able to drop in and spend a bit of your time with me.  
Please leave comments if you're at all inclined to do so and/or subscribe.  I 
will answer any questions you may pose and will enjoy hearing from just about 
anyone...it'll be nice if and when I'm no longer talking to myself.