"Cookbook Medicine": Really?

I'm afraid I've fallen into that phase where I have so much to tell that, because I have no idea where to start, I've become paralyzed.  What a silly way to be!  I'm sorry it's taken so long to write a post in order to let you know about the colonoscopy, but I came home pretty sick from the ordeal of the recovery room and quite upset by what went on there.  In fact, I wrote an immediate account but realized I needed a few days to settle down and get over the unprofessional conduct of the recovery room, the out-and-and lies, the fights. Someone had to take the higher ground and I was determined it would be me. (Deep breathes: I'm still stunned!)  So, this post is not so much about my colonoscopy but the lessons I learned - or which were reinforced as a result of my experience - in the recovery room with doctors who seemed more like robotic technicians than patient advocates.  More on this in a moment.

First, the news which you, my friends, are waiting for: I'm clean!  I don't know what the fuss is about when it comes to getting cleaned out for the procedure, nor the fuss about the procedure at all.  It's really a piece of cake.

I do have two recommendations, however, for anyone who needs a colonoscopy: 

• Watch Dr. Oz get his colonoscopy (part 1 and part 2) at the very least - though there are other segments as well where one can hear his explanations.  Definitely see the the first part of his experience, however.  And then realize Dr. Oz is a man not used to being sick.  He complains of bloating, etc?  Please.  Easy peasy!  Though make no mistake: I have to give the man kudos for having done this service for the rest of us who need to go through the procedure.
• Prior to the procedure, read Colonoscopy for Dummies, available on line for free. There, important information can be found, such as, "can I wear makeup to the procedure?"  (And the answer is "yes," for those who wonder!)

The few days before I went in, I was in pretty bad shape, ME/CFS and fibromyalgia-wise, continuing with sweats (drenched bedding and nightwear), shakes, shivers, pain, ulcers on my tongue, swollen lymph nodes and the like.  In fact, my rheumy worried if I should postpone the colonoscopy, fearing what the "trauma" would do to my system once I got out of the procedure.  I wouldn't listen to such "nonsense," so he made me swear that once I got home I'd be on strict bed rest for a week, at the very least.  Since I was beside myself being so ill, I had no problems promising to rest.  I really needed to eliminate at least this part of my body as a cause of any sort of new health problem.

Let me make it clear: I had a terrific experience when it came to my own private doctor. It was the hospital system that I had problems with, much of which I'm not even going to go into at any point.  Why?  Because it is like beating a dead horse.  Period.

However, other parts I WILL address, if not here and now, then in future posts.  Why?  Because they are really important and we all need to be aware of the fact that these are problems that are too dangerous to our health.

The "fun part" I wish to address today came in the recovery room.  I woke up in no pain until ten minutes had gone by and slowly my BP started rising as the overall body pain started back in.  My abdomen, I should add, was in no pain, however.   Pretty soon my BP was dangerously high and I wasn't going to end up being discharged within the expected thirty minutes but only once my BP reached a safer number.  Unfortunately, the BP kept rising and rising.

And then the lying and arguing began.  I'd told the intake people, as well as the recovery room staff, that my BP was an indication of where my pain level is.  For many reasons, I have no anxiety from being in a hospital nor with any operations nor procedures.  Best, I was quite comfortable and trusted my own attending physician.  

However, as soon as the pain issue came up in the recovery room, the bull started.  First I was told (as in "threatened"?) that were I to receive any pain medication whatsoever, it would prolong my recovery room stay, delaying my discharge from the hospital.  I looked at the clock and realized that I'd now been there for at least fifteen minutes and that meant fifteen minutes to go.  I thought I could hold out as far as the pain went.

However, the pain and my body didn't agree.  The blood pressure and pulse rate were rising steadily.  When I pointed this out to my nurse, she, in a clearly disgusted voice, said that I was holding my arm the wrong way and shoved it.  The reading instantly came back even higher.

When I said that I needed some pain medication - the BP was now in the range that NO one would be sending me home any time soon - I was told the hospital no longer carried Demerol, a pain medication that had worked for me in the past.  I knew it to be a lie and told them so.  Important point.

To put things out in the open, I also pointed out that I was not a drug seeker, that they should read the chart (in the computers they'd spend a fortune on installing but no one seems to like - or read) and see what my BP has told them in the past, indeed why I was there in the first place (that the impaction had scared the beejeebees out of my attendings) and what medications I'd been on before.  By now,  nausea was striking hard. Thanks to the music playing over the loudspeaker and the light (glare) coming in through a window without curtains, I was now also getting a head migraine and the body migraine was quickly getting out of control.

Might I add, it seemed that the recovery room was designed with the staff in mind and most certainly not the patient?  Did I really need to hear pop music as I lay there, and then a DJ?  Worse, I couldn't even make out what the DJ was saying: it was all just much-unneeded noise.  But let's forget the patient.  

The same old bull, though on a higher level, began.  Another pain reliever was offered, a strong narcotic (fentanyl), which, unfortunately, had not worked on me in the past.   And so it went.  Another doctor was called in,  Dr. "Whiteman-not-foreign-physician" who - they must have thought, for what else could it be? - would have more influence than Dr. "Woman-and-worse!-foreign-trained-physician."  How bigoted can you get?  It reminded me of the incident in the ER when the charge nurse was afraid we'd object to a doctor with a ponytail and actually asked us if we objected to said ponytail.  

This doctor (Dr. "Whiteman") also said there was no Demerol in the hospital - they simply did not carry it any longer.  I told him I knew that to be a lie.  He, with a bit of shame on his face, admitted that the hospital DID have it but that he couldn't prescribe it.  I said, "No, you CAN prescribe it.  You simply choose not to.  You simply don't want to fight with the pharmacist in order for me to have it."  I also added, "since when have doctors allowed themselves to be dictated to by pharmacists?"  This is a HUGE bugaboo of mine.  I absolutely loathe that physicians have allowed the pharmacists to undermine the care of their patients.  In fact, I especially hate it because of the old joke, "What is a pharmacist? Someone who couldn't make it into medical school."  And it's been payback ever since! 

At this point, though I hated to, I asked for them to allow hubs to come back: I needed him to come in and fight my battle.  My BP was now in the stroke range and I was in way too much pain.

My husband and I were both appalled when we realized that the doctor had allowed a pharmacist whom we'd never met, nor knew his name, to dictate medical care from the shadows.  This pharmacist, indeed any hospital pharmacist in ANY hospital in the US, has no accountability for the care of patients.  That is the doctor's role.

My husband and I were dumbfounded, indeed our jaws dropped, when the doctor told us that he had to practice "cookbook medicine."  That was stunning.  The term "cookbook medicine" is a "somewhat" derogatory term, one I've actually used a few times in this blog.  I asked him, "have you no pride in your work?  What has happened to you that you feel no qualms about that term, indeed own up to it?"

I asked the doctor: 

• Since when have you allowed the insurance companies to dictate your medical treatment?
• Since when have you allowed the federal government to dictate the practice of medicine?
• Since when did you allow the corporation that owns the hospital to overrule your medical judgement?
• Since when did you allow the fear of having to justify your medical decisions prevent you from following your oath, afraid to explain to a board why you made such-and-such a decision?

How sad!  How defeated!  One can say, "is this the future of medicine"?  No, we were told in no uncertain terms that this IS medicine today.  Right out of the robot's mouth. 

I did get the Demerol I needed - in fact it had been ordered before the doctor used the term "cookbook medicine" in his defense, but "they" (the pharmacist?) took their sweet time about it - as my BP continued to soar, breaking records yet again.  Again I wondered, "What is my BP Trying to Tell Me?" as I looked at numbers I've never seen before.  But that last part about the BP is for a future post.

In the meantime, I hope everyone is feeling their very best, only better! Thanks to my very good friends out there who prayed for me and sent me such supportive emails, tweets, messages. I so appreciate y'all!  Ciao and paka!


(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper 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 fear not: it's a firm promise!)

The Mary Tyler Moore Show

After

Before

Before

Now what in the world could Mary Tyler Moore (aka Mary Richards for those who remember that iconic show) have to do with anyone who suffers from CFIDS/ME/CFS and/or Fibromyalgia, not to mention another couple of dozens of "invisible" and debilitating illnesses?  Well, bear with me and you'll find out - I hope!

As I wrote yesterday, I'm now living through the second scariest and most agonizing period of my entire life. Number 1 was, without a doubt, when we went through my daughter's ordeals for two years.  She had more near-death experiences than anyone should.  Now I'm living the 2nd worst time of my life.  In case you've forgotten (and who could blame you with fibro-brain going on?) I'm living through the scariest time in my life, from the CFIDS/ME/CFS and Fibromyalgia and all the complications involved, but also in just about every aspect in my life that I can think of.  As I mentioned before, in missing about five weeks of posting, y'all have missed out on a whole bunch of "good stuff."  Of course that depends on how desperately you want to know what's been going on.  (And I do so hope someone cares!)

It's amazing what people know about you and what they don't know.  My daughter was over a few days ago, bringing over some liquid detergent.  I'd run out of two and a half large bottles in about three days.  Daughter was a bit surprised that I was able to do the laundry, especially so much.  

Well.... blow me down!  She, who knows me pretty well, never knew about this quirk of mine.  There are two tells: one is pretty obvious.  When things get bad my green eyes turn blue.  When I get REALLY really angry, I am a cleaning fiend.  Combine that with....

OK.  Where's Mary Richards in all of this?  We need to go back to 1970 and thereabouts.

In college we would sit in the corridor huddled around a tiny TV to watch this amazing show of the woman we all wanted to be.  We wanted careers like Mary had, not the stuff that women were forced to do.  To put you into the era, my entering class was the second one to officially admit females.  The school had to "refurbish" a second dorm for us, evidently very quickly, running out of precious time.  How do I know this?  Well, when we arrived, all fresh, bright and bushy-tailed, we discovered that our huge bathroom had urinals in them (now THAT was interesting since I'd never seen one before!) and gang showers with no shower curtains.  (Try being big-breasted!  Those endowed tried to take 3AM showers for a smaller audience.)  

So, I hope that sets up the picture. Mary Richard was beautiful.  She had the perfect clothes, she had the perfect job, she had it all.  We all desperately wanted to grow up and be her.

During one episode Mary (the one in the TV, not any old Mary hunched on the floor of the hall) was upset about something, and it was a BIG upset.  Either Rhoda or Phyllis made a comment that when Mary gets upset she starts cleaning.  I loved the line and really never gave it another thought. 

So, back to the new age and the new decade.  My daughter comes over to the house and sees that there are a lot of things going on, but especially laundry.  At first I didn't understand why she was so surprised and didn't even give it a second thought.  But then my daughter said a few things that amounted to "I'm so glad you're taking this all so well and that you look good," yada, yada, yada.  

What?  Are you kidding me? In what world am I taking this well?  In what way could all this manic cleaning be a good thing?  

What no one's ever truly realized is that if I'm in a lot of pain I wash floors, cook, bake. They were "sort of" used to that premise though not really, if you know what I mean.  I've been doing this sort of diversionary thing since I was a little kid.  In fact, my mom would say, "children do not get headaches, they cause them." What's a kid to do?  So, I found coping mechanisms along the way. With child #2 I went blind in one eye for a couple of days and a neuro-ophthalmologist  (a rarity even in NYC in those days) told me it was a classic "migraine equivalent."  For the debate on that, this link re migraines will tell you about that little adventure.  

The neuro-ophthalmologist was amazed at my "diversion" tactics.  I can handle a LOT of pain.  Not bragging, just the truth.  In fact, when I see a new doctor, it's hubs or one of the kids who "squeal" that I can withstand huge amounts of pain. I feel like everyone says that and so I don't go there and am embarrassed when said family butts in with this bit of info. 

So, pain I can't tolerate: SPARKLING floors that a baby could eat off of.  Really.  (In fact we need a new kitchen floor and that isn't driving me nuts ONLY because I am at the end of my ropes in this awful stuff that's going on around me!)  

So my poor daughter sees that I'm doing laundry - I love doing laundry and rarely get to do it any longer - and thinks, "mom is doing so well!"   Oh, you little amateur, my baby. You know your mom not quite as well as you thought.  (Can I a put a "huh!" in there without sounding too petty?)  

You see, when I go ballistic, and I mean when it's a rage, sadness, fear, feeling that your own family doesn't understand, unbearable pain that's at the magnitude of a definite 10 but you want to say it's a 20, when I'm completely off the wall in pain with nothing helping me at all, I start cleaning walls, mirrors, play jack-in-the-box (popping in and out of bed, falling half the time), that means that you really do NOT want to mess with me. I'm using all my diversionary tactics.

I've always had a "thing" about cleanliness.  Up until I became a baby factory, I used to take three showers a day: in the morning to wake up and get all that filthy, disgusting dirt that you just know I picked up from the sheets that I just slept on (which were changed every other day), a second shower once home from outside (can't blame me for that!) and a final (number three in case you've lost count), to make sure I'm going to bed clean because it felt so good.  

I vacuumed a not small house every single day, even when I was overdue for baby deliveries, while my mom would practically have a heart attack that I was doing such disgusting things. She also thought it completely immodest and perhaps immoral to be out in public once I was about 6 months pregnant. Yes, it WAS a different world!

So, I had to explain to my daughter how this works.  

Thus far, every pillow in the house has been washed.  That's four beds with at least 4-6 pillows on each bed but for the twin bed with only three pillows but lets not forget the "extra pillows" for when you need different pillow(s) for who knows WHAT reason!  The down ones need to go to the cleaners but I need someone to take them. I have washed every single pillowcase, pillow cover, sheet, duvet cover.  I've washed almost every T-shirt, leggings, nightgown, pajamas and any other article of clothing you can imagine but for the ones that need the cleaners. 

I'm now into the many, many tablecloths and cloth napkins.  (I'm crazy in setting a great-looking table....we all have our vices, admit it!  Come on... it only hurts the first time!)

I've emptied out closets.  I'm organizing jewelry.  I'm organizing makeup (how embarrassing...lipstick story is for another day!!!).  

I'm throwing things out right and left.  Of course, only after enough suffering on making that decision.  It doesn't get thrown out if there isn't enough ANGST.  I do have an excuse for that, however: I am deficient in the "throw things out" gene.  I always throw things out that I end up needing.  I'm still grieving about a purse I threw out twenty five years ago! Yes, yes, I know it's time to get over it, but..... try to see it from my side! PLEASE! (LOL!)

Today daughter stopped by to tell me that she's too tired for Dancing with the Stars and could we hold off another day (tomorrow) to watch it?

And she STILL doesn't understand the premise here.  I am royally upset, ticked, afraid, sick and so many, many other things that only a bucketful of miracles and prayers can turn things around.  And yes, my friends here, on Facebook and on Twitter... I am so very much indebted to you.  Never let anyone tell you that Twitter is a waste of time.  Not only have I made some really wonderful friends here but the support has been incredible (to be gone into at a later date.)

So, as a tease I will write down what I plan to cover, if I can get the "energy" for it:

• Yesterday I couldn't take it with the gardening and will report on that front for all the spoonies out there who love gardening but have had this pleasure taken away from them due to stupid illnesses.
• I plan to write about the 'diet" (way of eating) as requested by a few people on twitter.  I've been putting it off because I barely know where to start but it's the right time for it now... if only I can get my head around it.
• There were the insane ER visits a couple of weeks ago that have got to be heard because this is hitting not just in my geographical area but is taking place all over the US and it's frightening. 

And so daughter understands me a bit better now.  You can't blame her for not knowing this.  How often does this cleaning diversion take place to the laundry and closet level?  If we're lucky, it's about once every few years.  But you get to the point that all the pains going on in your life get to be too much and nothing, other than prayer, helps to get over things as well because a clean, decluttered, organized home ... there are just very few things that make you feel truly at peace.  It's such a small thing, you would think.  But it's incredibly healing.  For those of us sick with the DD, only when you get enough of an adrenaline rush can anything like this be accomplished - at least for me.

Now someone take me out to the back of a barn somewhere and just shoot me!  Talk about pain and paying back for all the stuff I'm doing.  Sometimes you just have a no-win situation.  Rest and the pain is intolerable.  Do something to distract from the pain and you pay in spades.  What's a person to do?  Work on until you drop is my most recent motto because it won't last and at least I'll get something out of it in the end.... or so I hope! 

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

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper 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 fear not: it's a firm promise!)

Friday Tidbits: Interview #2 with my Fibro & Pain Specialist

Most definitely: tongue-in-cheek! NOT the med needed for knee pain!

Today I thought I'd talk to my rheumatologist about a seemingly never-ending question of mine - that is, regarding the intensely nightmarish experience I had with Cymbalta. Recently I happened to be present when my GP and my rheumy were talking about Cymbalta and something that was said struck me.  That is, that Cymbalta, an antidepressant, was OK'd by the FDA for treatment of chronic painful musculoskeletal conditions such as arthritis and low back pain. 

Before going on, let me give you the link to our guest's credentials (here!!).  It's simply too tedious to go through all of his qualifications.  And for background on my experiences with Cymbalta, you may go here through many other posts, here where I thought it had a been a good lesson to out-right anger through to suffering like I'd never done before, ending around here.  For those of you who are masochists, there is the search box which will give you more than you ever wanted to know, I'm afraid!   

Now for the interview.

Upa:  Hi, Doc. Thanks so much for agreeing to indulge me with an interview about some of your insight into Cymbalta.  I suppose I should make it clear that you never prescribed it for me, nor did my GP, but instead, a psychiatrist in the hospital did.  You and my GP seem to have been surprised with my reaction to getting off a medication which I'd only taken for three weeks.  Feel free to start wherever you'd like.

Doc:  Hello. It's my pleasure to talk to you. [Upa laughs, knowing better.]  Cymbalta is a psychotropic medication that inhibits the re-uptake of two important neurotransmitters in the brain, serotonin and norepinephrine.  It was first approved for the treatment of depression but that's not surprising since manipulation of those neurotransmitters can affect mood.  When Cymbalta was approved for the treatment of fibromyalgia, however, I was not too surprised because fibromyalgia is thought to be a pain condition that is intimately associated with brain neurochemicals.  I was, however, taken aback by the FDA approving this "mind drug" for patients with mechanical musculoskeletal problems like arthitis and lower back pain.  

Upa:  May I ask you, so we're on the same page here, what IS the difference between musculoskeletal pain and fibro?

Doc: With fibromyalgia, your elbow, for example, might hurt, but it is not swollen nor deformed.   With arthritis, on the other hand, the problem is localized to a particular joint or joints and there is inflammation, the joint is warm to the touch and is swollen.  I don't understand why someone would think that a psychotropic medication like Cymbalta would be the go-to medication for a condition like arthritis.  

Upa:  Can you explain this a bit more in detail?

Doc: In their zeal to find a non-narcotic medication for certain painful conditions, the pharmaceutical companies have tried many different types of medications to treat pain. We already have very effective ways to treat osteoarthritis knees, for example, including narcotic medications which, when taken as prescribed, are fairly safe and effective.  If the run-of-the-mill, not psychologically-impaired patient were to be put on Cymbalta, he might run the risk of such side effects as suicidal ideation, or behavior.  If Cymbalta were ineffective, the withdrawal from that drug may be much harder to tolerate than even withdrawal from narcotics.  

Upa: This answer leads me to want to ask so many questions that I barely know where to begin!  There's always the narcotic question, there's fibromyalgia vs musculoskeletal pain and there are the Cymbalta side effects and withdrawal - and that's just for starters. Perhaps you'd like to choose where to go! 

Doc: Let's talk a little bit about the medications.

Upa: Yes. And I do understand that you do prescribe Cymbalta to some patients.  How do you make that decision?  And what sort of luck have you found?

Doc:  I certainly am aware that Cymbalta is approved for fibromyalgia, however, when I prescribe Cymbalta it is typically for fibromyalgia patients who are depressed.  I am prescribing it more for the depression than for the fibromyalgia pain.  It works well for some patients but is not effective in everyone and I have noticed that when these patients stop the Cymbalta they have very odd symptoms such as palpitations, anxiety, numbness and tingling and the like.  The bottom line is, we simply don't know the long-term effects of Cymbalta nor do we have enough information on withdrawal symptoms, so this drug should be used with caution.  This is in contrast to what we know about narcotics.  They have been around a long time and their effects and withdrawal symptoms are well known.

Upa: So, you're not really surprised that I had that horrible and lengthy reaction to Cymbalta?  And I suppose you don't agree with the thinking of the shrink who said that at least I wouldn't care if I had pain or not? (Sorry: but you know I always have to push the line!)

Doc: No, I was not surprised you had such problems from Cymbalta and a lengthy withdrawal from it. Cymbalta is a VERY powerful medication which affects two brain neurotransmitters, as I stated previously. Why wouldn't you have potential problems from such a strong psychotropic medication?  I am flabbergasted that some individuals, including doctors, fear narcotics but embrace medicines like Cymbalta, proclaiming that the later medication is so much safer than the former.  Even among antidepressants, there seems to be a general feeling in the medical community that medicines like Prozac, Zofolt and Effexor don't have the same risks as Cymbalta.  However, this is my take on it.  I've not done a study but I've been in practice for 31 years and have seen a huge number of patients taking anti-depressants, but I have not seen such severe side effects as patients taking Cymbalta. 

Upa:  Thank you so much for taking this time to clear up some questions I've had on my mind. There are certainly more questions I do have but perhaps you'll return for another session?

Doc: It's always a pleasure.  Call me in the future if you need to. 

*****************

And there you have it, the thoughts of an fibro specialist and pioneer with a very active and long-lived practice.  I hope this offers some of my readers insight and help.  It has for me.

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



(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper 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 fear not: it's a firm promise!)

An Interview with a Fibro Pioneer & Specialist

Recently a reader made a remark about tender points and fibromyalgia - that she was convinced that there were a couple of tender points around the ankles.  I'm not sure whether or not she was joking - as in "it sure feels like there are tender points there!" - or whether she was serious. And so I went to my so-called "anonymous source" on so many things fibro, pain, all things immunologic and rheumatic, and so forth. 

I finally decided that I'm losing a lot of information I can write about because I've kept my big source in fibro so shaded in mystery.  So, I've come up with a compromise of sorts, as well as an opportunity that my readers may well enjoy: 

• First, give my source's qualifications
• Ask him a few questions point blank, i.e. an interview
• Tell you that perhaps I can talk my fibro doc into answering some of your questions. I suppose I'd have to be the judge of which questions to ask, based on how much relevancy they have to most readers and where this blog is intended to "go." (And BTW: I love the twitter remarks but they do get lost so questions are best posted here.)

And so without further ado: what are the qualifications and certifications of my source?

Well, this doc went to undergraduate school in NYC and turned down Harvard in order to enter the MD/PhD program at NYU - where the government paid HIM to try this "MudPhud" program, not sure anyone could handle it. (MudPhud, get it?  It was a derogatory term given to the super nerds by the guys who were there because of their fathers being physicians.)  His PhD is not in some dinky field like "basketweaving in Bornio" but in immunology and he had around 15 papers published before graduating.  He presented many papers in the States and once in Denmark in his student days and won several national research awards.

Internship and residencies were done at the prestigious NYU/Bellevue program and then he went on to do a fellowship in St. Louis, studying under one of the foremost lupus specialists in the world.  His wife pointed out to him that he didn't have the personality for research at an ivory tower (too much his own person to go about begging for grants) and convinced him to go into private practice instead.  There he discovered, much to his shock and dismay, that patients were coming in with strange symptoms of something he'd seen before, "fibrositis," but had pretty much put on the back burner in his fellowship days.

And so it went. He was asked to serve on the committee which established the criteria for fibromyalgia, which took three and a half years to create.  (The youngest person on that committee and in private practice to boot!)  Blah, blah, blah.  Since then he has published in many peer-reviewed journals, asked to give feedback on other rheumtologists' manuscripts/books, has had chapters published in several medical textbooks. He served on a certain pain academy for 15 years in positions on various boards.  (OK, I'm getting bored with all of this!)

He's lectured in and presented his original research in numerous American cities as well as several cities in Canada, England, France, Denmark, Australia and quite a few others.  He has patients who come to him from all over the United States, Canada and a few from Europe.

Yes, he IS board certified in Internal Medicine, Rheumatology and is a Diplomate of the American Academy of Pain Management.  He is a contributing editor to a musculo-skeletal pain journal for which he writes a regular column.

He was also elected a Fellow of the American College of Physicians (FACP) as well as a Fellow of the American College of Rheumatology (FACR).  His practice has been officially designated a pain management clinic by the state in which he practices.

(I'm exhausted.  Someone shoot me. We're not anywhere near the end of the stuff the man has accomplished!!)

So skipping right along: finally, he also does quite a bit of medico-legal work, appearing in court as an expert witness.  

NO more!  On to our question at hand!  (I do have my limits!)

Upa:  Hi, Doc!  Well, you just heard what I've written about you.  Hope you approve.  And you also know what my question for the day is.  What is it with the tender points and fibromyalgia?  Why do we who have fibromyalgia often feel as if there are more than the 18 classic tender points we see on charts?

Doc:  Fibromyalgia is, as you and as your readers know, a widespread pain condition. The patient often hurts all over so it is not unreasonable to assume that there could be many tender points in many locations.  There is a reason why the American College of Rheumatology committee chose the 18 tender points used as one of the criteria for fibromyalgia.  High power statistics were employed by the committee to determine which tender points are most COMMONLY found in fibromyalgia.  That is not to say that they are the ONLY tender points, but rather if patients have those tender points the likihood of fibromyalgia being the diagnosis is very high. 

Upa: So, if I understand you correctly, your committee must have had talks as to where the most important or prevalent tender points were located and which would be included in the final criteria?

Doc: Of course!  In doing the research for the criteria, many other tender points, other than the classic 18 tender points, were noted to be present in the patients who were the subjects of the original fibromyalgia criteria study.

Upa: Wait a minute, please!  Who were these subjects?

Doc:  Each author was asked to submit information on 10 of his patients as well as info on 10 controls.  The control group consisted of patients who did not have the diagnosis of fibromyalgia, but had other common rheumatological problems, like degenerative arthritis or gout - painful conditions, but not conditions that cause widespread pain.

Upa: Thanks!  Sorry to have interrupted you but you know me and tangents.  So, you were talking about the tender points?

Doc: Yes.  You have to understand that pain is subjective, as is pain tolerance.  Therefore, I don't think you can say definitively that a patient with 18 tender points has worse fibromyalgia than a person with 15 of the classic 18 because they may have many other tender points causing them grief but those tender points were not including in the classic 18.  Furthermore, there is a degree of error when applying the criteria which have a specificity and a sensitvity of somewhere between 80% and 90%.  This is actually very good for biological and medical research but not as good in fields such as physics and chemistry.  To put it simply, the criteria are very reliable, but not perfect. So, the diagnosis of fibromyalgia remains a clinical diagnosis. 

Upa: Despite the new criteria put forth by the 2010 committee?

Doc:  Oh, you know which buttons to push! [Upa says, "Thank goodness there's not a gun in the room!"]  And you also know that's a subject for another day!  

Upa:  Oh all right. I know.  But seriously, I do thank you for your time and expertise.  I hope we can find an opportunity to look at another aspect of fibro at a later date, though not too far into the future! 

*******

So, my dear readers.  I hope you found this interview informative. I did!  

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

NOTE: remember to submit general questions for possible future posts.  Please understand that they can't be too specific as our source is not your personal doctor, has not examined you and all the other qualifying statements which are understood!  Thanks! 

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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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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.

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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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!)