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.

Friday, March 29, 2013

Friday Tidbits: Dr. Wolfe, Friend or Foe?

There is an old saying, "with friends like this, who needs enemies"?   Yesterday, this saying came to mind yet again when I stumbled upon an interview with Dr. Frederick Wolfe of the University of Kansas School of Medicine which appeared on news-medical.net/news/.  I know the name well.  Dr. Wolfe is a "well-respected" rheumatologist who was head of both the 1990 and the 2010 fibromyalgia criteria committees and has authored more than a few articles on fibromyalgia.  His forté is doing clinical research, typically with questionnaires and analyzing the data using statistical methods. 

Despite his impressive credentials, there is much in this published interview which I take issue with.  He describes the symptoms of fibro fairly well and is spot on when he tells us about the prevalence of fibro in the population.  However, he's made some statements which are questionable.  Wolfie just can't help being Wolfie, I'm afraid.  Bless his heart.  Examples of these are:

  • Doubting that trauma can cause fibro despite copious medical literature which links trauma and fibro in a cause/effect relationship.  This is especially disturbing since Dr. Wolfe wrote an article, published in 1994, entitled Post-Traumatic Fibromyalgia and in a subsequent article published in 1997, he wrote that trauma may cause fibro.  (Is there an inconsistency here somewhere?  Duh!)  
  • Stating that women have a lower pain threshold than men: is he kidding?  Does he not talk to women?  Has he never had a mother, a wife?  Has he never talked to a woman who's gone through labor?  Did he skip the ob/gyn rotation?  Had he not seen or helped in delivering babies?  Shame, shame, Wolfie!  You might want to think about taking that one back!
  • He spends a lot of time talking about psychiatric illnesses suggesting that fibro is a "physical symptom disorder," a condition that is a psychiatric problem which can be found in the psychiatrist's bible, known as the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5), about to be published, despite great criticism, in May.  Does he really expect us to swallow this hogwash?  Has he forgotten or simply ignored the research that has shown, among other things, spinal fluid and muscle abnormalities in fibro patients?  This is not to say that some fibro patients don't have mental disorders BUT these psychiatric problems are on top of the fibro -  a far cry from labeling fibro patients as having purely psychiatric problems.  
  • He implies that fibro patients go to the doctor only to obtain disability benefits and to manipulate the system. Is he on crack?  What fibro patient doesn't want to get better?  In fact, some fibro patients are so frustrated with their lack of progress that they often go from doctor to doctor NOT seeking "drugs" as some may try to make us believe, but in order to find real help for real health problems.  To suggest that fibro patients are malingering and only out for money is insulting! Shame on you, Dr. Wolfe!
  • He said that "fibromyalgia represents a dominant theology."  This is just too bizarre for words.  What does "theology" have to do with anything in regards to fibro?  
  • He bashes the pharmaceutical companies for coming up with medications to treat fibro.  Again, the issue is money.  Somehow, in Dr. Wolfe's mind, the pharmaceutical companies are preying on fibro patients in order to make profits.  Does he not prescribe ANY medications for HIS patients? Urrr.... I don't think he actually sees patients other than to hand out one of his blasted questionnaires.  Yes, these companies do want to make profits, but they went to the trouble of developing and marketing medications that help a lot of people.  Does Dr. Wolfe work for free? 
Although Dr. Wolfe is considered an expert in fibro I truly doubt that he has practical experience in treating  patients.  Since he is the one who brings up money, I would like to see the sources of his income.  I'll wager that the bulk of his income comes from government and pharmaceutical company grants and not from providing direct patient care.  

So, having said all of this, who am *I* to "pick" on Dr. Wolfe?  

Well, prior to the 1994 Vancouver meeting, I'd been to quite a few conferences on fibromyalgia or had sources who had been to many meetings.  These were meetings where the doctors who came together were enthusiastic physicians who were seeing a "new" entity and wanted to get to the bottom of what was happening to their patients.  

A rheumatologist known to me did his fellowship under one of the, if not THE, foremost world experts in lupus.  When he decided to leave benchwork research for the world of private practice, he was overwhelmingly surprised that the patients inundating his office were not lupus patients but were patients presenting with some sort of new entity that he'd not seen much of before.  This happened to a lot of doctors of that era.  And that new crop of rheumatologists saw that something had to be done about this newly-developing illness/syndrome.  Thus was the fibromyalgia criteria committee formed in 1986 which culminated in the publication of unified fibromyalgia criteria in 1990 - yes, the ones that Dr. Wolfe was in charge of.

These doctors were our heroes, that is, the hero to those of us who suffer from fibromyalgia.  They were made fun of and mocked by their fellow (older) physicians.  I know of one incident where a plastic surgeon came up to a rheumatologist at a party and said, "so, just between you and me, do you really believe in this fibromyalgia thing or are you guys just trying to make more money?"  OK, so the plastics guy had had a bit too much to drink, but this is a great example of how these young rheumotolgists were treated across the board by other doctors at the time.  And, I must say: EXCUSE ME?  Talk about nerve!  We patients have had to put up with a lot of crud, but think about what those pioneering docs had to put up with! 

When I went to the Vancouver meeting, I was shocked.  Gone was the comradery.  Instead the place was divided and the tension was the proverbial kind you could cut with a knife.  Everyone was in the foulest of moods and I don't think it had anything to do with the fact that OJ had just murdered Nicole that weekend.

Today, Dr. Wolfe is "respected" mainly for one reason.  He holds the key to many grants.  This is called "sucking up" in most places.  Furthermore, the behavior on the part of Dr. Wolfe is the kind of behavior which has caused many other specialists in other fields to leave benchwork behind, knowing what sort of petty people are responsible for handing out the research dollars.  Frankly, I believe many (if not most) academic rheumatologists are afraid of crossing him, allowing him to spout off unchallenged for the most part. 

A wolf in sheep's clothing?  You decide. 

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

Thursday, March 28, 2013

The Scoop on Finding a Great Doctor

"The good physician treats the disease; the great physician treats the patient who has the disease."
                                                                                                 -Sir William Osler

I often get inquires from various sources asking how one goes about finding a great doctor.  Let me assure you that soon I'll find myself in that same position as well and I absolutely dread it.  After all, I'm in a pretty good situation, doctor-wise, for the most part.  (It took me long enough!)  When we moved to our "little town" - with it's freakish excellent medical care and a long story as to how THAT came about: for humanitarian reasons I'll spare you.  My doctors were, on the whole, about ten years older than myself.  Now it's time for that crop of doctors to retire and it scares me for many reasons.  Recalling how I went about building my arsenal before, and in thinking about what will soon be, I've come up with some tips as to how to go about trying to find those "treasures" out there.  I hope the following tips will be of help.  Here we go: Drum roll please!

  • Probably familiar to all is the referral from a TRUSTED family doctor who knows you as a person, not just as a number or a disease and knows the "inside story" as to who's "good" and who's not so good.  This came in handy (understatement!) when our daughter became so deathly ill.  We trusted her local GI man but he said he wanted her to be at the other, farther away  "major medical center" when her colon blew (not IF, but WHEN).  I was shocked because we had already discussed that as a vague possibility and that she might need to be sent off to a city an hour away from us and one always hears about it on the news.  But he was adamant about her being a MMC 3 hours away, because, he emphasized - looking me straight in the eye with no joking about - that he wanted her to be known to whichever surgeon would be doing the inevitable surgery when the "unthinkable" happened.   He wanted her to be known as so-and-so, who loves music, teaches children with severe autism, loves to travel and so forth.  He most certainly didn't want her to be patient number #24601.  (Did I accidentally assign my daughter Jean Val Jean's number?  I think so!)  And how right he was.  Her to-be surgeon saw her at least once a day with his "fellow" seeing her, separately, once a day as well.  She was well known when she was rushed to emergency surgery when that sucker blew and we were all so thankful to her GI who had such wisdom and courage to demand she go to the "best place" in the US.  Furthermore, when *I* started to "negotiate" for bits and pieces of her colon, my daughter calmly said, "nah, take it out!"  She had THAT much confidence in her surgeon. (I'm sparing you the screaming in pain that went on with that "nah, get it out" bit.)
  • "Nothing succeeds like success."  Word of mouth from family and friends can be extremely valuable.  You are looking for a doctor who will treat all of you, not just an organ or a hormone level.  If someone you know and trust has had great results consider going to that doctor for a work-up and treatment.  (See the Osler quote above.)
  • Do your homework.  You want a doctor who is extremely competent and with excellent credentials.  Make sure that the doctor is board-certified in his particular specialty and if possible, credentialed in pain management by the American Academy of Pain Management or certified in Pain Medicine by the American Academy of Pain Medicine.  That's a good start.
  • Make sure you investigate your prospective doctor's office policies ahead of time if at all possible.  Get a feel for how long the initial visit will take, how much actual face time you will have with the doctor, whether a nurse practitioner or a physician's assistant will be involved in your care (instead???), how much the visits will cost, and whether or not the doctor accepts your insurance coverage.  I've found that there's nothing worse than going to a specialist and finding out that there has been a bait and swich. You want to see the doctor you plan on seeing, not someone who was simply trained by that particular doctor.  Worse, you want to see the doctor you plan on seeing and not be shoved off to a physician's assistant.  I don't have a problem with PA's and so forth if 
  • it is a minor matter and not for my CFIDS/fibro/endocrinological/neurological, etc, care 
  • I see the doctor whom I've dished out a lot of money to see and traveled a long way to help me.  Some of you would die of horror if you know which doctor did this to me. 
  • You want to make sure that an initial visit will be long enough to deal with your problem in great depth.  I see my GP for almost an hour each time, which is why he always sees me at the end of the day, knowing how complex my case is.  (OK, he also like to rattle my chain, but that's a small price to pay, especially since I like to rattle his chain as well!)  My endocrinologist's office assistant is upset with me, I think, because the endo spent at least a hour or so with me this last time; remember: he needed to deal with my usual HGH problem, the new hypothyroidism problem and the reality of having had gall bladder surgery and what THAT was doing to my hormones.  Furthermore, since things weren't going well with the thyroid and I am/was convinced that we are on a "Hunt For Red October"*, we needed to make a plan as to how we would proceed.  *I* was ready to scream "uncle" in order to get out of there, but there was a lot that had to be gone over.  And finally, my rheumy takes between two and four hours for an initial visit, but then he sees what I call the "train wrecks."  I hope this gives you a good guide for what is reasonable and unreasonable.  Hint: 20 minutes is absolutely unreasonable for a big problem. In fact, if all you get is 20 minutes with the doctor, you are being cheated - get out of there fast and find someone else, pronto!
  • If you are complex and require a lot of time with the doctor, make sure that enough time is allotted for him to evaluate you thoroughly and for him to answer all the questions you have.  This is especially true when you consider that you don't want the doctor to allot x amount of hours, or x amount of minutes and then feel as if you're getting the bum's rush because he has a waiting room full of patients yet to be seen.  If  you are a complex case, you might let the receptionist know that you are going to need a lot of time.  If the answer to your question as to how much time does the doctor spend with you, total, is minimal, run - fast! - to another doctor. (This is experience talking here, not just run-of-the-mill hypothetical situations.)
  • Do NOT go to a doctor ONLY because he is in your insurance company's network or he is "preferred" by your third-party carrier.  All too often, this doctor will unintentionally short-change you because there are quotas which need to be met and all sorts of corners which need to be cut when you have a third party, all because the bottom line is at stake. Third-party payers come between you and your doctor. In my humble opinion, you get what you pay for, but there AREexceptions to the rule.  Our family has made sacrifices and continues to give up a LOT of things in order to pay my doctor and medicine bills.  Priorities need to be made.  Our family's priority is the best medical care we can find, especially for me, since I have a 38 year history and a LOT, LOT, LOT of baggage.
  • Make sure the tests your doctor orders or does not order, are based on your doctor's clinical judgement, NOT because he is being pressured by the insurers or the government when it comes to making these decisions.  In other words, will the doctor fight for you or kowtow to those higher up the ladder.  When I had my tonsils taken out, it should have been an in and out thing.  No biggie.  However, I couldn't swallow anything at all, be it from the infamous ice cream to my own saliva.  My ENT surgeon fought my insurance company tooth and nail for what turned into a 5-day ordeal.  But do you see how you need someone who WILL take on the system?
  • It's a great idea when the doctor wants your records sent to him in advance so he can review all before you are seen.  This doesn't insure that he WILL indeed read all beforehand.  I was furious when I realized that a certain so-called specialist read my very complex history (which took a huge effort on our part to collect and put together) as I waited for him in the waiting room. And he still managed to get facts wrong in his follow-up letter.  Scary!  But see if you can ask around and find out if the info sent beforehand is indeed read well ahead of time.
  • Be prepared to pay out-of-pocket for the care that you need, no matter how complicated your case is, or especially if your case is complicated.  Oftentimes, several patients who have the same diagnosis require vastly different treatments based on the unique characteristics of each patient.  Don't be bamboozled by rhetoric that suggests that a treatment will work for you despite evidence to the contrary.  (See link for the scientific method.)
  • This is not the time to be politically correct.  A good doctor does not mind a frank discussion concerning your medical problems and he is not offended if you tell him that a treatment approach is not working.  If the doctor you have chosen gets haughty and defensive after you communicate with him honestly (and respectfully) find another doctor.  (Then see steps the steps above!)
  • When you see your doctor for the first time, try to be on your best behavior. This might sound insulting, but you'd be surprised at how rude some patients are. Newsflash: Most doctors would be happy not to see another fibro and/or ME patient ever again.  Hear me: EVER!!!  Let's face it, just about every other type of patient is easier to treat than we are. 
  • Too many of us who have CFIDS/ME/CFS and fibo, have a chip on their shoulders for various reasons: divorces, bad doctors, loss of jobs, financial concerns, a huge amount of pain and so forth.  Don't take it out on the world and don't take it out on your doctor.  Now if your doctor messes up with social niceties, and does a rotten job to top it all off, THEN I can sort of understand a bit of "speaking up." But try to remember you'll catch more flies with honey than with vinegar (sorry about the cliche).
And finally: don't give up.  It is your life, fight for it.

As always, hoping everyone is feeling their best, only better.  Ciao and paka! 

(Note: the sweet dog pictured above was a "healing dog" part of the "major medical center's" program to visit those who'd had surgery. More on that later if you wish to hear about it. There IS a funny story involved.) 

Wednesday, March 27, 2013

A Request...

Lately I've had more than a few people on twitter who have approached me about various aspects of healthcare, whether they be about my view of what I think should be done about a particular matter or my information as a "co-victim" or any number of other issues regarding health.  Normally, I enjoy "hanging out" with my twitter family, but lately I've found it a bit unsettling because of the advice factor.  

I love sharing with friends and getting to know people (not necessarily in that order) and I admit that I feel honored that anyone would want to know something of any substance from me.  But the other side of that double-edged sword is that at times I don't feel comfortable about some of the questions posed to me. 

I know that this might sound rather hypocritical of me when I have a blog dealing with CFIDS/CFS /ME and fibromyalgia and  touch on any number of other issues.  I have, however,  made it clear that I'm not a doctor. Furthermore, if you recall my vocality about how it makes me uncomfortable that doctors are on twitter, think how uncomfortable I feel talking too much about information as a fellow patient, though unlike a doctor, I don't have "better" things to do!  But I do try to let you know that the things I talk about are information, generalizations and my own life experiences.  However, things have become so uncomfortable of late that I thought it was time to state my feelings about twitter and make a request.  First the problems with twitter comments/questions.

  • As already stated, I'm not a doctor, and don't want to give out medical advice, only saying things like, "this is MY experience," blah,blah, blah," or I've heard this, read this.  Furthermore, I do have my good sources.  However, a doctor I am not.
  • I've said often enough that I'm techno-UNsavvy and half the time I don't even know where to find questions, resorting to my email account to find messages to me.  Sad, I know!  But old dog, new tricks... you get the picture!   Half the time I'm afraid I'm appearing rude because it takes me forever to find things addressed to me, or because I don't put hash marks in correctly, and so forth. I'm trying to get the hang of twitter, but talk about ulcers!
  • To complicate issues, there are only 140 characters allowed for any tweet.  Do you see how long my posts are?  Is there anyone reading my blog who thinks for a moment that I can answer any question in 140 characters or less, much less complex questions?  Good heavens, half the time I don't even know what the person on twitter means at all, or even which post someone is referring to.  I know I must sound even more idiotic there than I do here! 
  • With twitter, answers need not only be short but thought out, quickly.  With my comments here on my blog I usually read a comment and give myself a day to allow the reader's comment to gel.  I have Fibro-brain, after all.  We are most certainly not quick on our feet!
  • Furthermore, to put things bluntly, I will not engage in a p*ssing contest!  Sorry for the vulgarity but that gets the point across most succinctly.  On this blog, I let comments come through and except for obvious spam (for Rogaine, etc.) I let comments through uncensored.  On twitter, I'm not sure I even see everything addressed to me.  However, I am not going to get into a "debate" with someone on here nor on twitter if I make a comment and circular reasoning is given as a retort.  Frankly, I could care less!  I know when NOT to kick "gomno."  My mom taught me the principle when I was a kid.  You kick it and it will smell and get all over your feet.  It's not worth the effort because for some people nothing will ever be enough, they will simply go around in circles: a little like Omarosa on "Celebrity Apprentice."  Who wants to argue with her?  She is not worth anyone's time and energy.  (Except for "The Donald," perhaps.)
  • Finally, a little bit of respect is appreciated.  I had one person ask me which medicine I'm taking for something.  No "please," no "would you mind sharing," or any of the niceties that our moms or kindergarten teachers taught us at a young age.  Just "what medicine are you taking?"  As I've stated before, I do have a private life and there are certain things I don't discuss.  Furthermore, if I get to know someone, I may feel more comfortable about mentioning what I'm taking and other such questions.  But to make a "demand" without a please or introduction?  I'm not playing that sort of game at all.  No one should have to either! 

So, I have a request.  You know I love feedback and comments.  I absolutely love them.  But please, if you want to discuss an issue, make that comment here on this blog and not on twitter.   For all the above reasons, there is just no way that I can even begin to comment on some of the issues when I get a 140-character message, which is complex and often incomprehensible - and be expected to answer back in 140 characters. For those who are unable to comment here, because of whatever computer problems, my Facebook page is another way to go - at least there we have more than 140 characters to put across a thought. 

I have no problems with anyone asking me if I can cover a certain issue or suggests a topic for me to address. If I can do it, I'll do so.  Or, if a comment to you is too long and complex, I can write a post as a reply, as I've done on at least one occasion.  But twitter is just too much for this old bag... in fact it's too short for anyone when it comes to serious and complex issues.

Sorry, but it's the only way I can see myself as being responsible.  And I know that some of you who have been extremely wonderful in the way you've asked me things, will immediately think that I've got you in mind, and that's not the case at all.  Passing the time of day, so to speak, is fun.  Being supportive of one another is wonderful.  Laughing together about silliness is a joy.  It's just the rest that becomes a problem....

As always, I hope all are doing their best, only better.  Ciao and paka! 

Sunday, March 24, 2013

It Can LOOK Like Fibro...

Trust me!  

Chances are that if you are reading my blog you are interested in fibromyalgia and/or CFIDS/ME/CFS.  You might even think that you or someone you know has fibro.  Complicating things, however, is that for many reasons, all too many people out there are being forced to make self-diagnoses, be it because of not finding the "right" doctor, not getting access to the "right" doctor, finances, or even not feeling well enough to get yourself into a doctor's office because of pain and/or fatigue.  (Oh no! Is this post going to be full of "and/or's"?)

However, that being said, as with every illness and/or disorder out there, a diagnosis of fibro and/or CFIDS is not one that can be made by the patient alone.  There's an old saying, "a doctor who treats himself, has a fool for a patient."  Actually, it was Sir William Osler, considered to be one of the greatest doctors of modern medicine and familiar to those of us with CFIDS, who penned that old adage.  We know of him because of the classic book by Hillary Johnson on CFIDS, Osler's Web.  If you're interested in it, this link provides an excellent review of the book.  But to get back to the matter at hand...

The same adage of a doctor and a fool goes as well for the layman when it comes to diagnosing his or her problem.  An accurate diagnosis is essential because without it proper treatment can't be obtained. Fortunately, there are criteria that enable your doctor to make an accurate diagnosis of fibromyalgia.  The American College of Rheumatology (ACR) published the first criteria in 1990 and proposed a new set of criteria in 2010.  So, why do I bring this up (again)?

There are conditions which cause widespread pain but are not, indeed, fibro.  If some of these conditions aren't accurately diagnosed, the patient may die prematurely, go blind or require kidney dialysis.  Here is a short "for example" list of some of these disorders.  

  • Polymyalgia Rheumatica (PMR): This is an inflammatory connective tissue disease that causes the patient, typically over the age of 50, to hurt all over.  However, it differs from fibro in that a blood test - an erythrocyte sedimentation rate (ESR) - is abnormal.  Routine blood tests like the ESR, on the other hand, are normal in fibro patients.  If left undiagnosed, PMR can lead to a vasculitis, which can cause blindness, heart attacks and kidney failure.  Needless to say, you don't want to miss this diagnosis!  Yet how easy would it be to think you have fibro.  PMR should absolutely be ruled out. 
  • Early Rheumatoid Arthritis (RA): In its early stages, RA can cause widespread pain without the joints being visibly swollen.  RA can be diagnosed with the use of diagnostic criteria published by the ACR.  The earlier a correct diagnosis of RA is made, the better the chances of significant crippling being prevented.  The patient who mistakenly thinks she has fibro, but really has early RA, is at a big disadvantage in getting timely treatment and may actually suffer permanent joint damage as a result.
  • Systemic Lupus Erythematosis (SLE): This serious, often life-threatening, disease has been called "the great imitator."  Left undiagnosed, a patient with lupus can suffer significant kidney damage, permanent neurological deficits and may actually die prematurely from heart, lung, or brain involvement.  Again, there are accepted criteria for the diagnosis for SLE.  You don't want to miss this diagnosis either.  

What makes things even more complicated is that none of these diseases, including fibro, are disorders that only exist as single entities.  As I've pointed out in at least one previous post, a patient can have lupus and fibro, for example.  

My rheumy and I have spoken at length about this.  (Actually, I think he's about ready to take me out back and shoot me!)  Be that as it may, the bottom line is don't be your own doctor.  Get an accurate diagnosis and appropriate treatment.  

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

(And I've actually written a short post!  Yay me!  I'm a slow learner but....)

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Friday, March 22, 2013

Friday Tidbits: Naps & Sleep

This "child" knows to take a nap when need be and for just how long! (Knock on Wood!)

Those of us with insomnia, the legacy of CFIDS/ME/CFS and/or fibromyalgia, are often made to feel as if we are at fault if we ever have the "nerve" or gall to nap, much less sleep, during the day.  We are not just taught that napping or sleeping during the day is a sin, but that it's the mark of a lazy person, a person who wants attention, and any number of other insulting accusations. 

When hubs and I started the sorely-needed remodeling of the house (eons ago) and were getting all the details worked out with the contractor as to which weeks and days would be best, the hours workers would be coming in and leaving, and all the little minutiae that ends up being a sort of Mt. Everest,  the glaring fact of my illness was obvious.  What wasn't obvious, however, was that I suffer from severe insomnia and never know when I'll be able to fall asleep or if I'll be able to sleep.  After all, I live my life going 24-72 hours without any sleep on a regular basis.  The house practically sings "Hallelujah" when mom finally falls into a sleep and quietly, VERY quietly, rejoices. 

I know that the contractor wasn't being mean nor nasty when after one of our long planning sessions he said to me, "so, what's this insomnia all about?  You sleep during the day and stay up all night?"  Oh, if only it were so easy!   Of course, his words weren't  meant  maliciously.  Good grief, we hadn't signed on the dotted line yet and so you can bet your bottom dollar (or quid or franc...) that he was on his best behavior when he made this "innocent" statement.  He had absolutely no idea that he was hitting a sore spot.  

I felt like saying something nasty in reply - not because of him per se, but because he was just one too many people in too short a time period to say the same thing.  I know that it's difficult to understand what my sleep is like - or not like.  I've even had a neurologist who labeled my sleep as "malignant insomnia."  He was technically wrong about it being "malignant insomnia" because that sort of insomnia is now considered to be genetic, fatal about a month after onset, though if you do extensive research on the subject, it's still a murky area.  What my neuro meant when he called my insomnia "malignant" was that my insomnia was killing me off slowly.  For example, the reason for my body's inability to produce Human Growth Hormone - without which I would and almost did die - was due to the insomnia.  Even all the medications that I need to take because of my severe insomnia (which don't work much at all) will shorten my life by a lot.  (Don't worry: I have a family history of people who, if they should die before the age of 91, everyone mourns that the person was way too young to go!!)  And so it goes, on and on and on...

Furthermore, the reasons for sleep disorders are varied.  Yes, there are five major categories of sleep disorders which have been defined by the Sleep Disorders Classification Committee of the American Academy of Sleep Medicine.  What is cruddy is that unfortunately almost all CFIDS and/or fibro patients get most of these five categories at one time or other.  Lucky us! 

  1. Disorders of initiating and maintaining sleep (insomnias).
  2. Sleep-related breathing disorders (sleep apnea).
  3. Disorders of excessive somnolence (hypersomnias).
  4. Disorders of the sleep-wake cycle (circadian rhythm sleep disorders).
  5. Dysfunctions associated with sleep, sleep stages, or partial arousals (parasomnias).

In fact, I've been to more sleep specialists than I can remember.  I've had sleep studies - the last was ineffectual since five minutes (count them, just five!) were needed for anything to register on the monitors, but I couldn't seem to accomplish even that.  The last neurologist, who has known me for about 30 years, some years as a patient and some years as a family friend, is rather good at what he does.  He's had patients whom he has sent to NYC and to Stanford or Johns Hopkins and those neurologists have called him and said, "why do you send us these people?  You know that if you can't fix it, no one can."  He's helped people who could only get 7 minutes of sleep at a time.  He was so sure that he could fix me but one day, after a few years of going to him, trying someone new, going back again, and repeat, he finally threw up his hands and said, "OK.  I admit defeat.  I don't know what to do or if anything can indeed be done, but your options are..." and he proceeded to name five major medical centers known for their work in insomnia.  Irony: I was and have been too sick to go for the work-up and sleep study so far from home and for sleep studies that are done in such a cruddy way that they yield little or no info on really serious sleep disorders.  (Another post, my lovelies!)

Further irony, the one neurologist who was the "golden boy" in my history, that is, who helped to diagnose me after so many years of all the problems which would become known eventually as fibromyalgia and CFIDS/ME/CFS, now lives in the DC area again.  As a young doctor, he testified before congress about the brain damage done to boxers, an indication of what a smart cookie he is.  He moved from our "town" to another for multiple reasons, but we remained good friends until life got in the way: children born, living miles away from each other, and so forth.  

Hubs and I have been so desperate in the last year or so that we finally contacted my "hero" neurologist to see if he could suggest a good sleep specialist since things were getting so out of control.  Our hero asked for my medical charts to be sent to him in order to see what has been happening to me in the last almost 20 years since I'd last seen him.  (Can you imagine how many records were gathered and sent???  Scary!)  Instead, much to our delight, this neuro not only agreed to see me, unofficially since he is head (read employee) of a top hospital in the DC area and there was no way that we could get me to be seen officially, so informally, staying at his home was presented as an option.  The shocker was that in talking to hubs, our neuro realized how incredibly severe this insomnia problem of mine had become and offered to come to our house for the weekend to do his magic here, knowing how stressful a trip would be for me.  Talk about house calls (5 hours away!)  Don't we all need doctors like that in our lives?  

But finally, today on the news I heard a story about how good napping can be.  However there were time limits set which would differentiate just how long these naps should be in order to be helpful rather than making you feel lousier, as often happened when "power naps" came about.  Knowing my "golden boy" as well as I do I am sure he would have insisted that I sleep whenever it is possible for me to do so - he has such great instincts and is so attuned to his patients that it's almost spooky! - not having to worry about being called lazy or strange since lack of sleep is associated with many dangerous health problems.  Even napping can be beneficial and according to sleep experts there are several ways this can happen.  

  • The most beneficial naps during the day tend to be short because if you sleep less than 20 minutes you don't enter slow wave sleep and once you awaken you don't feel groggy.  (This is also known as a "power nap.")
  • Even though naps under 20 minutes don't have the effect of a good night sleep, you still get benefits such as improved mood, concentration, alertness, and motor skills. 
  • A nap of 45 minutes can help improve the brain's sensory processing and creative thinking.
  • If you are lucky enough to get a nap of 90 minutes, you will have had time to go through all the stages of sleep and won't wake up disoriented.  

The above recommendations and observations are for healthy people who may have not gotten proper sleep for a few days or even a week or two, due to family problems, financial worries, scheduling problems and the like.  Imagine how much more important and pertinent this is for patients with severe insomnia.

So sleep on, babies!  Get it when you can!  

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

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Thursday, March 21, 2013

Medical Political Correctness Gone Wild

Happy Birthday to my sweet daughter!  You, my dear, are alive and well, after a h*ll that no one should ever have to go through.  It was because of you that I had the courage to start this blog adventure of mine.  It was because of your encouragement and belief in me that convinced me that perhaps I did have something to contribute to the world after all.  It was your courage that said, "Heck, yeah, you can write about me, I trust you!" that spurred me to write about the good, as well as the bad, in what is going on in medicine today.  You have been my encouragement since a tender age, even when I would say, "I'm the mom, not you!"  I forgot that I had written you a special letter when you started college, but you showed it to me one day years later when I was really upset with you about some trivial mother/daughter "thing."  I was shocked that you always carried it around in your wallet.  You told me that it had, indeed, gotten you through a lot of bad days.  The corny line that got you through the most however?  I'd written that "you are the wind beneath my wings." (Good grief!  How corny can a mom get?  Evidently, very!)

And so this post is dedicated to you because no one should ever be treated the way you were when you became so ill so suddenly.  And I am ever so proud that you were able to make it through what the rest of our family is still horrified about.  In your honor I started this blog and in your honor I want to write about that which unites us both on yet another plain: that of both of us having to survive some pretty horrid hospital experiences, ones which are just wrong and should make us stop, think for a moment and wonder, "is this what we want happening in our country?"

And so here we go...

Every doctor practicing today had to take quite a few science courses in college in order to get into medical school. This is a given.  Right?   Right.  Then why is it that many doctors are making decisions not based on the scientific method but rather based on whatever is politically correct at the time?  

As we all know, the scientific method is simple - but also effective - in establishing correct theories about science in general and medicine in particular.  First, one states a hypothesis and then observes what happens in the real world.  If the hypothesis explains the observations, it is a good hypothesis and stands until it cannot explain future observations, in which case, a better hypothesis is made. 

What is never done in good science is to ignore the facts in favor of keeping a belief or theory.  No matter how much you believe in a particular hypothesis, if the facts don't agree with it, you have to junk the hypothesis and get a better one.  Believing in a theory and ignoring the facts is worse than throwing out the baby with the bathwater.  It is throwing out the baby and keeping the bath water.
So what does this have to do with anything? 

Over the past few years I have personally witnessed political correctness trump good medicine and have read about health plans pushing treatments for various medical conditions, this despite good medical literature showing that these treatments don't work. (Note: in medical lingo, "good" means what we in the real world think of as "excellent.")  Here are some examples:

1. It is known that cognitive behavioral therapy (CBT) does not work for many patients with CFIDS/ME/CFS, particularly for pain and fatigue.  However, from what I read it is the preferred treatment by many third-party payers, probably because it is relatively inexpensive as opposed to, let's just say, Ampligen (poor, poor Ampligen which people have been trying to get through since the 1970's!) which HAS helped certain subgroups of CFIDS patients.  Furthermore, I personally think that it's a cop-out for doctors who have NO idea what to do with those severely affected by CFIDS.  And I do mean "cop out."  For shame.

2.  Similar to CBT in its ineffectiveness in helping CFIDS/ME/CFS patients is graded exercise.  However, graded exercise can actually make CFIDS symptoms worse since many CFIDS patients cannot tolerate exercise and their fatigue and decreased stamina worsen after attempting a graded exercise program.  Yet graded exercise continues to be touted as a legitimate treatment for CFIDS and is preferred by third-party payers. (Again, no better ideas, but let's give patients "something," even if it hurts them: let THEM be the failures and not "us.")

3. Aerobic exercise has been shown in some studies to help fibromyalgia patients.  However, one must understand that any fibro patient capable of exercising on such a level probably does not have severe fibro. When a patient with severe fibro, who may often have serious co-morbidities, such as growth hormone deficiency or DHEA deficiency, tries to do aerobic exercise and fails because of very low stamina that patient often feels like a failure and, to make matters worse, may be called "noncompliant" by the physical therapist or the doctor.  My rheumy told me that one of the first things he learned in medical school is not to blame the patient, but that is exactly what happens in this situation.

4. To make matter worse, too many medical practitioners often ignore the medical literature and when studies are brought up for discussion they often get defensive or are completely wrong...

  • When my daughter was extremely ill and dying, in addition to everything else going on, she started having severe myoclonic jerks right after her emergency life-saving surgery.  I asked her consulting neurologist, a full-blown attending at a "major medical center," one of the very best in the US, about her being prescribed Klonopin (clonazepam) to treat the jerking.  To my surprise and horror I was told that Klonopin CAUSED jerking, which is an absolutely false statement.  Given that I was still new at this "game" of digestive illnesses, the fact that I was still reeling from almost losing my daughter, and that I thought that surely I had my information wrong, I didn't question the doctor at the time but filed it away immediately.  Guess what: he was indeed wrong!   Klonopin is useful in seizures and in preventing myoclonic jerks.  I should have said something: after all, I've been taking Klonopin for nearly 20 years, yet I allowed this bozo to bully me.  Obviously, THAT wouldn't happen again.  In fact, it didn't happen again for the next five or six hospitalizations, which followed and I heard awful information, such as....
  • My daughter had had issues with her liver for many years -not from drinking, I assure you, as some doctors had insisted on believing before reading her history in the chart.  One day at the "major medical center," a doctor asked my daughter why she hadn't taken Tylenol for her pain.  Was he insane?  She needed REAL painkillers! Furthermore, if the huge amount of painkillers she was already on weren't taking care of much of the pain, what the heck was simple little Tylenol going to do?   But what was worse: I looked at him dumbfounded and finally said, "is  it wise for her to take Tylenol, given her history with her liver?"  He looked at me and said, "Oh those studies of liver and Tylenol have all been over-inflated.  We don't find it to ever be a problem."  Was HE on drugs?  (And I don't mean the legal kinds either!)
  • The medical literature is very clear about the protective effects of cigarette smoking when it comes to Ulcerative Colitis (UC).  Our local gastroenterologist had no problem discussing this fact with my daughter, my husband, and me but since the she was getting progressively worse by the hour, her GI insisted that it was time for her to be sent by ambulance in the middle of the night to a major medical center for a definite diagnosis and for treatment.  He, our local guy, who had trained with some of the best of the best at the "major medical center" had no problem seeing that there could be a correlation with the fact that she had stopped smoking just days before she showed her first signs of the illness, which led within a few weeks to her almost dying several times.  Her illness was a vicious, never-seen-before sudden onset hybrid of Crohns and UC but he honestly believed it was Crohn's and even said to her, "if I thought for a second that it's UC, I'd have you outside right now with a cigarette, but I really think it's Crohn's."  (Paradoxically, Crohn's is made worse by smoking, according to most, if not all, literature.)  After he had dispatched her to the "major medical center," seeing that she was SERIOUSLY ill, the various attendings would call it UC one day, Crohn's the next.  When I finally pointed out the smoking and UC correlation as perhaps a clue to what was going on, I wasn't just rebuffed.  I was looked at as if I were Satan incarnate and told I was crazy.  Really! 
  • It became quite convenient that two years later, once the nicotine patch was really "big," her newest GI physician at the "major medial center" suggested that she use it.  Ah!  Smoking but not smoking, if you get my drift.  Suddenly, nicotine was considered a factor and part of the treatment. 
My point is, how can good medical care be provided when legitimate medical findings are ignored and the scientific method is cast aside because of political correctness?

Russia was ahead of the world in the beginning of the 20th century when it came to genetics.  However, because of bolshevist/communist philosophy, where ideology wanted to ignore that "brains," for example, can be hereditary, genetics was called "the whore of capitalism," was thrown out the window, the proberbial baby with the bathwater.  I was shocked to learn this when I stayed in Kiev with family friends, where both husband and wife were physicians.  They couldn't believe how much knowledge I had of medicine in general and genetics specifically.  They'd brought out a genetics book for me to see, published now that the former Soviet Union had just fallen apart.  To my horror and their delight, I knew more of the conditions shown in photographs (such as progeria, acromegaly, etc.) than they did.  Let me assure you that this was NOT because I'm smart, but because I watched a LOT of Phil Donahue.  

This is what scares me.  Because of medical political correctness, will our country suffer the same sort of fate as what happened in the Soviet Union under Stalin?  

Anyway, this is my Happy Birthday post to my sweet, smart daughter of whom I'm so proud.  (What's a birthday greeting without the mention of Stalin?  Joke!)  V: you'll always be the wind beneath my wings: corny, but true. Thank God that you got to the "major medical center" and had a fantastic surgeon.  But thank God also, that you survived - despite some really cruddy so-called physicians.  May you live for many, many decades, happy and healthy!  You bring so much joy and goodness to so many. Happy Birthday and Многая Лета!

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

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Monday, March 18, 2013

Lupus & DHEA

About four weeks ago, I wrote a post about hormone deficiencies in fibromyalgia, specifically Growth Hormone and DHEA (Dehydroepiandrosterone).  I made a point of mentioning that levels of these hormones, or their by-products, are usually measured by blood tests and that these hormones are prescribed when deficiencies are discovered. However, because I've realized via twitter just how many lupus patients also have fibromyalgia and because for various reasons, lupus has long been on my personal radar, my ears perked up when I discovered that DHEA is used in lupus, though differently than it is where fibro is involved.  In other words, DHEA is "different" for lupus treatment.  When I heard my rheumy say that DHEA is prescribed for many lupus patients without a base line blood test for DHEA having been drawn, I was hooked, not to mention almost shocked. The "almost" with "shocked" is added only because really, with lupus, not much is "normal" at all.

To get back to the DHEA matter, I also found this interesting since too much DHEA can cause facial hair growth and acne, side-effects which are quite undesirable for women. In that earlier post when I mentioned that I'd been on and off of DHEA for a few decades (link), in the interest of brevity I didn't mention that I know my DHEA level is getting too high and that levels are now "fixed" until my next major health crisis comes along by the much increased peach fuzz on my face.  Being practically hairless on my face, it's a shocker to see anything show up in the "beard" area.  Actually, you'd think that when I have no "peach fuzz" whatsoever, it would be signal to me that my DHEA is low, but we're talking about moi here, the "queen of no short-term memory," after all!

But back to DHEA and lupus.  Unfortunately for the female of the species, it is women who tend to get lupus far more often than men.  (Yes, walk into a rheumy's office and you see about the same female to male ratio as you get in the audience of "The View" - or in an ob/gyn's office for that matter: take your pick!)  Normally, when a doctor prescribes a hormone to someone who is deficient in that particular hormone, the doctor prescribes it to make up for a deficiency.  Pretty straight forward here, right?   However (and you just knew a "however" would come sooner or later!) when it comes to women and lupus, DHEA is often prescribed to them even though they may actually have normal levels of DHEA.  Interestingly enough, DHEA is ordered for them without blood levels having been measured, in which case the DHEA is intended to act like a drug (medication).   Consequently, the DHEA in lupus has effects beyond simply maintaining the body's hormone balance. Why do they do this, pray tell?  At first glance, it would seem so irresponsible and reckless!

It all comes down to the effect of sex hormones on patients with lupus.  The more "female" a woman is, the more likely her lupus is going to be severe, and possibly life-threatening.  This "phenomenon" became known over 30 years ago when animal studies were done and data collected.  There is a strain of mouse which develops pathology that is almost identical to lupus in humans.  These are NZB/NZW (New Zealand Black/New Zealand White hybrid) mice, which have been extensively studied in order to gain insight into lupus in humans.  When the ovaries are removed from the female mice and the mice become less "feminine," they live longer and have less kidney disease than their female counterparts.  On the other hand, if the testes of the male mice are removed, they die sooner than their male counterparts.

The same pattern holds true with hormone injections.  If you give male hormones to the female mice, the development of lupus is delayed and they live longer.  If you give female hormones to the male mice they die sooner because they get lupus earlier than their male counterparts.

DHEA is made by the adrenal glands of both men and women (humans).  But men typically have much higher levels than women until advanced age.  That being the case, medical investigators decided to treat female lupus patients with DHEA to make them less "female."  It seemed to work and lupus patients receiving DHEA seem to fare better than they did before they started getting their DHEA.

It actually made a lot of sense since those women with lupus who became more "female" by taking birth control pills or becoming pregnant faced horrible complications due to lupus flares.

Before I get into the home stretch of this post (hallelujah!) I would like to point out that in the case of DHEA and lupus, not only should you discuss this with your physician because there are a number of circumstances that would preclude you from taking DHEA.  Furthermore, the DHEA should be bought from a compounding pharmacy to insure the highest quality preparation possible, vis a vis, consistency and excellent bioavailabily.

Here is a prime example of a hormone being used as a medication to treat a disease instead of a supplement to normalize the body's hormone status.  Even though some of the women with lupus receiving DHEA develop facial hair growth and acne, most would prefer these side effects to having a miscarriage or needing to go on kidney dialysis.  Moreover, an added bonus of taking DHEA for lupus is that the disease becomes more easily controlled, allowing the patient to often get by with less medication, including prednisone and it's humongous list of potential side-effects. 

Even though fibro is found in more women than men my rheumy told me that the only time he uses DHEA for fibro patients is when they are indeed deficient in it.  Of interest is that my rheumy has actually measured DHEA in his lupus patients.  Many of these unfortunate women were found to have no detectable DHEA in their blood.  So perhaps giving DHEA for lupus without testing isn't so crazy after all.  It seems to get results.

And you wonder why I find lupus fascinating?

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

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Sunday, March 17, 2013

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!

Friday, March 15, 2013

Friday Tidbits: Chronic Pain & Magnesium

"I won't let it go until I understand why...."

Are you always searching for different ways to deal with the pain factor in your life?  Recently, a reader asked if I could write a post dealing with how to handle flares. I did so and mentioned that taking frequent baths with salts which contain magnesium are quite helpful.  

I think a vast majority of those of us with painful conditions already know that magnesium does a lot of good, but do we understand why?  Well, today I thought I'd try to explain some of the reasons magnesium is such a powerhouse in the CFIDS/CFS/ME, fibromyalgia, myofascial pain and lupus departments.  I don't know about you, but skeptical me always finds explanations fascinating, not to mention that I follow these hints much better if I understand, at least partially, the reasoning - the why or how.  The SOMETHING!

As we all know, patients with CFIDS/ME/CFS (very) obviously have problems with fatigue and decreased stamina.  While researchers don't have all the answers regarding the causes of these troubling symptoms, an article in a British nutrition journal may give a clue as why these symptoms occur.  

If  you think I'm a skeptic?  Try the medical establishment.  Considering the doctors/researchers don't ever believe one another and find that they just have to experiment for themselves to see if they can prove "otherwise" than what someone has just found, believe me, then you can get some high drama, not to mention better understanding. (Whoops! Too obvious?)  

In 1994 researchers found that patients with CFIDS/ME/CFS had low levels of magnesium.  However, they used a particular test to determine this.  As opposed to the usual serum magnesium test, they decided to use the Red Blood Cell (RBC) magnesium tests.

Most doctors, when measuring a magnesium level in a patient, will order a serum magnesium level and this is unfortunate.  The serum magnesium level test is not as accurate in determining the amount of magnesium in the muscles and other tissues as with a RBC magnesium test.  The authors of the study found that the RBC level of magnesium was significantly lower in the CFIDS/ME patients than in controls. Because fibro and CFIDS often occur in the same patient, one researcher wanted to know if patients with fibro, but without CFIDS, were also low in magnesium.
My rheumy told me that when the observation that RBC magnesium levels were low in fibro patients was first presented at a medical meeting, the finding was met with some skepticism.  That led to another researcher looking into this issue and much to his surprise, he came to the same conclusion.  

However, instead of doing a direct measurement of RBC magnesium, he performed a "magnesium loading test."  This involved giving a lot of magnesium intravenously to the patient and then collecting urine over the next 24 hours to see how much magnesium was in it.  Lo and behold!  There was no magnesium in the urine specimens.  Those fibro patients sopped up the IV magnesium like a sponge because their bodies were just that deficient (low) in magnesium.  

Over the next few years, four more studies were done, two by each researcher, examining the magnesium status of patients with other chronic conditions aside from fibromyalgia - such as lupus, myofascial pain syndrome and the Eosinophilic Myalgia Syndrome. (Yes! Lupus!) The researchers took great care in making sure that none of those patients had fibromyalgia.  What all these problems had in common was chronic pain. (Yes!  Lupus!)  Therefore, a link between chronic pain and magnesium was established.  

What is even more interesting is that another study showed that pain threshold is proportional to the magnesium level.  In other words, the lower your magnesium, the more you are going to hurt.  

Thanks to these skeptical and competitive researchers, we now know that magnesium is necessary for proper muscle function and is a co-factor in the synthesis of ATP, a chemical that is directly associated with the energy level in the cells and in the body as a whole.  (This is only a Cliff Notes version re ATP!) 

So, what are those of us suffering chronic pain and/or lupus to do? 

  • Know your RBC magnesium level. (And yes, that means the RBC level of magnesium!)
  • Understand that your level may be in the "normal" range, but that "normal" range may not apply specifically to you since the range is a statistical construct based on the general healthy population.   
  • If your RBC magnesium level is below average you might want to discuss this with your doctor (ASAP).
  • Be careful what magnesium pills you take since magnesium is a component of many laxatives, including Milk of Magnesia.  (Duh!- re the Milk of Magnesia!)  Taking a sustained release (or slow-release) magnesium preparation is probably the best way to go if you are going to take magnesium supplementation. 

Patients with CFIDS, fibro, myofascial pain and lupus often have little control over their illness but the body's level of magnesium can be something that you can control and improve if necessary.  By rectifying a magnesium deficiency you can have some control over the pain and fatigue that accompany these illnesses. It's not a cure, but it can improve quality of life in some patients.

As always, hoping everyone's doing their best, only better!  Ciao and paka! 

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss anything.  It's easy: see the directions on the 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 it's a firm promise!) 

Monday, March 11, 2013

Brows & Lashes with a Few Helpful Tips

A few essentials for the CFIDS/ME/CFS and Fibro survival kit

It's now Monday and I've been through my roughest weeks continuing into the roughest weekend which I've had in quite some time.  That includes the dastardly emergency-gallbladder/gallstones-surgery-with-pneumonia-on-top-of-it-all episode.  But hallelujah, I did indeed make it to my hair stylist/colorist.  She's an amazing talent who can work miracles for those who are follicularly-impaired - thinning hair, bald in some spots and just all sorts of things happening that shouldn't happen to any woman!  But what can you do? (Get someone like my Diana!)

I'm beat, exhausted.  The color of my lips fluctuates between white and blue, I'm experiencing pain where I've never known pain could occur - now that's a comforting feeling since how many more places can there possibly be?  (Hmm...how and why DOES that keep happening?)  Enough describing?  Do halt those tears on my behalf.  I know: pathetic, pathetic, pathetic.

So enough complaining: on with the show!

My the brow and lashes lady did a magnificent job.  (Again: how DO they do it?)  I finally - and again - have two distinct brows I can follow, embellish, not even do nothing at all to them if I don't feel like it.  For me, at least, my brows don't need to get color as often as lashes, but if I ever get the energy to do so, I would love to go in for lash tinting and brows alone, frequently.  The lash tinting can last to about six weeks depending on how often you wash your face, exfoliate the face, which products you use and so forth.

By the by: while tinting eye lashes is quite commonplace in areas such as Asia, there is a bit of controversy surrounding tinting of lashes here in the States.  It took me a few years to get the nerve up to make that move to getting my lashes done.  I'd first seen it done in Australia, in the tropics where women do NOT want to put makeup on but  - well, know that they need it?   And a note: do NOT try this at home.  You REALLY do need a (great) professional doing this! 

What I also love about the tinting/dyeing of brows and lashes is that once the lashes have had a few treatments the eye lashes actually thicken because of the build up of color.   I find that it really lasts for about six weeks once you've given your lashes a good "foundation" and had them done every four weeks in the beginning then taper down to every 6-8 weeks once there's a little more "body" with the lashes.  Oh I do know how ridiculous this sounds.  But we aren't all blessed with thick brows and visible lashes so "blondies" need to do so much more work.  Furthermore, we who have CFIDS/ME/CFS and fibro can thank these illnesses for the hair sparsity, which becomes a monster of a problem if you happen to be lucky enough to also develop thyroid problems. 

In the end - FOR ME - tinting and dyeing is a time and energy saver in the long run.  At the moment my brows hairs are a nice brown.  But eventually brows hairs fall off and new hairs grow back in, though in white, while in other places the color wears off.  Too soon finding the "hairs" among the peach fuzz will again become another treasure hunt every time you choose to "fix" the face.

At any rate, I am crashing like never before.  Like I said earlier, this past weekend was a killer.  I rested, rested and rested and STILL ended up in worse shape than I've ever been.  

Therefore, my hair results will have to remain for another post.  I'm just too beat to go there.  (And I'm keeping posts on the shorter side, remember?)  I think that those of you with CFIDS/ME/CFS and/or fibro know how hard it is to post, especially when you're feeling worse than your "normal" self.  However we had some interesting observations/decisions to make: shave head or not and every permutation you can imagine.

OK, today I thought I'd add the following tips to make up for the lousy writing.  I know quite a few of you may know this already, especially because our Type A personalities dig for everything we can find.  However, just in case...

  • Use a hand fan when you run a fever, like I do at night.  In the above picture you see one of the beautiful Malaysian fans my daughter-in-law gave me.  (Thank you, F!)  I used them all the time when the night sweats suddenly attack me with no warning.  Places like Pier One Import used to carry these sorts of fans and I've heard that if you're lucky you may run into them at some point.  If so, grab them!  They're great!
  • Eye mask: the very basic eye mask at Drugstore dot com is absolutely fabulous.  It's not too tight, I doesn't have little areas where light can still sneak in. The fabric doesn't make me break out in yet more sweat.  I find that with the face mask I REALLY lose track of what day it is upon waking up.  6AM vs 6PM?   Easy to do.  You're in your own little world.  This isn't a sleep trick that works often, but enough times that I give it a try when desperate.
  • iPod: I've downloaded a lot of music that I can "handle," not a very common occurrence for many reasons.  But when it works, it works!  See link on music and hypersensitivity to sound.
  • Arnica: I don't understand why arnica has never really caught on here in the States since it's a "known" commodity in Canada, Great Britain and Australia. It's used for bruising and works incredibly well.  I happened upon it in a drugstore in Oz and couldn't believe how quickly a huge bruise on my son's toe, which had been there for a couple of YEARS, disappearEd, within a couple of weeks of using it.  Also, I bump into things a lot - or fall.  Consequently, I often find a bruise here and there.  Arnica, I've found, gets rid of the bruise VERY quickly.

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

(Note: I apologize for the mess this post was in before I fixed it.  It was "published" quite by accident.  The mess that happened between my brain being completely fried and my hand accidentally hitting "publish" is a saga in and of itself.  I have a feeling it'll go down on my "most embarrassing post list," which is indeed a feat.)