Melatonin and Acid Reflux

I've tried to make the best of my detoxing nightmare with the Cymbalta and it's been hard, but I think I may have found one good thing to come out of this whole mess!  Before I get there, however, I need to say that I'm at around Day #27 of the detoxing and I think I might - just might - get out of this nightmare eventually. And I say "eventually" with great trepidation for fear of jinxing myself.

But the bit of an upside?  The other day I turned to the Internet for some sort of question but as per my usual MO, I ended up looking for everything but what I'd started on.  OK, that's nothing new.  But I like to think that I'm not alone with this sort of meandering so-called brain which can't help exploring anything and everything that pops into it. 

At any rate, last week I'd written that my acid reflex has gotten so bad that I am well into a second bottle of Tums.  I rarely get acid reflex but when it does happen, all bets are off because even the "little purple pill" advertised during the nightly news doesn't help, much less Tums.  Luckily, I normally have a "cure" for "heart burn" and it's simply stop pigging out and/or get enough sleep!

But recently the GERD has been completely out of control no matter what: sleep or no sleep, eating right or not eating right.  Acid reflux had found its way into me and wasn't about to loosen its grip on me anytime soon.  Yes, it's another of the many legacies of the Cymbalta fiasco.  I'm so glad that this stuff (the Cymbalta) will soon be out of my system and I am saying right now that I will "brever" take this sort of medicine again. ("Never say never," so I'm making up a new word, "brever.")  

May I add that over the years I've taken an embarrassing number of antidepressants - as well as all other sorts of medications - because of my CFIDS/ME/CFS and fibromyalgia, and its many comorbidities?  I've needed all sorts of medications to address the problems at hand, from steroids to Klonopin to Effexor, from Pamelor to Xanax to about 80% of the medicines out there that have at any time been thought to be great for these problems.  Then those medications get replaced by other medicines as new ones come out, as theories and thinking changes....

But the kicker has been that I've never had any sort of withdrawal problems in all the years that I've taken medicine to combat any old thing.  Not one medication whatsoever has caused significant problems as far as my (long-suffering) GP, (ever-suffering) rheumy and (most-suffering) me can remember.  This is wicked.  In the beginning I laughed and said it was no worse than being pregnant - trying to make light of what was happening - and only a semi-joke because my pregnancies were indeed nightmarish.  However, I really jinxed myself by "laughing" off the detoxing.  

But a little of relief has been found!  As I already said, the other day I got onto my trusty iPad and started looking up other symptoms I'm living with and I found a treasure.  Yippee!  And it's one that is a great bit of info to have, whether you're ill or healthy.  Surprise!

Dr. Andrew Weil reported that a group of Polish researchers found that melatonin may help with acid reflex. Wow!  If true, this would be truly amazing news to me. 

I pulled (ever-suffering) hubs into our bedroom and started interrogating him as to when I complained about acid reflex.  What, over the last 37 years, does he remember?  Although I trust his memory more than I do mine, I do remember that the first time that I ever had acid reflex was in grad school when I would pull all-nighters, having too many papers to grade, lesson plans to work up, my own coursework attended to, and so forth.

I also remember saying to my fellow students, "don't you just hate that awful burning that goes on if you get only an hour or two of sleep?"  They had no idea what I was talking about - perhaps because they weren't idiotic enough to pull as many all-nighters as I did?  (But then they were much brighter than I could ever be. Me: I just have more persistence than most.  I'm not as smart as most; I'm just a hard worker.)

Anyhoo, hubs and I do remember me having acid reflex when my middle child had colic for 11 and a half months.  Yet somehow, I've not had many episodes of acid reflex despite my significant lack of sleep.  For the most part, I'm really careful about what I eat.  I thought this was why my GERD wasn't torturing me.

So, hubs trudged out to our local pharmacy and picked up melatonin.  I've taken it now for the last two nights and blissfully, I've not had much, if any, acid reflex.

It finally occurred to me today that until about a couple of years ago, I'd been taking melatonin every night for at least 25 years - well, more or less.  However, somehow the melatonin ball got dropped a couple of years ago.  Actually, for any number of reasons many balls got dropped and I've been slow on the uptake in getting those parts of my health routine back on course.  I suspect the melatonin ball wasn't picked up earlier because I've seen chatter on the Internet in using caution when thinking about taking melatonin for CFIDS and fibromyalgia.  I suppose I've sort of been - kinda, maybe - waiting in the sidelines for some sort of definitive answer one way of the other - or an excuse to go one way or the other with it.  (What, me not being able to make a decision?  Nah!)

Well, whatever the debate and results may be, the melatonin seems to have helped me in two aspects of this miserable time I'm having vis a vis the Cymbalta withdrawal.  I've had two days of little if any acid reflex (no Tums!) and two nights of sleep - and miracle of miracles, the sleep was refreshing!

How wonderful has this been?  Considering that one of the unfortunate problems that those of us with CFS and fibro have is that our sleep is non-restorative that's pretty darn good.  Lately my sleep has gotten worse, hard as that might be to imagine.  Actually, my sleep has felt positively destructive.  I feel as if I'm in much worse shape after sleep, as if I'm paying some sort of price for working so hard at getting to sleep and staying asleep.  It's gotten so bad that I've been thinking, "how long can I go with such an essential part of life being destructive?"   It's like being allergic to water - or oxygen!  

So, thanks Dr. Weil, for bringing that rather long-ago study (2007) to our attention.  And, of course, melatonin has some pretty great properties: it's supposedly good for our immune systems (which may be controversial when it comes to CFIDS but I'll chance it), great for antiaging and as an antioxidant. I'm sure my brain will get used to the melatonin after a bit and it's effectiveness will be almost zero as far as sleep is concerned, but if I can get a few nights of restorative sleep, I'll consider myself lucky.

In the meantime, I hope this is the end of the GERD.  Now, if I could just get over the other gazillion problems that I'm experiencing from my Cymbalta withdrawal.  I wouldn't wish this on my worst enemy - if indeed I had one.

Is this melatonin thing not cool?  I'm so afraid that I might be jinxing this "find."  Perhaps a "knock on wood" and a tphoo! tphoo! tphoo! is needed - just in case!

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



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Aromatherapy: Getting My Act Together...

American tourist (that's moi, of course) discovering the beauty of essential oils while in England back in the late-1980's...

"And so I've been putting off something that has been a silly economy and a hugely effective tool in what has been part of my arsenal to seriously fight my severe Chronic Fatigue and Immune Dysfunction Syndrome (unfortunately, AKA "Chronic Fatigue Syndrome") as well as my fibromyalgia."

Since my traumatic hospitalization, I've been on a mission to reexamine past medications, past diets (as in "way of eating," though losing weight is always an issue), past physical activity that I could/can handle and so forth.  However, the other day it occurred to me that somehow I'd dropped a ball.  (There are, after all, so many balls to juggle.)  Worse, this was a hugely successful ball in my arsenal - for me, I hasten to add. It's the world of essential oils and aromatherapy meeting and treating Chronic Fatigue Syndrome (a less palpable term than CFIDS or ME) and fibromyalgia.  

I "discovered" aromatherapy quite by accident when going to a contemporary museums, i.e., to British grocery stores, department stores, book stores, drugstores (oh how I love to look at what personal items another country has) and so forth. (Don't you just love the term "contemporary museums"?)  

As I added the oils to my daily life, eventually I was able to graduate from a wheelchair to walking - not far, mind you, but enough that life was made so much easier.  I could walk in my bedroom area and if, need be, I was able to go down to the kitchen, although basically, the only thing that would come out of it was the newest disaster.  Talk about getting into a bad mood!   

My sleep (which I consider to be akin to labor although minus the great, miraculous result - a baby!) substantially improved. It was such a downright miracle that good ol' "Miss Irene" in her usual fashion of studying everything about a topic that tickles her/my fancy took it upon herself to learn all she could about aromatherapy - most of which has been forgotten by now.  Fibro-brain strikes again! ;)  But that's what books and the Internet are there for: we can do so much while still in bed.

Today I should be in a fantastic mood for quite a bit of the day.  (If this family could just stay out of the hospital for a while, I'd be on cloud nine!  Don't ask me where I was Tuesday night!)

Here are a few truisms about me:

• on the whole, it really takes so little to make me happy (Goodbye, pain! Please go down some sewer!)
• I am one of those female "weirdos" (as my middle child would put it) who hates to shop 
• nine times out of ten, I'll pick out a few basics at one of my "favorite" online stores, but then I am way too exhausted to actually place the order.  My brain is simply too fried.  Pain has its way with me. (Get your mind out of the gutter please, my dears!)
• there are just too many steps to placing an order.  You know that you have CFIDS/ME/CFS and/or fibro if this truism applies to you as well.  I have to wonder, what happened to my love of shopping, "window" as well as otherwise, which I had before this DD hit me?
• worse, with my short-term memory problems, my "attention" to how much things cost. My brain that is just soo fatigued once it comes to credit cards, filling out addresses, filling out passwords (searching for a piece of paper or the notebook that has SOME of them) is just more than I can handle.  Yes, I know: tell you something you didn't already know! (But it's validation, no?)

And so I've been putting off something that has been a silly economy and a hugely effective tool in what has been part of my arsenal to seriously fight my severe Chronic Fatigue and Immune Dysfunction Syndrome (unfortunately aka "Chronic Fatigue Syndrome") as well as my fibromyalgia.  Somehow nature's "gift" of essential oils, which has worked so well in the past, has fallen by the wayside.  

However, in the midst of writing this post, I finally shopped and then actually bought quite a few essential oils. (See the power of a blog? I'm actually able to cross an item off an old mile-long list for shame!)  I used to be a regular customer and would even foist the oils onto my kids for various things when they were growing up.  LOL: one friend's daughter of about 30 years ago, after not seeing me in ages, asked "are you still using that witchy stuff?"  Out of the mouth of babes.

AND NOTE: Did I mention that the "company," Aromathyme, from which I most frequently buy my  essential oils is having a sale of 10% though May 27, code word SUMMERTIME? 

Looks like it's time to bite the bullet and attack the things that essential oils can address. 

I've long wanted to start a series on essential oils, especially since the first post I wrote about my three most favorite essential oils had such a high readership.

Four Hours Later:  Oh how I wish I were joking when I say that this post was started well over four hours ago. It's taken me that time alone to go through the web site I was ordering from.  I've picked those oils which were so useful to me in the past.  I've picked a few new ones that look promising. I've taken advantage of the discount and free shipping.  I've picked according to conditions, many which I've discussed (harped?) about for ages: insomnia, mood, clear thinking, memory and so forth.  I'm absolutely thrilled that I'm going back to essential oils.  And I can't wait to get them in the mail as soon as possible. 

After a bit of experimentation, I'll let you know which are (still) successful.  And I'll let you know how it's going.  

Teaser: three of the essential oils ordered were ravensara, neroli, ylang ylang.  Heaven.

In the meantime, I hope all are feeling their best, only better!  Ciao and paka.


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Sleep: The First & Last Word in Fibro

Recently my rheumy and I had a discussion about how he likes to treat fibromyalgia.  Obviously, there is no one cookbook for this complicated disorder/illness but there is one very important principle he stresses.  First and foremost, fibro patients need to get better sleep.  That doesn't mean that you necessarily have to sleep long hours; it DOES mean, however, that you need to get the right kind of sleep.  In other words, the time that is spent asleep should be efficient in that enough "restful" sleep is obtained.

Rheumy reminded me that in the early 1970's, the link between a deficiency of restful sleep and the development of fibro was made by two Canadian researchers (Moldovsky, a psychiatrist - we'll give him a break that he went into THAT field! - and Smythe, a rheumatologist.)  Together they studied the sleep patterns of patients whom they diagnosed with fibro (or what would later be known as "fibromyalgia.")  Keep in mind that there were no accepted criteria for the diagnosis of fibro at the time.  The committee which set up the criteria didn't start their work until 1986/87 and the results were not published until 1990.  Moldovsky and Smythe observed that their fibro patients had a deficiency of Stage 4 non-REM delta wave sleep, the deepest, most restful sleep.

However, because they were good researchers, they realized that this deficiency might be the effect of fibro, but not one of the causes.  To try to figure this out, they attempted to experimentally induce fibro symptoms in healthy young adults.  Most of these subjects were college students (ah! that brings back memories of the days when I used to volunteer for silly psychology experiments!).  While observing how their victims subjects slept, the researchers interrupted the sleep of those hapless college students during different stages of sleep and monitored the effects.

For example, M and S (or would that be S&M?) would use a loud noise, an electric shock (had they never heard of the Geneva Convention?) or simply jostled the subject until the subject was out of whatever stage S&M the researchers were investigating.  When the subjects were deprived of Stage 2 sleep, for example, they did not get fibro pain.  Neither did they get fibro symptoms if any of the other stages, except for Stage 4, was interrupted.  When Stage 4 sleep was absent all of the healthy subjects developed fibro symptoms within a few weeks.  

Interestingly enough, some people developed symptoms later than others.  It turned out that these subjects (the ones who developed symptoms later, that is) were athletes, prompting the investigators to suspect that if you're in really good physical shape, it's harder to get fibro.  In other words, the usual sleep patterns of fibro patients looked exactly like the sleep patterns of the healthy young adults whose sleep was made abnormal, that is, when Stage 4 was interrupted by the researchers.  It's important to note that when the subjects were allowed to sleep without interference, all of the fibro symptoms went away.  This was not surprising since they were healthy otherwise, and were able to resume their normal sleep patterns quickly.

And so, in 1974 and 1975, Moldovsky and Smythe's findings were published in the Journal of Psychosomatic Medicine, which led to the whole decision to see if there was indeed a new "thing" in medicine, and if so, what was it and what to call it ... a story all its own, for another time.

Now, what can Moldovsky's and Smythe's finding teach us in 2013?  It appears that the development of fibro depends on a selective sleep disorder.  This may be very relevant for those suffering from CFIDS/ME/CFS as many of these patients also have fibro.  It may not be the only reason someone gets fibro but it is probably a necessary condition for actually developing fibro.

The research also tells us that if you resume a normal sleep pattern, you have a good chance of having your fibro symptoms improve or even go away for periods of time.  However, that is easier said than done.  How does one improve sleep and more specifically, how does one GET Stage 4 sleep?

One thing my rheumy told me is that he always asks his patients about things that might interfere with sleep and delves rather deeply into this aspect of a patient's life.  This is also why he likes to have a spouse or "significant other" there while talking to his patients: the "other" can often speak about what is going on with a person while he/she tries to sleep or thinks he/she is actually sleeping.  Some interference is, of course, easy to know and describe.  This can range from being interrupted by pets jumping on you while you're trying to sleep to a crying baby or not allowing yourself enough time to sleep because of work or other pressures on you. I abhor the term "sleep hygiene" but it does sort of have a place in that you should make sure your sleep is not interrupted by external factors.

However, there can be other issues not so easily registered by a patient.  I, for example, had a stage when I evidently had such fierce arguments with Stalin in my sleep that one night my weary hubs asked that if I were to argue with Stalin that night, could I at least argue in English so that he could be entertained?  (Cute, hubs, cute!)

Another thing that needs to be corrected is nocturnal myoclonus (link) which can literally jerk you out of Stage 4 sleep.  Of course, sleep medications can help, but that's a subject for another post.  

Obviously, sleep is a huge issue for fibro patients and if the sleep problems are not resolved there is little hope that the other symptoms such as pain, fatigue, decreased stamina and cognitive issues will improve.

As always, hoping everyone out there is doing their best, only better.  Ciao and paka!

Myofascial Pain & Fibromyalgia 101

What a fall!

How often have too many of us heard a fibromyalgia patient say that his or her fibro started after some sort of traumatic event such as a fall, a physical assault, or a motor vehicle collision?  Often they claim that the fibro did not come on quickly but that it took many months or years to develop.  How can this be?  What's going on?

For today's discussion, let's use the example of a neck injury.  Surely many, if not most cases of neck (i.e., cervical) strain and sprain, resolve themselves within a few weeks.  However, some don't.  For a variety of reasons the neck, pain and stiffness persist despite medical treatment.  This is how a condition called "myofascial pain syndrome" (MPS) frequently develops. (See links to Dr. Travell here and  here and myofascial pain here and here.)  A muscle - or muscles - hurt as a result of the trauma,  the area doesn't heal, and, in fact, there's a new development: abnormal areas which are called "taut myofascial bands" which contain irritable places called "trigger points."  These trigger points can be extremely painful when stimulated by direct pressure on them or by stretching the muscle in which they are found.  (Understatement of the week!)   To make things worse, the pain may be felt not only WHERE the trigger point exists, but in distant areas as well.  For example, a trigger point in the neck can cause headaches, shoulder pain and/or upper back pain.

Some people get over MPS with standard treatment such as massage therapy, trigger point injections, pain medication, muscle relaxers, and so forth.  (All of which will hopefully be addressed in the future.)  However, other now-patients develop a chronic form of MPS, and still others develop fibromyalgia on top of the chronic MPS.  And how is it that this happens?  Well, I'm absolutely tickled that you asked!

It's known that fibromyalgia develops in patients who have a deficiency of deep sleep.  If the MPS sufferer is in chronic pain and sleeps poorly, he/she is at risk for developing fibro.  

There are complicated mechanisms involving "expansion of receptive fields" which also involve the neurotransmitter Substance P (for more on Substance P link to here and here).  Substance P travels from the muscle that was originally injured to other muscles causing them to hurt in turn as well.  If this happens long enough, there can actually be changes in the brain which can alter pain perception through a mechanism called "central nervous system neuroplasticity,"  This can take many months or years to evolve thus leaving the injured person with a widespread pain condition despite everything originating with "simply" a neck injury.  In 1997, this was explained in great detail in a study done in Israel by Drs. Buskila and Wolfe which was published in the journal, "Arthritis and Rheumatism."  

So, there you have it.  A neck injury can be resolved in a few weeks.  Unfortunately, it can all too often develop into MPS, and even evolve into fibro if the chronic pain condition is not addressed and controlled early.  The best way to treat this type of fibro is to prevent it. 

Can you believe it?  A short post - and you didn't think that was possible!  

Hopefully, this will allow you to better understand my earlier posts dealing with how pain medications work. In addition, I hope this helps to create a better foundation for understanding other more scientifically-oriented posts about pain in the future.  I suppose I'll have to start on creating a new tab with "definitions" - SOON! 

As always, I hope everyone's feeling their best, only better.  Ciao and paka! 


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Sleep Matters

I must say that these last couple of weeks have been the strangest I've had in quite some time. Anyone who's even a rare visitor to this blog can't help but realize that I have serious sleep issues.  For example, we're talking about regularly not sleeping for days and nights on end. After a couple of days of unrelenting "awakedness," my family walks around saying, "mom's due for a 'marathon' sleep!" - as everyone holds fingers crossed.

The "marathon sleeps" are wonderful, absolute bliss, almost heaven.  They can last up to 24 hours and one year I had a most unusual one.  Exhausted from all the holiday goings-on, I fell asleep on Christmas Day and slept right through to New Year's Eve.  I only woke up occasionally to mozy on off to the bathroom, gulp down a glass or two of water and literally pass right out again - in bed, of course.  Yep.  This was quite unusual. Typically, a marathon sleep is at least 12 hours, I would guess, and can go on up to 24+ hours.  However, the problem is that the marathon sleeps never ever come close to making up for the time I've lost due to the insomnia. So, that's the setup.

I've been battling the flu, on and off, for at least six months, perhaps longer.  Yep.  My funky immune system just can't seem to get its act together and no matter how much prodding I do, insulting, or even encouraging, my immune system simply doesn't seem to want to listen to me. And, to be fair, I don't want to listen to IT.  I suppose you could say that we're "frenemies." I have reason to be mad at it, although I must point out that I most certainly have NO idea why it doesn't want to be friends with me.  But that's neither here nor there.  

Sleep = a better, stronger immune system.  One of the reasons that those of us with the dreaded CFIDS/ME/CFS and/or fibromyalgia have such a rough time of it ("rough," really? no stronger word can't be found?) is because insomnia rules.  If you don't sleep, your immune system doesn't function optimally.  Of course, there are a lot of other factors contributing to the whole immune system issue, but restful sleep is really key and perhaps prime.  That is, quality counts!

So, what is it that has made this such a "weird" last few weeks? 

My body has decided to attack me from a new direction.  Suddenly, I'm falling asleep right and left.  Then, beginning with last Thursday night or so, I started having an incredibly weird sleep pattern.  I was working at my PC and kept waking up, surprised, because I'd find my head on the keyboard, NUMEROUS times!  At one point I woke up with my head on said keyboard, glanced at the time and discovered that two hours had passed.  I'd be working on my iPad in bed and wake up with a start because the iPad had fallen onto the floor and the noise then woke me up.  Hubs has had a hard time hearing the TV the last few days as we were supposedly watching some of our favorite shows together, because I was, EVIDENTLY, snoring away loudly. (Evidently?  Yes, I swear, sometimes I think he makes this stuff up, just to get my goat!)  

What the heck has been happening to me?  If I'm not careful, I may very well end up having to relinquish the title which so many sleep specialists have bestowed upon me: that of one of the WORST insomniacs they've ever had the misfortune to come across.  Were I searching for titles, "one of the worst insomniacs ever" is not the one I would choose.

But I digress.

It seems that my body and brain have decided "enough is enough."  Body and brain seem to be disgusted that I can't seem to get down the concept of LOTS and LOTS of rest.  I keep postponing rest until a "good" time comes along - my gallbladder and the hypothyroidism pretty good examples.  And so they seem to be trying new battle plans to get the message through to me - that once I feel a little better, I need to continue to rest. Actually, it's much like the warning you get when a doctor puts you on a course of antibiotics: do not stop taking the antibiotic once you feel better but take the entire course.  I tend to take on a small project as soon as I feel better, absolutely convinced that I'll suddenly be healthy and wake up only to discover that the last 38 years have been a bad nightmare, having been lived in some parallel universe and that my health is, indeed, fine and dandy.  

At any rate, my body's newest attempt to combat all the assaults of the past year (not to mention all the assaults of the last few decades) is that it's finally making me sleep.  I'm not sure how long this will last - we all know that in mentioning it here, I've really and truly jinxed myself - but I am so enjoying all this overwhelming sleep at the moment, even if I AM more disoriented than usual, time and day-wise.

BTW: did you know that you can get all itchy from a virus?  I've been going through a bout of itchiness like I've never had before and the med I take to prevent hives/itchiness has not been able to stop the itches.  I may soon go mad!  On the other hand, what validation: to know that this is not "imagined," but is a real scientific fact.  I'll take whatever validation the medical community reluctantly doles out!

The most frustrating part of this flu at the moment is that I feel great-ish one day - or even one hour - only to feel myself suddenly sicker than even before, running a high fever, sweating, unrelenting pain.  The sweating persists even as the fever goes away, my body temperature returning to my normal 95.5-ish.  But that, the sweating that is, is a subject for another day.

As always, I hope everyone's feeling their very best, only better.  Ciao and paka. 


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Friday Tidbits: Bits & Bobs of Help

An idea of the switch-in-the-cord idea,though not the sort of lamp I'd use for bedside. (But oh so pretty!)

It's Friday again and once again I'm so happy to see the week is coming to a close.  (I've written that a bit too often lately, haven't I?)  The family's been stricken with various degrees of the bug which never went away, all because of the freakishly warm winter of last year.  More than ever, I'm personally looking forwards to a few good, hard freezes to kill off as many of the viruses and bacteria as possible, those looming around our town. Last night hubs was almost spitting bullets because I had sheets of sweat coming off of me as I tried to write my post. Today, I can see that the worst is almost over, but I still just want to sleep, though still not sleeping as much nor as well as a "normal" person would.  Everything's relative!

Oh Dyson DC35, how I love ya!

• In fact, talk about sleeping: I've had more sleep this week than I've had in years!  I wake up and am totally miserable but finally fall back asleep for a minimum of a two-hour nap, unable to keep my eyes open.  Who knew there could be an upside to my flu?  
• Not too long ago, my BFF and I were on FaceTime and one of the things that came up (we CAN and DO talk about everything, anything and nothing, for hours at a time) was that she brought a gem of a vacuum cleaner.  She recommended that I buy the Dyson "digital slim," dubbed by Dyson to be "the most powerful cordless vacuum."  Well, I finally ordered it from Amazon and their description is no exaggeration, so good, in fact, that I quote:

• The Dyson Digital Slim vacuum cleaner has twice the suction power of any other lightweight cordless vacuum cleaner in use, making it the most powerful cordless vacuum. It is ideal for quick, flexible cleaning on all floor types, stairs, upholstery and inside the car. 

• Dyson engineers developed the DC35 for versatile spot cleaning- it’s suitable for every floor surface: carpet, vinyl, tile and wood. It has a motorized floor tool with two types of brushes. Ultra-fine conductive carbon fiber brushes remove fine dust from hard floors. Rotating nylon bristles remove ground-in dirt from carpets.

• The detachable long-reach wand is made from lightweight aluminium. It reaches high, low and into awkward spaces. You can also remove it and use DC35 as a handheld. A docking station conveniently stores and recharges the machine when not in use, or the battery can also be recharged separately from the machine."

I was thrilled to see that it was all and more than BFF (and Dyson) had described.  It's especially good for anyone who is sick and can't do much.  It breaks down into small parts and you can actually do stairs with a minimum of effort.  There are no pesky cords to mess around with (I absolutely have an OCD-like loathing of cords of any sort) and can grab it quickly for a small job like the carpet that's by my bed, without worrying about overdoing it.  And because it's so easy to use, you end up using it a LOT!  (Actually, it's quite addictive!)  For more on this miracle product, see this link.  It's worth every penny!  Check the before and after Christmas sales as BFF found a 20% off sticker price on Black Friday weekend, too late for either of us, alas, though we're not at all remorseful because it's just THAT incredible!  And a note: I had a bit of a sparkle and glitter episode from some Christmas ornaments we recently bought.  It was EVERYWHERE.  The Dyson DS35 took on the mess as if it were fighting the merest of jobs.  Phew!  

• With Christmas quickly looming ahead, I'm not sure we'll even get to finish the trimming this year. As soon as the lights were up on the tree, the ER runs started in.  It's a rather nasty GI bug. Forget about the outside of the house: we've only slapped a wreath onto the front door, this in a neighborhood and town known for its "city of lights" reputation with well over a million tourists coming in for the festivities.  Frankly, I'm surprised the neighbors haven't run us out of town yet. (I'm certain that they're giving us a year's grace period before doing so, so we have GOT to get back on track by next year!)  I'm trying my best to be mature and realize that hubs and I are no longer young enough (what???) to do the outside decorations ourselves and will have to start looking for someone to do the honors next year.  I suppose, too, that that IS the responsible thing for the person with CFIDS/ ME/CFS and/or fibromyalgia to do, though how I hate giving in.  But, it's all about "health credits" and "spoons" now. 
• And finally, such a seemingly mundane "little" thing which is driving me loony-tunes.  I'm looking for the lamp I had by my nightstand before we'd temporarily moved up to the attic.  It was the sort that has the on/off switch on a cord and, it turns out, it's such a great feature to have.  The on/off switch would rest against the side of my nightstand and it was so easy to just move my hand over ever so slightly and have the light off.  Instead, now I need to reach all the way over, through a jungle of items, trying not to knock anything down as my hand searches for the actual lamp in order to turn it off in the "usual" fashion.  Nine times out of ten, it wakes me up if I'm just about to fall asleep, often with a bit of a disaster as things fall over. With the little cord by my side, it was so easy to turn the lamp on and off... absolutely wonderful for the insomniac. If you have trouble with sleep and get upset because of the lamp issue, consider the lamp with a (toggle?) switch on the cord.  Oh my: who knew that there IS a wire out there that doesn't get on my nerves, but the very opposite.

And that's it for the day!  I hope that everyone's doing their best, only better and enjoys the weekend!   Ciao and paka!

Confession's Good For The Soul?

                 This child will hopefully never have a weight problem: he keeps farmer's hours!


I must confess.  Yesterday I "sinned" and I can't handle holding that secret.  It is making me go bonkers to have allowed anyone at all hear me declaring the definite steps I'll be taking in my conquering, to my best, my CFIDS/ME/fibro/migraines/sleep disorders, etc., to arrive at a bit of a true-blue "not looking too shabby for her age" for my upcoming birthday in October and me not doing it.  As I'm sure half the world knows by now (delusions of grandeur?), I went into a Herxheimer-like reaction after KL.  Things were catching up with me from the compartment syndrome surgeries, not to mention two years of living on the edge with my daughter's sudden illness which stopped our entire family's lives cold as we rallied and fought to keep her going.  And these are just the high points.


We're into year 3 of remodeling (walls going up or down, the house being totally reconfigured), though I see I won't be getting my dream kitchen, even modified, any time soon.  This is a huge set-back because I had remodeled it on paper where I could do a bit of bossing around as I lounged in a semi-family room (thus getting me out of bed!) looking out on a lovely garden (perhaps even going out for a bit now and then) and in the other direction, instructing whomever on cooking and baking.   To me, the kitchen is sacred because it's truly the heart of the home. (Cliché but true!)


But really and truly, I definitely do think that there's something new, majorly wrong with me, that which started affecting me back in November, which, in its own way, started me into a downward spiral.  I'm not being very helpful to my doctors as I don't know how to explain this new malignant feeling, whatever it may be, and really, where does one begin?  But blood work has been ordered as everyone scratches their heads and I can't be more useful in my description, seemingly having run out of all descriptions and besides, working hard on just hanging in there.  Think about it: good thing I was a English lit major - how else could I have supplied so many descriptions over the years?  Well, that mine gave out a while ago. Now the docs are on their own for the most part.


But going back to the confession.  Just as I was FINALLY almost off all sugar ("detoxing" was really and truly hard this time), I ate something I never eat anymore: potato chips!


Now the good news is that afterwards I slept - and well.  The bad news is I ate a huge bag of chips. And y'all just know it didn't stop there!  Ben and Jerry's followed with brownies.  Yuck!  


But I'm officially washing the slate clean and starting anew.  So here are the latest things I'm going to work on because we are talking about a beached whale here!  (Too ill to do much moving, BP perilously low, nothing helping pain, blacking out each time I get up, migraines galore, all senses heightened even more than the usual...you get my drift.)


- So, on the diet front, eating "my healthy way" is just not gelling as well as usual, though I will certainly keep on trying.  I have to.  I need to feel better.  Hubby better get into this but a problem is that just last week he made me a wonderful salmon dinner and I almost barfed.  (Uh...I guess anything that swims is out.)


- After yesterday's post about the hormones and sleep, I must come up with a better sleep plan.  I've been thinking of various ways to work on this (as if I haven't all these decades?) but I hope yesterday's post was a huge shot in the arm, or kick to my be-hind, whichever!  So pep talks to self will commence. ("Haranguing" may be the more accurate word.)


- I need to make up menus - something I've been meaning to do for I have no idea how many years.   This way, instead of going through the whole thing of, "what do you want to eat," and "well, what do you have?" going back and forth for (literally) a couple of hours, we can make a list for the week from the "Irene" menu.  And, strangely enough, food, for the first time ever (other than in November) holds no appeal to me.  I derive no satisfaction from it.  However, I'm still always hungry, something that should have ended a couple of days ago.


- must teach hubby portion control.  (Losing battle!)


- need to take those vitamins religiously (Post coming up soon, I swear!)


- drink more water, especially before a meal. (It's just water, self, and I don't need to climb Mt. Everest to get it, for heaven's sake!)


- a weekly IV nutritional, similar to a Myer's cocktail.


-be more precise and consistent as to the hour I get my HGH shot, etc.


I was struck by the line from yesterday's post where the researcher found that with not enough sleep, no matter how much a "subject" ate, they were never satisfied.  Bingo!   My life in just a few words!  And THIS is precisely why I think sleep and food and their relationship to each other absolutely need more research.


There's not much money for the Big Pharma's regarding CFIDS/ME/fibro.  But there is a HECK of a market out there for insomnia and pain. (Just watch the commercials during the network 6 PM news shows!)


We just need to figure out how to make Big Pharma's realize these things and see the market for profit for these illnesses.  I think then we'll start seeing a huge and quick amount of info coming forth that would help us tremendously in the CFIDS/ME/fibro, insomnia, migraine world, as well as many other diseases or disorders.


What do YOU think?  Any other ideas for helping us put on our most gracious faces?   Because yesterday was not one of my more gracious days and that shames me.


At any rate, hope all are feeling the best they can be, only better!  Here's to a terrific weekend, however and wherever you spend it, with some mighty good sleep!

Just Thinking: The Sleep and Weight Connection

                                                They look so deceptively cute when they're asleep!


Just in the last few days I've sort of been browsing the Internet to see if there were any good ideas left that I'd not considered regarding weight loss, or ideas I'd forgotten (very likely!).  It's strange how most of those who have CFIDS/ME/fibro and insomnia tend to have weight issues and everyone seems to blame the meds which need to be taken (valid point) and the inactivity, for legitimate reasons, on the part of the  patients (also a valid point).  However, the vast majority of "us" have too much weight and the lesser percentage of patients with these issues tend to have trouble keeping weight on.


What, pray tell, is it that makes for one group to gain and the other to have trouble keeping weight on?  It just doesn't seem to be all medicine and not enough activity, at least not in my case.  I've done a lot of thinking about it, thought back to my own early days of this illness and then thought about those whom I've personally known with the illness(es).


I'm not sure if anyone has looked into one theory I've come up with.  When I mentioned this to one of my doctors recently, he said that he'd never thought about it quite the way I had.  I tend to do a LOT of thinking, much of it outside the box, and I also have an awful lot of time on my hands, so, what else is there to do BUT think?


And so I can't help wondering if there isn't another huge factor involved here?


Could it be that in the first stages of this illness, sleeping so much in the beginning of CFIDS/ME may affect our appetite and weight?  I've stayed away from the sleep issue thus far mainly.  It's such a difficult and complex subject and each time I start a post on it, everything gets all jumbled up.  I want to get it ALL out there and can't seem to manage the "baby steps" approach.  I'm hoping that today's effort actually works!


In recent years it's become clear that when it comes to sleep - or lack of it - there are many hormones at play - and they all heavily influence our gaining or losing weight.  Basically, the less you sleep, the more poundage you put on, the more (as well as better sleep - very important point!) you sleep, the less poundage you put on.  I have to resort to simple explanations because I'm not a scientist, after all, only a patient. But what brought the sleep and weight relationship to the fore was when studies started to home in on appetite and specifically, research on the hormones leptin and ghrelin.  Doctors say that both can influence our appetite and studies have shown that production of both may be influenced by how much or how little we sleep.


Suddenly doctors saw that if a patient experienced a sleepless night followed by a day when no matter what the patient ate, he/she never felt full and/or satisfied, these doctors surmised that the patient was experiencing the workings of leptin and ghrelin.  According to the Atlanta School of Sleep Medicine "Leptin and ghrelin work in a kind of 'checks and balances' system to control feelings of hunger and fullness. Ghrelin, which is produced in the gastrointestinal tract, stimulates appetite, while leptin, produced in fat cells, sends a signal to the brain when you are full."


So what's the connection to sleep? "When you don't get enough sleep, it drives leptin levels down, which means you don't feel as satisfied after you eat. Lack of sleep also causes ghrelin levels to rise, which means your appetite is stimulated, so you want more food."


The two combined, the sleep specialists say, can set the stage for overeating, which in turn may lead to weight gain.

There's a whole lot more to this whole thing, but these are the latest basics. And I'm so glad the docs have finally figured it out - I've been telling them for at least 30 years but no one listened!  At least one neuro acknowledged his amazement and asked, "how did you know?"  My answer: "YOU try living my life and you'd know too!"  Note to doctors: please listen to your patients!


So, if in the early stages a patient with CFIDS/ME and fibro, sleeps a great deal of the time, can that explain why that person fails to keep weight on while others - ones who don't sleep - have trouble keeping it off?  I remember that when hubby and I first got married, he was shocked at how much I slept on the weekends.  We both remember my arriving home from work on Fridays and sleeping through till Sunday, on the living room couch, still in my work clothes, in our teeny tiny NYC apartment with hubby moving around and not waking me in the slightest.  


And is there a point where things get switched around?  That is, because of all too many factors, "we" eventually start having trouble sleeping: because pain sets in and interferes with any sleep patterns, as do school and deadlines, colicy babies, and so the hormones are off again and weight is put on, big time?


There are so many more issues at play here, but I did want to at least start this unorthodox dialogue.  I, personally, am really scared of the whole sleep bit.  It's getting harder and I'm getting older and I simply don't have the stamina needed to fall asleep - it's so much work -  because make no mistake, sleeping with no schedule, not enough hours for any period of time, and the lack of good quality sleep, all takes a huge toll on you.  However, at night I'm definitely not desperate enough to take rohypnol, the date rape drug one neurologist insisted on for two years!  Ambien has caused me enough trouble, thank you very much.  I'm not even going to mention the mess Lunesta got me into!  I'm trying to cut back as much as possible with those meds which make me gain weight (because I find it easier to function with less weight rather than more weight) and, of course, I check and recheck all my meds to keep track of side-effects which might interfere with sleep. I don't take ANY chances of ingesting anything that might interfere with sleep.


Is sleep the bane of people's existence out there, too?   Don't be shy. We'd love to hear others' experiences.


Here's to everyone feeling their absolute best, only better!