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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Sunday, December 8, 2013

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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  1. Hi Irene. How are you feeling? Thanks for another interesting post. I wish I could borrow your rheumy! I was diagnosed with growing pains in early childhood. Doctors could simply find no explanation for the pain which has not stopped.

    Thank you also for your kind words. Saturday night found me at A&E again. I had an allergic reaction to the antibiotics. I wanted to be taken to the most recent hospital l was last seen at. At least they were able to read the chest x-ray properly! Instead I was taken to the hospital I didn't want to go to, as they didn't have a clue. So sick of incompetent doctors and hospitals!

    I now have another course of the first antibiotics to take. The hospital contacted my doctor and said he needed to see me in 5 days. I talked to him and he said I should feel better after this course which should clear up any residual infection. We shall see! It's impossible to get to him at the best of times let alone now. He will refer me for a chest x-ray in January. I will also ask him about having the pneumonia vaccine.

    Thanks for making me smile. I also describe my brain as being like a sieve! I meant to ask, what does paka mean? There's also another word or is it words, you use that I can't remember now.

    Here's to a good week indeed!

    Take care, Alpa xx

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