About Me

My photo
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.

Wednesday, August 14, 2013

An Interview with a Fibro Pioneer & Specialist

Recently a reader made a remark about tender points and fibromyalgia - that she was convinced that there were a couple of tender points around the ankles.  I'm not sure whether or not she was joking - as in "it sure feels like there are tender points there!" - or whether she was serious. And so I went to my so-called "anonymous source" on so many things fibro, pain, all things immunologic and rheumatic, and so forth. 

I finally decided that I'm losing a lot of information I can write about because I've kept my big source in fibro so shaded in mystery.  So, I've come up with a compromise of sorts, as well as an opportunity that my readers may well enjoy: 

  • First, give my source's qualifications
  • Ask him a few questions point blank, i.e. an interview
  • Tell you that perhaps I can talk my fibro doc into answering some of your questions. I suppose I'd have to be the judge of which questions to ask, based on how much relevancy they have to most readers and where this blog is intended to "go." (And BTW: I love the twitter remarks but they do get lost so questions are best posted here.)

And so without further ado: what are the qualifications and certifications of my source?

Well, this doc went to undergraduate school in NYC and turned down Harvard in order to enter the MD/PhD program at NYU - where the government paid HIM to try this "MudPhud" program, not sure anyone could handle it. (MudPhud, get it?  It was a derogatory term given to the super nerds by the guys who were there because of their fathers being physicians.)  His PhD is not in some dinky field like "basketweaving in Bornio" but in immunology and he had around 15 papers published before graduating.  He presented many papers in the States and once in Denmark in his student days and won several national research awards.

Internship and residencies were done at the prestigious NYU/Bellevue program and then he went on to do a fellowship in St. Louis, studying under one of the foremost lupus specialists in the world.  His wife pointed out to him that he didn't have the personality for research at an ivory tower (too much his own person to go about begging for grants) and convinced him to go into private practice instead.  There he discovered, much to his shock and dismay, that patients were coming in with strange symptoms of something he'd seen before, "fibrositis," but had pretty much put on the back burner in his fellowship days.

And so it went. He was asked to serve on the committee which established the criteria for fibromyalgia, which took three and a half years to create.  (The youngest person on that committee and in private practice to boot!)  Blah, blah, blah.  Since then he has published in many peer-reviewed journals, asked to give feedback on other rheumtologists' manuscripts/books, has had chapters published in several medical textbooks. He served on a certain pain academy for 15 years in positions on various boards.  (OK, I'm getting bored with all of this!)

He's lectured in and presented his original research in numerous American cities as well as several cities in Canada, England, France, Denmark, Australia and quite a few others.  He has patients who come to him from all over the United States, Canada and a few from Europe.

Yes, he IS board certified in Internal Medicine, Rheumatology and is a Diplomate of the American Academy of Pain Management.  He is a contributing editor to a musculo-skeletal pain journal for which he writes a regular column.

He was also elected a Fellow of the American College of Physicians (FACP) as well as a Fellow of the American College of Rheumatology (FACR).  His practice has been officially designated a pain management clinic by the state in which he practices.

(I'm exhausted.  Someone shoot me. We're not anywhere near the end of the stuff the man has accomplished!!)

So skipping right along: finally, he also does quite a bit of medico-legal work, appearing in court as an expert witness.  

NO more!  On to our question at hand!  (I do have my limits!)

Upa:  Hi, Doc!  Well, you just heard what I've written about you.  Hope you approve.  And you also know what my question for the day is.  What is it with the tender points and fibromyalgia?  Why do we who have fibromyalgia often feel as if there are more than the 18 classic tender points we see on charts?

Doc:  Fibromyalgia is, as you and as your readers know, a widespread pain condition. The patient often hurts all over so it is not unreasonable to assume that there could be many tender points in many locations.  There is a reason why the American College of Rheumatology committee chose the 18 tender points used as one of the criteria for fibromyalgia.  High power statistics were employed by the committee to determine which tender points are most COMMONLY found in fibromyalgia.  That is not to say that they are the ONLY tender points, but rather if patients have those tender points the likihood of fibromyalgia being the diagnosis is very high. 

Upa: So, if I understand you correctly, your committee must have had talks as to where the most important or prevalent tender points were located and which would be included in the final criteria?

Doc: Of course!  In doing the research for the criteria, many other tender points, other than the classic 18 tender points, were noted to be present in the patients who were the subjects of the original fibromyalgia criteria study.

Upa: Wait a minute, please!  Who were these subjects?

Doc:  Each author was asked to submit information on 10 of his patients as well as info on 10 controls.  The control group consisted of patients who did not have the diagnosis of fibromyalgia, but had other common rheumatological problems, like degenerative arthritis or gout - painful conditions, but not conditions that cause widespread pain.

Upa: Thanks!  Sorry to have interrupted you but you know me and tangents.  So, you were talking about the tender points?

Doc: Yes.  You have to understand that pain is subjective, as is pain tolerance.  Therefore, I don't think you can say definitively that a patient with 18 tender points has worse fibromyalgia than a person with 15 of the classic 18 because they may have many other tender points causing them grief but those tender points were not including in the classic 18.  Furthermore, there is a degree of error when applying the criteria which have a specificity and a sensitvity of somewhere between 80% and 90%.  This is actually very good for biological and medical research but not as good in fields such as physics and chemistry.  To put it simply, the criteria are very reliable, but not perfect. So, the diagnosis of fibromyalgia remains a clinical diagnosis. 

Upa: Despite the new criteria put forth by the 2010 committee?

Doc:  Oh, you know which buttons to push! [Upa says, "Thank goodness there's not a gun in the room!"]  And you also know that's a subject for another day!  

Upa:  Oh all right. I know.  But seriously, I do thank you for your time and expertise.  I hope we can find an opportunity to look at another aspect of fibro at a later date, though not too far into the future! 


So, my dear readers.  I hope you found this interview informative. I did!  

And as always, I hope everyone is doing their best - only better.  Ciao and paka! 

NOTE: remember to submit general questions for possible future posts.  Please understand that they can't be too specific as our source is not your personal doctor, has not examined you and all the other qualifying statements which are understood!  Thanks! 

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)