Fibromyalgia & ME/CFS (Chronic Fatigue Syndrome) Information Site

I recently updated my Fibromyalgia & ME/CFS Awareness website.  I spent a long time researching these subjects while I suffered with pain and profound fatigue and weakness.  I'm currently in remission thanks to 75mg of Amitripylene and .75mg of Lorazepam per day.  I only hope it lasts.

Please visit my website for information about Fibromyalgia & ME/CFS (Chronic Fatigue Syndrome) causes, research, clinical studies, symptomology and more. 

Wishing all who are suffering, a reprieve from these horrible diseases.  If there are any suggestions about other things I should include on my page, please feel free to comment here.

Statute of Limitations on Medical Bills

A couple weeks ago I received three envelopes in my mailbox from a collection agency. This fact itself was not shocking as invoices of mine have been sent to medical collections several times since I became ill. The shock came when I realized they were for Dr. appointments I'd had before I even became ill and while pregnant with my daughter.  Due to my low income at the time, I'd qualified for Medi-Cal which is medical coverage that's subsidised by the state of California. Many low income women in California qualify for this program (which incidentally, ends one month after your child is born). It's a great program but, like so many others, has it's definite flaws.  The invoices totaled over three thousand dollars for services that took place in 2009, almost exactly three years ago.

At first I thought, "how can they be demanding money for something that occurred so long ago"? I did some research and found that there is a statute of limitations on the collection of medical bills. It varies from state to state but typically falls into the three to four year range. California has a four year statute of limitations on the collection of medical bills. When I discovered this, I felt beaten for sure. I dusted off my pre- Fibromyalgia/ME/CFS medical files which are in with the rest of my life's paperwork. When I became ill I had to start storing all of my medical records that delt with these new illnesses in their own box since they took up about as much space as all of the other paperwork combined. Though I'm normally pretty good about filing important documents, I'd apparently cleaned out my files from my pregnancy because I couldn't find the invoices in question.  So silly of me to think that since the invoices had been paid three years ago, it was a done deal.  Lesson learned...don't throw away invoices even if they've been paid in full and the accounts have supposedly been closed.

My story does have a happy ending through, I think.  I collected all of the information I had and made appointments with the advocate I'd worked with during my pregnancy and a representative from the billing department.  I also contacted my bank, Medi-Cal and the billing service my doctor's office uses and asked for copies of records to be sent.  I finally convinced the billing department to drop the case - I think.  The last time I spoke with someone there, I was told they had recommended the invoices be "written off".  I haven't heard anything but I wouldn't be the least bit surprised if next month I get the same invoices from the collection agency.  It seems nothing ever gets done correctly the first time.  That's been my experience anyway.

Yoga for ME/CFS & Fibromyalgia

While I was enduring the worst of my ME/CFS (Chronic Fatigue Syndrome) and Fibromyalgia, I could barely lift my arms to get something off a shelf, never-mind, even contemplate exercise.  I listened to many people attempt to enlighten me with tales of a friend, sister or cousin who had cured themselves of Fibromyalgia through exercise, by pushing through the pain. 

The emotional torment comments like this caused can hardly be described and I'm sure if you suffer from these diseases as well, you've experience this phenomenon countless times.  I did, on occasion, lash out after hearing this well-meaning advice by trying to explain that I was practically unable to walk up a flight of stairs, and that pain had absolutely nothing to do with it.  Desperately, I tried to convey the debilitating shortness of breath, shaky muscles and all-over weakness that consumed me, but I quickly realized that if the person I was taking my frustration out on hadn't experienced this sickness, they simply wouldn't understand.  I learned to put up an emotional wall, attempt to let the comments bounce off it and dredge the depths of my sickened soul for a reply. 

"Wow, that's really great that your [friend, sister, cousin, etc] was able to get better." I found myself saying through clenched teeth. 

I've always had, what I admit at times, has been a stubborn need to feel and appear "strong".  Self-sufficiency was something I had prided myself on until the unwelcomed arrival of these mysterious diseases in my life.  I'd recently become sober, exercised regularly and ate fairly well.  I didn't smoke, eat meat or even drink caffeinated beverages.  I couldn't understand how my body, that I took pretty good care of, was turning on me.

My diagnosis of Fibromyalgia was augmented with ME/CFS (Chronic Fatigue Syndrome) in December of 2011.  I began to realize that it was probably the ME/CFS piece of my illness that caused the sometimes paralyzing exhaustion and prevented me from being able to exercise.  Any attempts I made at exercise were rewarded by even more profound weakness that lasted days after my foolhardy attempts to be normal. 

I'd read several blogs and articles about Yoga and how it had helped many through the pain of Fibromyalgia.  I'd practiced Yoga sporadically throughout my adult life so I was familiar with the basics.  On one of my grueling trips to the mainland, I somehow managed to shuffle my way to the exercise equipment department at Target and picked up a DVD, Yoga for Beginners, by Rodney Yee.  I looked at the image on the cover and laughed at the thought of myself practicing even the simplest of poses.  A few days later, I popped the DVD in the player, tried the first pose and fell to the floor exhausted.  The DVD went back into the box where it stayed for another year and a half. 

Floor Yoga Stretches I do that Help My  Fibromyalgia & Chronic Fatigue Syndrome Symptoms

For a time after this experience, I gave up any attempts at exercise and stayed in my bed or on my couch where, if I rested and took my naps every day, I could muster enough strength to do some of the things I needed to do.  Any diversion from this routine left me bed-bound for days or even weeks. 


I did, later, discover a way that Yoga could be of help to me.  During the holidays last year, I began experiencing unusually strong back pain.  The only thing that seemed to help was to lay on the floor and stretch it out.  It was then that I remembered the Yoga stretches that are typically done at the end of a Yoga workout.  Every morning I sat on the floor and gently stretched my muscles, holding the poses for as long as it felt comfortable.  I actually began to notice a considerable reduction of back pain.  Of course, it should go without saying that you should always check with your doctor (of which I am not one) before starting any new exercise regimen, especially if you have Fibromyalgia and/or ME/CFS (Chronic Fatigue Syndrome).


A few of the stretches I do are pictured above but any book with yoga poses or a Yoga DVD should have instructions on how to properly and safely perform the poses.  My philosophy was to do the stretches I felt comfortable with and skip all the rest.  The most important factor when it comes to exercising with ME/CFS and/ or Fibromyalgia is to NOT push yourself.  The moment you begin pushing yourself beyond what is comfortable will be the moment you set yourself back in your recovery.  I don't care what ANYONE says about other people having "pushed through the pain".  If you have any issues with chronic fatigue and exhaustion, this strategy simply WON'T work.

Insidentally, the following post in Psychology Today on April 24, 2012, had the same effect on me (and countless others) as the stories well-meaning aquantences tell of others "being cured" of Fibromyalgia.  I'm only passing this insulting article on so you can add your own comments.  I already wrote mine as have many other sufferers.

http://www.psychologytoday.com/blog/owning-pink/201204/the-secret-healing-chronic-fatigue-syndrome

Autoimmune Syndrome and Pesticides in our Food Supply

Pesticides Being Sprayed on Food Crops (image source: nmorganics.net)



I recently read an article in "Natural Awakenings" the Central New Jersey version, June 2012 issue, that I wanted to share.  I've written about this subject before but felt it was time for a re-visit.

The title of the article is "Is Your Body Allergic to Itself? - The Plight of Autoimmune Syndrome" and is written by Dr. Nikki Conte (unfortunately the article is available only in print or PDF format which is where the above link will take you).

Dr. Conte's article focuses on, what I agree is, the real cause (or one of the main causes) of autoimmune diseases such as ME/CFS (Chronic Fatigue Syndrome) and Fibromyalgia.  I don't understand how the presence of staggering amounts of chemicals, including pesticides and synthetic bovine growth hormone, injested by the average American every day in their food can be all but disregarded by our government, medical establishment and the general public.  Our food supply has become inexcusably poisoned and the presence of these chemicals is routine and completely legal. 

image source:  http://www.lowdensitylifestyle.com/obesity-can-be-caused-by-chemicals-in-foods/

Pesticides are created to kill insects, fungus or any other living thing that may endanger the particular crop they are applied to.  Although I realize human beings are quite a bit larger, therefore less vulnerable to the fatal effects of these chemicals, this daily ingestion must have some cumulative effect.  I think it's naive to think that chemicals who's sole purpose is to kill, will have no negative impact on human beings as a whole.  I've often thought (and I know I'm not alone) that these chemicals must have some part in the increase of autism cases and many other diseases, such as obesity, that the medical and scientific communities seem baffled by. (For more information about obesity and pesticides click on the source link under the above image) 

Our immune systems simply don't know how to react to the onslaught of these relatively new agents and in some people, have become so confused that they wage a full autoimmune attack on benign substances in our food or environment that have been in existence for many generations, or in the case of wheat, since human beings began an agrarian existence around ten thousand years ago.

As the mother of a two-and-a-half year old, this whole notion scares the heck out of me.  I buy as many organic foods as I can reasonably afford and my daughter has yet to taste beef, chicken, pork or any other land animal, though she has had fish on occasion.  I feel desperate to protect her from pesticides, synthetic bovine growth hormone and chemical preservatives but these substances are so prevalent in our food supply that I wonder if this is even remotely possible.

Cold Viruses & ME/CFS & Fibromyalgia

Before delving into the oh, so, uplifting subjects of illness, ME/CFS and Fibromyalgia, I just have to celebrate for a moment, this,...

MY 100TH POST IN "FIBROMYALGIA???"!!

I can hardly believe it!  I started writing this blog on Jan 13, 2011 in the midst of feeling so sick and recently having been diagnosed with Fibromyalgia (the ME/CFS diagnosis came later).  I'm so thankful for the progress that I've made since then and I hope that some of my experiences were helpful to others who face a similar plight.  Of course, I realize that at any time, I could be right back where I started which is why I will never take my health for granted again.

In celebration of this momentus occasion, I'm having a sale in my Etsy shop, Catalina Inspired, for all of you who've read my blog and let's face it, really deserve something for going through the hell that is ME/CFS and Fibromyalgia (or what ever other challenges you face in life).  Please use the coupon code - 100THPOST - to enjoy 20% off your entire order in my shop through 7/16/2012.


Here's a sampling of what you'll find at

Catalina Inspired on Etsy:

Ok, enough celebrating and back to the topic at hand.

My two and a half year old daughter brought a lovely cold virus back home from pre-school earlier this week.  My entire family has been suffering with a horrible cough, sinus congestion and just feeling super crappy since then.  Before I fell ill on Tuesday, I had a reaction that reminded me that although my ME/CFS & Fibromyalgia are somewhat under control at the moment, what ever it is that caused them in the first place is still thriving in my body. 

I woke up Monday with a scratchy throat which didn't surprise me since I'd been constantly wiping my daughters runny nose the previous day.  What did surprise me however, was what happened later in the afternoon. I started feeling those all too familiar jabbing pains throughout my entire body. In an hour or two I was in bed with a heating pad, moving it from my back, to my legs, to my hips, etc and had strong, throbbing, stabbing pain throughout my whole body and was not able to get out of bed. I couldn't sleep because the pain was too strong. It was like I'd been transported back two years and I was in the middle of Fibromyalgia hell again.

Fortunately, I was finally able to fall asleep that evening and when I woke up on Tuesday, I felt as though I was getting the cold my daughter had but the jabbing pain had diminished to a tolerable level.

It makes me so curious to know why, when attacked with this common cold virus, my immune system revolted into a full autoimmune attack. It makes me think back to those theories about viral causes to ME/CFS & Fibromyalgia and wonder if there isn't something more to it.

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!)              

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.