Tuesday, June 26, 2012

CFS/FM Study at Beth Isreal, New York, NY

I wanted to pass on this information to anyone in the New York metro area who is suffering from Chronic Fatigue or Fibromyalgia symptoms.  The following story aired on CBS Newsradio 880am in New York on June 19th, 2012.
 
Interview with Dr. Benjamin Natelson, Director of the Pain and Fatigue Study Center at Beth Israel in Manhattan

Dr. Benjamin Natelson is also the author of "Your Symptoms are Real" published in 2008 and a professor of neurology at Einstein. This is the website he refers to for more information about the study he's conducting:  www.painandfatigue.com

The study has been funded partly by the National Institutes of Health and sounds very promising.  I haven't read Dr. Natelson's book but plan to do so right away.  In the radio interview, he admits that over the twenty years he has been researching CFS & Fibromyalgia, one of the most important breakthroughs he and his co-researchers have made is simply the general acknowledgement of the existence of these diseases.  Although it's still hard sometimes to get a doctor to take you seriously, you can usually find one eventually that will.  I cannot imagine what it must have been like twenty years ago to have suffered so severely and had doctors tell you it was all in your head.  I don't know how I would have endured it.  I was at least lucky enough to have come down with ME/CFS & Fibromyalgia after people like Dr. Natelson had finally convinced their colleagues in the medical community that this was something to be taken seriously.

If I were still symptomatic, I would be on a plane to NYC ASAP!  I'm from Central New Jersey and my family still lives there (which is actually how I found out about this radio interview) so it would have been a no-brainer for me. However, I'm happy to remain here in (not too) sunny Southern California and be feeling as great as I have been for the last three months.  I'm still doing really well on 125mg amitriptyline and 2mg lorazepam per day.  I've been walking about eight miles per week, up and down 9.5% grade hills and on good days, have been able to maintain a 2.8mph pace up the steepest slopes.  I will never again, for one moment, take my health for granted.  As I've said countless times before...I only hope it lasts.   

(By the way, in case anyone is keeping track, this is my 99th post which means my next post will contain a coupon code for 20% off your entire order in my Etsy Shop, Catalina Inspired in celebration of my 100th post! - I can hardly believe it!)              

Thursday, June 21, 2012

Eating In Your Sleep?!


It's embarrassing to admit but I can only explain this bizarre behavior as a side-effect of my newest medication.  As I've reported, now many times, I seem to have found a medication combination that finally has freed me, if only temporarily, from the grasp of this unknown illness.  I'm still feeling better, three and a half months after starting amitriptyline.  I'm also taking lorazepam for sleep because, while the amitriptyline takes away many of my symptoms including fatigue and pain, it doesn't seem to help my sleep problems much.

I've had some very unusual side effects from this medication, the strangest of which involves an insatiable urge to eat in the middle of the night.  It seems to have gotten a little better as my body adapts but at first I didn't know what was going on.  I'd wake up in the morning with a half a peanut butter sandwich stuck to my arm, tortilla chips or Goldfish cracker crumbs everywhere in my bed and only a very vague recollection of having gotten up in the middle of the night and it was happening every single night.  I finally got smart and started leaving myself something simple and healthy to eat, like a banana, where I could easily grab it.  Then I'd wake up and find the banana on my night stand or IN my bed with only one bite taken from it. 

I could go on and on relating entertaining anecdotes of my "sleep eating" but the fact is, this reaction is rather disturbing.  As a child and young adult I talked and walked in my sleep from time to time but eating in my sleep?  No way!  I only have a very vague memory of these actions and sometimes, none at all.  I also fear the very real possibility that I'll choke on something I'm eating if I lay down with the food still in my mouth.

I've known people personally who took prescription sleep medications and did all sorts of crazy things in their sleep but I'm curious to know whether anyone else has had this happen while taking amitriptyline.  Although this baffling behavior is disturbing, I'd gladly endure it every night rather than be as sick as I was such a short time ago.