About Me

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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.

Thursday, July 25, 2013

Factors in Developing CFIDS/CFS/ME and Fibro (Part 1)

Plotting how to get through the slates to get into the water: and I did figure it out! 

Whether or not fibromyalgia can be brought about by head trauma is somewhat of a bone of contention, especially since one of the doctors who was on the committee that set up the criteria for fibro back in 1990 has since changed his mind about head trauma and fibro.  Unlike many of his colleagues, among them the very physicians who also served on that two-years-long committee of establishing fibromyalgia criteria, this doctor now claims that fibromyalgia is never caused by head trauma.  But it gets worse...
Incidentally, If you're interesting in what I mean by the criteria, and wonder who is that doctor  - well, he's an academic who sees almost no patients but sits in an ivory tower and makes proclamations. Worse, he practically decides, on his own, what research is going to be funded with the miniscule number of dollars allotted for fibro research.  You can read more on this here ("Fibro is no Accident"), here (Wolfe) and here (Fibro 101) as well as probably in another few posts if you put "head trauma" into the search engine on the right. Furthermore, I can tell you that physicians are, for the most part, afraid of this person because they know that going against this doctor can be dangerous, if not fatal, to their careers.  

An insider secret: the Vancouver concensus meeting in 1994 was far from a group of doctors reaching an agreement or consenus regarding the relationship between trauma and fibromyalgia.  Many bad feelings and rivalries came about as a result of that meeting.  I'd never seen anything like that and I, personally, consider that fibromyalgia research took a huge hit because of this physician who managed to alienate his colleagues and caused, again, in my own opinion, huge setbacks in the field of fibro.  Period.  I'm not alone in thinking this.

But be that as it may, I'm actually going to write about something different.  I just wanted to set the stage, so to speak, about the role of head trauma - and a bit more, of course. You know how I am by now! (I can see you nodding your heads!)

My doctors have always wondered what role head injury has played in my developing fibro and have also wondered if I was genetically predisposed towards fibro.  I've had at the very least 7-9 serious head injuries. Therefore, wondering if head trauma is a significant factor in all of this mess is not a far-fetched question. Here are just a few examples:

  • I fell off the monkey bars at age 4 onto a cement playground hitting the top of my head first. (Ouch!)
  • In 6th grade, the girls were playing some sort of kickball game against the boys. Being very athletic, I was the girls' choice for scoring a lot.  When it was my turn to kick that ball I wanted to do it right and kicked that sucker as hard as I could, missing the ball.  Unfortunately, my leg just kept going and I flipped over 360 degrees and landed on the cement playground and, you guessed it, the top of my head.  
  • My brother once took a long branch and stuck it into the spokes of my front tire as I was riding my bike.  The bike and I flipped, with me, yet again, landing on the top of my head.
  • When I was 12 years old, I decided to dive off a fishing pier. I wanted to show off my newly-learned shallow dive and in order for my friends to see it, I didn't go far down the pier, but stayed rather close to the front by the shore.  Fishermen at the end of the pier made wild gestures and tried to yell things out to me, which I couldn't hear, trying to get me to move. I thought they meant that it would be safer to be closer to the shore.  Well, I dove alright: right into less than 6 inches of water. My head was embedded in the sand, my behind jetted up toward the sky.  My friends all came running to get me out of the water.  Since this was a bay and not a beach, there were no life-guards.  As young as we were, none of us suspected that I should have been only minimally moved because of possible neck injury.  I was unconscious for a bit but no one thought to call anyone because I came to - after all, none of us had ever heard of concussions.  I ended up with one chipped tooth and a very sore neck.  I was extremely lucky, to say the least.  (And of course we didn't tell any of our parents! We didn't want to endanger further trips out to the bay.  We had priorities!)

Are you seeing a pattern here?  And these are just four incidents!  And may I say, is there any doubt as to why I always have on a nice pair of undies?  With me, you never know who will end up seeing them!

Though we (my doctors and I) had established how and why I had CFIDS/CFS/ME and thought we understood how I got the fibro part - as a result of the CFS - we always had to throw into the mix the question, what part did brain injury play in the whole picture, and was there, in fact, a genetic component at work as well?

Ahhh... but this will have to be continued tomorrow since it's become a rather long narrative.  Fear not: we have some fun things coming up.  Clues and teasers: a long-lost relative in the former Soviet Union and CFS/fibro - so I hope you don't forget to join me tomorrow!

In the meanwhile, I hope everyone is doing their very best, only better!  Ciao and paka! 

To be continued...

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  1. Geez Irene your poor head Ouch xx Great post as always.

    1. LOL, Sophie. I think it'd be accurate to say I was a bit of a daring and relentless tomboy! And thanks for reading and the compliment. Hope Lewis is doing better and that you have a great family weekend. Hugs! xx

  2. Cannot wait for continuation, Bond girl! I am enchanted by your writing!

    1. Thanks! And love the "enchanted" and "Bond girl"!!! What a boost to the ego! LOL! xx

  3. Has it been suggested to any of you, to have Botox injections on your back...as part of a regular treatment...every six to eight weeks for fibromyalgia and/or myofascial pain...upwards of fifty injections in one visit? A surgeon/anesthesiologist work together to eliminate fibro. This is done in their office, and afterwards I need to take a hotel room so that I can get some rest. The next day, I get in the car and drive upwards of six hours in order to return home. It is not a cure. It is given in the hopes of eliminating the need of medications.

    1. Sounds like an awful lot of work and I think it would just about kill me, especially since I'm doing pretty well in the pain management aspect of fibro. However, whatever works for anyone shouldn't be put down at all. I always say there is no cookie cutter formula that works here and that we are all different. xx