When Is Lupus not Lupus? The ANA...

Systemic Lupus Erythematosus (lupus) has historically been called "the great imitator" within diseases.  And mind you, lupus has earned this title fair and square because it, as many of you know, can affect many different systems of the body which can cause an incredibly varied array of signs and symptoms. (That's a mouthful!)  The screening test for lupus is the antinuclear antibody blood test (ANA) and it's incredibly rare that someone with lupus would have a negative ANA.  However, having a positive ANA does not necessarily mean that you do have lupus.  Pretty confusing?  You betcha.

I recently interrogated interviewed my rheumy/immunologist and asked him what his pet peeves were - professionally and not the personal kind. (Hahaha: we do have a weird relationship!)  He practically jumped out of his chair without having to think about it.  It was getting too many referrals from doctors who were convinced that their patients with positive ANA's had lupus when indeed they did not.  These patients had chronic pain in joints and muscles, fatigue, and a blood test that suggested they had a connective tissue disease like lupus.  Sounds fair enough.

However, there are numerous medical conditions that are characterized by pain and fatigue which can cause sufficient stress to confuse the immune system into making an auto-antibody like ANA, albeit in small amounts - certainly too small to cause obvious disease.  Most of these patients had something else and it took a great deal of time, energy and further testing in an effort to explain and to convince them that they did not have lupus - they were just that convinced that they did - and who could blame them?  Getting a positive ANA is just plain scary.  Furthermore, what added stress to the patient believing that lupus was hanging over the their head until the patient's condition was indeed straightened out!

And so the important point to remember is that the ANA is not just a test that is positive or negative.  There are DEGREES of positivity.  (Please keep in mind that this is all common knowledge in the rheumatology world.)

The way the test results are reported is in the manner of a ratio which represents how strong the antibody concentration is in the serum (blood without the cells).  For example, an ANA that is positive at a titer of 1:40 is a rather low amount of ANA, which is often found in patients with a variety of diseases, including fibromyalgia.  On the other hand, an ANA with a titer of 1:1,280 is a high titer, one that's often seen in lupus patients.  

Keep in mind that the pattern of ANA is also important.  There are four different patterns that can be seen under the microscope: homogeneous, speckled, nucleolar and peripheral.  The latter, peripheral, is more consistent with lupus than the others.

If a patient has a high titer ANA, further studies are typically done to nail down the correct diagnosis.  These often include a double-stranded DNA test and serum complement levels.  Of course, a good physical examination is essential in pointing the way to the most critical blood test to be drawn in order to   differentiate among the likely diagnosis in order to come to a correct diagnosis.

The bottom line is that a patient might have a positive ANA but that does not necessarily mean that one is dealing with lupus.  It takes a skilled clinician to determine if lupus is present or not, and if not, what is causing the patient's symptoms along with the positive ANA.

True, lupus IS "the great imitator" but problems such as fibromyalgia and early rheumatoid arthritis (both of which can have positive ANA's) are up-and coming contenders for that title.  How many of you have had low titer positive ANA's, or worried that you might have lupus and it turned out to be something else?  Worse, the positive ANA was not explained at all, or just poo-pooed?

I hope this helps shed some light on an area that can be very confusing and worrisome.

In the meanwhile, I hope everyone out there is feeling their best - only better!  Ciao and paka.


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The Beauty of the SED Rate

Not too long ago, I mentioned the SED rate in a post (link).  I'd heard about it for ages but for some reason it never REALLY made it to my radar.

What I've found interesting is that I've had these tests done - and didn't know it because so many tests are run on me.  My rheumy told me that when I've had fibromyalgia flares the SED rate came back normal. However, when I've had CFIDS/ME/CFS flares, characterized by fevers, sweats and swollen lymph nodes - common occurrences with me across the board - the SED rate numbers were often mildly to moderately elevated, only to fall back to normal when the above hallmarks of infection went away.  

But one fine day, while talking to my rheumy, he said something that made me go "whoa"!  Sayeth my rheumy, "If I had to choose only one test to use for the rest of my career, it would without a doubt be the SED rate."  Well blow me over!  It's just THAT good and useful?

So the follow-up question was, what exactly IS a SED rate?  I had a good idea of it: that is, it was a blood test and involved inflammation and I knew it was crucial for lupus, but didn't understand it well enough to explain it to anyone.

But my lovelies, I'm here to explain the test now!  It's a simple blood test which has been around since 1897, invented by Polish physician Edmund Biermackego  - in some parts of the world it is still referred to as "Biemacki's Reaction" - and then "rediscovered" in 1918 by two Swedish physicians, pathologist Robert Sanno Fahraeus and Alf Vilhelm Albertsson Westergren.  (Sorry about the butchering of the names!)  The two Swedes are remembered by this test with the name "Fahraeus-Westergren Test" (FW) and in the UK as the "Westergren test."  But I digress...

I find it incredible that the SED rate is performed in every hospital in this country.  It doesn't need to be sent out to a special lab and results are ready within an hour and a half.  Furthermore, it's not very expensive! (There's finally a break for us after all!)

Continuing: the SED rate (Erythrocyte Sedimentation Rate) is a measurement of inflammation in an individual. It's a simple measurement of how far a column of red blood cells (erythrocytes) fall in one hour. The further the cells fall, the higher the SED rate and the more serious the inflammatory problem. In fact, the red cells tend to clump when measured in the test tube and these clumps - due to inflammation - tend to make them heavier, thus the fast fall.  The rate is measured in millimeters.  For example:

• An infection such as Tuberculosis (TB) or severe pneumonia would have a high SED rate, usually above 50 mm.  
• Other medical problems such as tension headache, fibromyalgia and osteoarthritis would be represented by a normal SED rate, usually less than 20 mm. 
• The really bad, life-threatening conditions such as rheumatoid vasculitis and giant cell arteritis have extremely high SED rates, typically over 100 mm.

I guess you can see where we're going here!  A normal SED rate helps the doctor rule out a huge number of conditions, typically inflammatory or infectious.  If, however, the SED rate is abnormal, the doctor must figure out why since the SED rate is not specific for any one disease but it is extremely sensitive.  In other words, if you have a bad infection or have severe inflammation the SED rate will pick it up but it won't tell you which disease you actually have.  

Some examples of how my rheumy uses the SED rate are: 

• Distinguishing between fibro (normal SED rate) and polymyalgia rheumatica (high SED rate).
• Helping to determine if the patient has osteoarthritis (normal SED rate) or rheumatoid arthritis (high SED rate). 
• Determining whether the patient's chest pain and abnormal EKG is due to atherosclerotic coronary artery disease (normal SED rate) or coronary angiitis (high SED rate). 
• Monitoring therapy.  When a vasculitis (high SED rate) is being treated successfully, the SED rate should tend to go back down to normal.  If that doesn't happen the doctor should rethink his treatment decision and perhaps raise the dose of cortisone, as an example, to get the inflammation under control.  
• Reassuring the patient whose Sed Rate is normal that he/she does not have a life-threatening case of Wegener's Granulomatosus (because the Internet strikes again, putting fear into us where there shouldn't be any), despite the patient's insistence that he/she does in fact have this dreaded disease.  
• Tracking the course of a patient's disease. For example, a lupus patient might not need to take medication such as cortisone which can have a myriad of side-effects if the SED rate is consistently normal and the lupus mainly affects the skin and a few joints. However, if there is a spike in the SED rate there could be major organ damage if the lupus flare is not addressed.  
• Figuring out if the new patient who has just walked into a doctor's office with a complaint of headache needs immediate intervention to prevent blindness or stroke as one would fear with Giant Cell Arteritis  (very high SED rate) or can be treated using medications to only ease the symptom, as in tension headache, migraine headache or mixed headache disorder (normal SED rate).  

My rheumy (thank you, kind sir!) stressed to me that any doctor, regardless of specialty, can use the SED rate to his advantage in treating a whole variety of conditions.

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


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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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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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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!) 

How Safe Are Silicone Breast Implants?

It's been said by more than one wise man (and woman!) that if you don't know history, you're doomed to repeat it.  Sadly, one of the things which we are definitely doomed to repeat is the development of fibromyalgia and other painful complications as a consequence of silicone breast implants.  To say that I'm frustrated about this turn of events is putting it mildly.

About 30 years ago, a group of doctors observed that some women who had had silicone breast implants were experiencing muscle pain, joint pain, fatigue, and problems with memory and concentration.  We're not talking just a little bit.  These problems were so bad that there were women, for example, who had careers juggling millions of dollars for their companies who suddenly couldn't write out a check.  These were women, some of whom had had breasts which had become so grotesquely deformed as the implants started leaking, that their systems were being poisoned.  At the time when this became a rather huge problem, the vast majority of doctors did not link these problems to the implants. Not surrisingly, they attributed these symptoms to well-known, established inflammatory connective tissue diseases, such as lupus, rheumatoid arthritis and scleroderma.  That turned out NOT to be the case.  (Whoops!  Big Whoops!)

The medical establishment made the mistake of saying that silicone breast implants did not cause painful musculoskeletal  problems.  However, just because the silicone breast implant problems didn't cause lupus, rheumatoid arthritis and scleroderma didn't necessarily mean that they did not cause other significant disorders in some patients.  

In the early 1990's, there were observations of a large number of implant recipients who developed either fibromyalgia, myofascial pain syndrome or both after implantation.  Not every woman developed these problems but enough did to get the attention of some fibro researchers.  In 1994 a silicone breast implant settlement agreement was made, the details of which are complicated.  However, the bottom line is that woman could apply for compensation if they developed musculoskeletal and/or neurological problems after implantation.  Very strict criteria were required by the courts in order for compensation to be made.  This was an effort to avoid patients suing Down Corning, the manufacturer of many of the implants.  (Down Corning applied to the courts and was granted the opportunity to avoid lawsuits in order to avoid bankruptcy. Monies were set aside to compensate women who met the strict criteria for the settlement litigation.)

Judge Pointer of Alabama required that patients be examined by a board-certified rheumatologist or neurologist and have the findings submitted to a review board which then determined if criteria were met and compensation would then be awarded.  Millions of dollars were paid out to thousands of women even though they did not have conventional rheumatologic diseases, although there was a section for patients who developed lupus after implant surgery.  

Clearly, these implants caused problems in many women, not just here in America.  To test the theory that the implants were indeed a legitimate health hazard, researchers chose to go to South Korea and obtain results with South Korean women who had had silicone implants -because there was no litigation to muddy the issues.  They found, much to their surprise, that the South Korean women developed the same problems as American women after implantation.  There was definitely something going on, and it wasn't good!   

So, why bring this up now?  To my horror, silicone breast implants are making a comeback.  No one should undergo this type of surgery without being informed as to the potential hazards even if the implants don't rupture, and the surgery doesn't go as planned.  True, the risk of getting lupus or other connective tissue diseases is low but the risk of getting a chronic, potentially debilitating condition is NOT low.  In fact, many women who develop fibro or myofascial pain syndrome after implantation may be extremely confused as to the cause since the FDA had given its approval again and these woman were probably told that the silicone is now safe.  

Today many women may opt for the saline-filled implants, but one must keep in mind that the saline is contained within an envelope made of silicone which could easily pose a threat to their health also.  

I find it disconcerting that now, in 2013, the medical community has not learned its lesson.  The Mayo Clinic, for example, has written the following on its website, with regards to a ruptured silicone implant:

"Ruptured silicone implant

If a silicone breast implant ruptures, you might not notice right away - or ever - because any free silicone tends to remain trapped in the fibrous tissue (capsule) that forms around the implant.  This is known as a silent rupture.  

Leaking silicone gel isn't thought to cause systemic or long-term health problems — such as breast cancer, reproductive problems or connective tissue disease, such as rheumatoid arthritis. Still, a ruptured silicone breast implant might eventually cause breast pain or changes in the contour or shape of the breast.  

If this happens, your doctor will likely recommend surgical removal. If you wish, a new implant can usually be inserted at the same time. 

If an MRI scan detects an implant rupture but you don't have any signs or symptoms, it might be up to you and your doctor to weigh the risks and benefits of keeping the implant in place or having it removed." ~Mayo Clinic

After reading this excerpt, a potential patient gets the impression that aside from local problems such as infection or leakage, there are no adverse health consequences from the implants.  And yet this is completely at odds with the medical literature and the experiences of many physicians and patients.  (I have my sources.)


I do not write this to bash the surgeons, the implant manufacturers, nor the FDA.  I just want women to be informed regarding the major risks and complications of this surgery.  If a woman decides to still go with the implants with informed knowledge, God speed.  However, every woman should know what the risks are, even though it's been 25 years since those days when everyone was talking, writing and suffering from this problem.  How easy to forget inconvenient findings and to forget what a generation of women have already gone through.

As always, hoping everyone is feeling their 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!)

Is it Fibromyalgia or Lupus - or Both?

As the late comedian Rodney Dangerfield would say, "I get no respect ... no respect at all."

Often, I feel as if those of us with "invisible" illnesses such as fibromyalgia don't get the respect which WE deserve.  As a fibro sufferer I all too often feel that my condition is not treated as seriously as other medical problems which can be documented with objective testing such as blood work, urine tests, x-rays, MRI's and so forth.  (I'm not even going to go into the amount of respect CFIDS/CFS/ME gets, though in the end it can be described by one word: "none"!  Whoops!  I went there, didn't I?)

But it can also be dangerous not to be diagnosed with fibro if you happen to have it, or to go to a doctor who doesn't understand or treat fibro knowledgeably.  Some doctors want to lump fibro into the psychiatric wastebasket, others ignore it entirely and still others think of fibro patients as hypochondriacs. However, what may even be worse is the situation where doctors claim to be fibro experts - yet are not aware of the treatments available. 

Examples abound and I hardly know where to begin, especially given that I DID make that promise to you, as well as to myself, that I was going to work hard on shorter posts.  (Ugh!)  It's most unfortunate that too many of us can give too many examples of these problems with diagnosis of fibro as well.  However, I'm going to give you my take, that is, give you the old college try! 

Recently I was given a link to a so-called fibromyalgia expert whose videos appear on YouTube.  The video I watched was full of misinformation and confusing language.  It saddened me to no end when I thought of all the people out there who were getting this sort of care.  It also angered me that this self-proclaimed expert would often refer to "trigger points," hallmarks of myofascial pain, when he discussed features of fibro. How WRONG could he get, and so brazenly? 

"Trigger points" are, after all, associated with myofascial pain and "tender points" are found in fibro.  Perhaps what scared and upset me the most, however, is that knowing the difference between fibromyalgia and myofascial pain is Fibromyalgia 101, the introductory course.  If this self-proclaimed fibro expert actually went to the trouble of making a video tape and sticking it onto YouTube, you'd think he'd know better than to link the two terms "trigger points" and "fibromyalgia" in the same sentence, much less link the two in the same title of the one video I could force myself to watch - which I then eventually had my rheumy/immunologist see in order to make sure that fibro-brain here wasn't missing something.  This difference of trigger points and tender points is just basic Fibromyalgia 101, not even going into the challenging aspects of this complex medical condition.

Speaking of which, moving on to a more sophisticated level: musculoskeletal pain, fatigue, low stamina, and cognitive difficulties.  Sound familiar?  These are, obviously, symptoms of fibro.  However, they can also be problems that patients with other illnesses have.  Frequently, for example, fibro can coincide with systemic lupus erythematosus (lupus) which is a potentially fatal autoimmune disease.

The coincidence of fibro and lupus in the same patients was described over 20 years ago by Dr. Peter Lipsky, a famous Harvard lupus expert.  However, too many doctors today still don't realize that both conditions can occur in the same patient and that one cannot tell which symptoms are caused by which condition unless a careful evaluation is made. There is a dynamic interaction in the human body and things can change quickly depending on various triggers.  Examples of these triggers are stress, overexposure to sunlight, poor sleep and bad infection (like the flu).  Why is this important?  (I'm so glad you asked!)

If one has a flare of fibro, and also has lupus, the wrong treatment may be given to that particular patient if the treating doctor is unaware of the fact that the patient he is treating for lupus also has fibro.  For example (is there no end to examples today?), a patient with both fibro and lupus presents to the doctor with an increase in joint and muscle pain.  The doctor may assume that it is a flare of lupus and treat it with cortisone-type medications and possibly immunosuppressive agents like methotraxate, azothioprine and cyclophosphamide.  However, this could be a huge mistake if the increase in pain is due to fibro and not lupus.

First of all, the treatment with the above medications won't work if fibro is the culprit.  Second, these medications can have pretty nasty side-effects.  Cortisone can cause fluid retention, weight gain, brittle bones.  If an immunosuppressive is given when a doctor believes you have a lupus flare but it's actually fibro or a fibro flare, the immunosuppressive can actually cause such life-threatening complications as a low white blood cell count, which can lead to infections, or a low platelet count, which can cause bleeding in the brain and other organs.  

The flip side of the above scenerio is when a fibro patient who also has lupus has a flare of lupus but the doctor thinks that the worsening symptoms are due to the fibro getting out of control.  What can happen is that the doctor might adjust or change the fibro meds with the patient going into kidney failure or having a seizure from the lupus being untreated.  

The moral of the story is: you need to get an excellent doctor who understands these conditions inside out.  Actually, we deserve more excellent doctors who can help us.  You also need an excellent work-up to make sure a correct diagnosis - or diagnoses - is made.  We deserve that as well.  Just because you have lupus doesn't mean you can't get fibro and vice versa.  

In the old days lupus was called "the great imitator."  We know now that this title can apply to fibro as well.

Now that is worthy of Rodney Dangerfield, as in the first part of his last name: it is DANGEROUS (get it???? huh? huh? nudge! nudge!) to have your doctor misinformed.

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


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Betrayed!

One of the best days of my life was reviewing my SPECT brain scan and seeing tangible evidence of all the damage in my left brain.

I'm not a conspiracy theorist, but if one looks at the story of CFIDS and/or fibromyalgia, one can't help thinking, "we" who are afflicted with CFIDS/ME/CFS and/or fibromyalgia were "doomed," for whatever reasons, right from the start.

It seems that NOTHING has gone right in the past almost 40 years.  Excuse me for repeating myself just a tiny bit from what I wrote in my "P*ssed Off" post, but to put us all on the same page, here are just two points I made: the few funds we fought so hard for from the NIH, were misappropriated by other agencies and really, no one cried "foul," much less was anyone taken to court for criminal activity.  When the doctors at Incline Village, Nevada could finally talk the CDC into sending a "team" to investigate the outbreak of this new disease - in a cluster - the "team" had the gall to spend its time skiing and sampling the restaurants instead, with the "team" arriving in Atlanta and declaring there was no outbreak in Incline Village.  And so it went....

It's now decades later and a third generation is becoming ill with this truly monstrous,  hideously cruel, though highly invisible, disease.  And what's happening?

Well, what's always happened, but for a few glorious years in the late '80's and '90's, is that we are being thrown back into the psychiatric wastebasket.  What???  It's the 21st century and we’re doing what?  Going back to 1970's standards?

• A couple of points first:  There are markers that can be found that prove CFIDS/ME/CFS and fibro exist.  The elevated protein in my spinal fluid is just one example, and it was seen in 1984 and 1988!  Yet are these biomarkers being used in anything that can help the CFIDS, etc, patient?   Not much.  Ampligen, around since the 1970's is still trying to get off the ground and avoid bankruptcy.  Funny, Viagra never had this problem.  Heck, Viagra was the first drug (or thereabouts) to be fast-tracked.  Those congressmen and senators wanted their...well,  you know what THEY wanted!  And they GOT it, as I'm sure everyone's aware, given all of us have gotten a spam or two trying to sell us the product, for male OR female, since we started exploring with the most primitive of computers and the Internet.
• Furthermore, just as another example - albeit a very stunning and almost unbelievable example - until the 1960's, rheumatoid arthritis, a disease NO ONE today would dispute as being a terrible physical affliction, was thought to have its origins in mental illness.  And yet man was almost to the moon when this disease was still marginalized and worse.  The term, "Rheumatoid personality" was used quite extensively until blood tests like Rheumatoid factor became commonplace.  Mental institutions a hundred years ago were filled with patients who had such physical problems as lupus and thyroid disease, to name a few.  It wasn't until objective blood testing revealed the true cause of the patients' problems and effective treatment could be sought after and implemented that the psychological wastebasket treatment was thrown out.  See a parallel with the mess we're dealing with here???

This sort of thinking is not just insulting but it's downright dangerous as well. There are consequences that will and are being paid because of this lackadaisical attitude.  Some entity, a government, a bunch of people, some sort of institute doesn't like a certain illness, well, then just throw it into a psychological wastebasket.  I think Hitler had that problem to some degree, no?   But it gets worse.  Here are some bullet points for you!

• Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities.  The proof is in the pudding, folks.  We're no further now in 2012 than we were back in the 1970's, really, or for all practical purposes.
• Betrayal by the American College of Rheumatology.   Now there really needs to be no touching of the patient: overlap of CFIDS & fibro, both diagnosed clinically, that have, for all practical purposes, no lab test or x-ray that leads to diagnosis are in for a lot of trouble.  Oh, some tests are available, but the testing is incredibly difficult to obtain and no insurance company is going to OK the costs.  The scarier part, to me at least, is that the American College of Rheumatology (once a great champion of fibro and CFIDS) proposed a new set of fibro criteria in 2010 which was based on the patient's history, a questionnaire which would yield a Widespread Pain Index (WPI) and a Symptom Severity Scale Score.  If the WPI reveals pain in at least a certain number of body parts and the symptoms of fatigue, cognitive problems and unrefreshing sleep are sufficiently severe then one is labeled as having fibro.  Imagine this, in contrast to the 1990 fibro criteria, where a minimum number of tender points had to be present.  Now the doctor doesn't need to touch you at all!  Furthermore, the dolorimeter, an easy, practical, HARMLESS and inexpensive test, which was used to measure pain threshold is basically gone, as is the Brain SPECT scan, which shows abnormal blood flow in the brains of fibro and CFIDS sufferers.  Yet the"useless," "harmful" and money-making (money-wasting) tilt table test is still out there, almost a relic of the Spanish Inquisition, and  persists. (Getting rid of the tilt table test is like trying to kill off Rasputin!)
• With no touching of the patient, only a questionnaire, how accurate are the criteria?  They become completely subjective and hardly objective at all.  This only gives ammunition to those who say that CFIDS and fibro are not real illnesses or that they are psychological.

Along with no - or only a cursury - physical examination, other potentially serious illnesses would likely be missed (as is already happening, me being Speciman A!):

• The sad thing is that medicine in general is become more and more depersonalized with an over-reliance on testing, and a minimum of physical contact between the doctor and patient.  When the doctor would check for fibro tender points, he would often find evidence of such co-morbidities as myofascial pain syndrome, arthritis, thyroid disease, growth hormone deficiency, to name a few.  It seems as if the newer criteria are for the convenience of the doctor, not for the benefit of the patient.  It's bad enough that fibro and CFIDS patients are labeled as being depressed or suffer from anxiety, but if this trend continues, even those docs whose hearts are in the right place will rely more and more on questionnaires and less and less on physical findings.
• This psychological wastebasket is also dangerous since once patients are labeled as mentally ill, all symptoms are viewed through that prism and physical pathology all too often goes undiscovered. It is important to note that fibro and CFIDS patients score very differently on standardized pyscholological tests than do patients with depression.  For example, the depressed patient will not attempt a task or activity, underestimating his ability to perform it, whereas the patient with CFIDS or fibro truly believes that he can accomplish a given task only to collapse when the flare of the disease knocks him down or out.  Yet that very patient believes that in the future he can attempt the task and succeed.  No two types of patients could be more different, yet the medical establishment stresses the psychological and downplays the physical.  When a rheumatologist is asked to use a questionnaire instead of a physical exam to diagnose a physical ailment, something is very wrong - after all, don't psychiatrists behave this way, never touching the patient?
• Why is it that medications such as anti-inflammatories, anlagysics, and quinine are taken off the market for problems which cause side effects in relatively rare instances?  However, medications such as Lyrica and Lunesta, which are still on the market and are so dangerous that they are required to disclose mind-blowing side-effects on their TV commercials - which not only include suicidal ideation, but suicidal actions - are still being sold like pancakes at Octoberfest?  Why is it that we are so "persecuted," since I cannot think of another word to use?

As I wrote in an earlier post, Stalin, in his great sanity (not!) decided to punish the "rich," "peasant" class, the most productive class in Russia and the Ukraine, called them "kulaks" and took all their land, food and shelter away from them, then shipping them to Siberia in cattle cars.  This occurred in the famine he induced, on purpose, in order to kill at least 10 million Ukrainians in just one winter, 1932-33.  These two countries, Russia and the Ukraine, are still feeling the repercussions of having lost so much talent, 80 years ago.

Somehow I feel as if this country - plus a few others; we are not alone in this criminal behavior - in the land of the free and the brave, is treating each of us as "kulaks" also, again.  The vast majority of us with CFIDS/ME/CFS and fibromyalgia were all highly productive citizens at one time, contributing to taxes, the economy, the work force, but many are now trying to get by on meager government funding, which is barely enough to stay alive. Think of how much good to society we are wasting when we allow such a highly-motivated and skilled population to rot away. Yep, we're like the kulaks. The only difference is that we're just dying at a somewhat slower pace.

We paid our taxes, we trusted our government, as well as the medical system, and we've been betrayed in the worst possible way.

What can be done about our situations?  I'm not really sure, but here are just a few thoughts:

•  I know that celebrities have often changed the course of illnesses or causes.  AIDS' "perfect storm" was when Rock Hudson, the beloved movie star, contracted AIDS.  The country softened its views about AIDS.  To further away the stigma, then Elizabeth Taylor, Princess Diana (under great criticism), Elton John and young Ryan White, who was helped by Elton John, were able to stir the conscience of this country's attitude toward AIDS and funding - and to make it not feared like leprosy - an analogy which I've always found to be repulsive since why should leprosy be stigmatized?  Actually, it took a lot more pieces for that "perfect storm," but these were the ones that put AIDS on the map and made it no longer the fatal disease it was in its first years, if medication is taken properly.  Yes, it's expensive, but then so too is my Human Growth Hormone alone, not to mention the 25 plus meds that I'm on, give or take a few, depending on which year it happens to be.
• Mothers Against Drunk Driving (MADD) worked because Candice Lightner, the mother of a girl tragically killed by a drunk driver, knocked on every congressman and senator's door, repeatedly, befriending staff with coffee and donuts until she found someone who might be able to help.  It was a tough job but look what it led to!  (And yes, there are political problems, but again, look at the results!)
• Breast Cancer awareness began at a grassroots level.  Parkinson's entered the mainstream with Michael J. Fox, and his dogged determination.
• Autism became big when upper-class parents united.

But CFIDS and fibro?  We need to find our celebrities, our dogged pursuers, the ganging together by healthy people who are on our side and start a huge funding project for our cause.  How this will happen when the American College of Rheumatology has given up on us as well, I'm not sure.  I know it's not going to happen for a while.  But happen it must.

Our country can't afford to keep losing its greatest resources, its best and its brightest.

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


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