A Great Topical Gel...

As many of my regular readers know, I've been going through a bit of a rough patch lately. (Falls and the rest are just "rough patches"?  Surely you jest, self!)  I'm getting a bit sick and definitely tired of the CFIDS/CFS/ME and fibromalgia and all the illnesses, conditions and problems that stem from them.

Lately I've had so much hip and buttock pain that it was affecting how I walk and was probably a big factor in some of my falls.  No, somehow I don't think it was responsible for the one where I thought getting out of bed via the foot board was faster and smarter than getting out via the side!  (That colored link will give you a funny -I hope - account.)  

When one of my doctors examined me, he found numerous areas of muscle spasm and even bursitis on both sides.  Local injections with lidocaine (for trigger points in the areas of muscle spasm) and cortisone with lidocaine (for inflammation of the bursa) helped but I still had a fair amount of pain in the hip and buttock area to the point that I was waking up in huge pain.  Usually, if I can finally fall asleep, pain doesn't wake me up, so you can imagine that I was NOT a happy camper - all week.  (And you know what they say, "If mama ain't happy..."  Yeah!  Cheerful place around here, let me tell you!)

I was already taking a maximum dose of Celebrex, which is an extremely safe anti-inflammatory medication, compared to the other anti-imflammatories out there.  I'm getting ahead of myself here, but I've long wanted to point out that Celebrex is much safer on the stomach than the other anti-inflammatories and is well tolerated by most, EVEN the stuff that's over the counter like Advil, Aleve, MotrinIB.   HOWEVER, the one draw-back is that you can't take Celebrex if you are allergic to sulfa-drugs.  (Thank heavens, a problem I DON'T have and it works well for me! Yipee!)  

Another point I've wanted to make is that when you read the side-effects of this gel, as with many other medications, the warning is overblown because it has to be.  That is, in the case of the gel, the same warning goes as for the oral meds, which we'll cover later.  However, you'll see why this is even a bit "deceiving" and certainly alarming.  But then you guys know how I feel about the FDA, etc.  Lyrica and Lunesta on the market despite SUICIDAL ideation and actions, but Vioxx taken off?  Nuts! 

But back on track... I'm already taking a narcotic medication - as needed for pain - along with a few other medications in my arsenal that should work but aren't.  So we got to the point where I've gone for the numerous injections in the hip and buttock area.  It's always worked before but this time we were really having trouble with the pain.  It was helping but not enough.  Mind you, I don't expect to be pain-free, but I can't live at a 9.5 and let the shots or meds get me to a 9.  It's hardly worth the "poisoning" of my body.  So, unfortunately, I was still having significant discomfort.  What's a girl to do?  (That last line seems to be a thread in my posts lately.)

Fortunately, there is a topical anti-inflammatory medication which has been approved by the FDA for osteoarthritis.  Any licensed physician can prescribe a medication "off-label," which as many of you know, means that if a medicine is approved for an indication such as arthritis, the doctor can legally prescribe it for other conditions such as bursitis, tendinitis, etc.  That's what's  happened in my case.  My doctor told me that the topical preparation, Voltaren Gel, might help me since it's effective in blocking the inflammation found in arthritic joints.  I applied Voltaren Gel liberally to both hips and buttock area (lots of real estate going on there!) and noticed a significant improvement in the pain and stiffness.  

So, what is this stuff anyway?

Voltaren is the brand name of diclofenac, an extremely potent non-steroidal anti-inflammatory medication (NSAID). Taken by mouth, it can relieve the pain, swelling and stiffness associated with arthritis.  However, it has major draw-backs. It can cause bleeding stomach ulcers, kidney failure, and liver damage when taken orally.  

On the other hand, the gel form is far safer than the pill form since only a tiny amount of the medication gets into the general circulation.  The bulk of the medication stays in the area where you put it and penetrates the skin to get to the area of inflammation. Therefore, as mentioned above, Voltaren Gel is far safer than any of other anti-inflammatory medications even those that are over the counter, such as Advil, Aleve, Motrin IB, etc.  Furthermore, Voltaren Gel has been around for well over over five years, so side effects have been seen and reported, analyzed, with no cases of stomach, kidney, liver toxicity.

Every year in this country approximately 16,500 people die of gastrointestinal complications due to ORAL anti-inflammatory medications.  I can't stress this strongly enough.  Taken as prescribed, ORAL anti-inflammatory medication can kill you or harm you, especially if you are susceptible to side-effects due to advanced age, have a prior history of ulcer disease, and/or weakened system due to other diseases.  

On the other hand, as my pain specialist explained, the topical gel form of Voltaren is very safe.  The only real problem with using this product is that if you are allergic to aspirin you MUST NOT use this product as its use could trigger a severe allergic reaction.   Otherwise, this preparation is very safe and potentially very effective as was my experience yesterday.  I'll let you know how it goes, but for the moment, I've got a bit of relief!  That's great in my book.

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


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Myofascial Pain & Fibromyalgia 101

What a fall!

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

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

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

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

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

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

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

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

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


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The (Woman) Doctor Behind President Kennedy's Pain Management

I'm happy to say that there were two articles just published in a medical journal about one of my heroes, Dr. Janet Travell, a pioneering doctor in pain (to say the least).  The articles, which discuss the autoimmune disease and the pain medicine aspects of President Kennedy's care by Dr. Travell, is found in this month's edition of the medical journal Practical Pain Management (with his image on the cover) and can be found at the link here and here.  I am especially excited as Dr. Travell has long been one of my heros - and I just wrote a post about her recently).

Dr. Janet Travell with  First Lady "Lady Bird" Johnson. Dr. Travell became President Johnson's White House Physician after the Kennedy assination. 

I'd like to point out that my "source" who knew Dr. Travell very well was not one of the doctors who wrote the articles - I don't want to mislead you - AND petty person that I am, I'd like you to know that I have excellent sources (ha! regarding "petty," true about "petty" and "excellent sources").  

There are a few problems I have with a few "facts" in the articles, but overall, the information is excellent.  Because of my extensive comments and my real effort to shorten my posts, I'll need to divide my observations into several parts.  I'm afraid that when it comes to pain management I get just a TAD (over) serious!  (Ahem!)

My reservations are mostly small, though some are important, while others are small, period.  On the other hand, there are a few points that I REALLY agree with that I'd also like to point out as excellent points made.  Today I'm starting with Dr. Jay's article in light of trying to spare people long-winded posts. (Yes, yes, I basically said that already!  Sigh!)

1. In the article by Dr. Jay, he's a bit inaccurate and I wonder how well he knew Dr. Travell when he wrote that "Her use of procaine injections was most likely into myofascial trigger points...."   UH...excuse me, but Dr. Travell wrote two volumes about myofacial trigger points, still sold at Amazon, as I noted in my post and I even placed a picture of the volumes at the end of the post.   My source tells me that she most certainly DID inject JFK's trigger points and that was also the consensus at a medical conference where she was the guest of honor.  This was when and where my source first met her as a relatively young man when she approached him in her wheelchair, knowing already who HE was, and saying she was following his career, "young man!"   (He would definitely have been too intimidated to approach her and this man is NOT easily intimidated!  Hero worship can do strange things to people (ha!).)

2. I only hope that when Dr. Jay wrote "other stimulants ... There continues to be methylphenidate for use, as well as amantadine" that this was a spelling mistake (maybe generated by the dictatorial iPad which haunts me as well!) and simply not caught by the editors.  On the other hand, I don't want readers confused by seeing this medicine quoted in this usage.  I only caught this error regarding Amantadine since Amantadine is an antiviral medication which I DO take, but for my CFIDS/CFS/ME, not for my fibromyalgia and/or myofascial pain.  The author most likely meant the stimulant, "amphetamine."

3. Dr. Jay also wrote,  "Finally, and most impressively, Dr. Travell treated more than the symptoms of pain and hormonal dysfunction.  .... Dr. Travell knew then what we know now -- physical exercise is necessary to maintain a number of physiological functions as well as to help decrease pain." 

Now this, the exercise, is a real bugaboo of mine, I fully admit it.  With all due respect, however, I beg to differ and one fibro source has even testified in court many times that exercise is not always appropriate for pain.  It all depends on the patient.   As I keep saying over and over again, we can't be plugged into any formulas!  Dr. Travell most definitely believed in what is right for each individual patient and didn't believe in any set "theory" other than going by results - and this in fact was an example of her genius! Furthermore, as I'm always saying, I've seen more theories come and go over the years, each time doctors absolutely sure that THAT was the answer.  I have finally started looking at everything as what works for me - after much damage was done to me, completely innocently, I must add, and much of it permanent damage - and I've had to long ago stop going with anyone's "dictates."  I can just imagine Dr. Travell looking down and shaking her head at some of the rigidity going on.

4. I whole-heartedly agree with the following excellent conclusion, however, and want to point it out: 

"Bottom line -- Dr. Travell treated President Kennedy in a highly appropriate fashion, using tools that most physicians today wouldn't know how to use, and even in ways they may not have been able to fathom.  I do believe that Dr. Travell knew or intuited various things about drugs and hormones that we now understand better and more deeply.  The fact that her treatment plan was so effective is a function of her exceptional skill as a physician at a time when physicians knew far less than we know now."

Now THAT quote is absolutely right!  Dr. Travell understood one could not be rigid in his/her thinking.  She also understood how much each patient varies and how each patient is unique.  In addition to her care, love and intuition of patient care, she understood that no two patients are exactly the same and each patient's care is unique to that care, something the vast majority of specialists today should remember.

"This is not cookie cutter...you gotta do it right," to quote MY source.

As always, particularly today, I hope everyone is doing their best, only better. As they say, "to be continued!"  Ciao and paka!

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A Model Life: Especially For Her Time

I have lived in a very special world - a world of love and security; beauty and serenity; opportunity, adventure, and variety; challenge and achievement; and the appreciation of my peers. I have had a sufficiency of everything that I desired and a surfeit of nothing."  -Dr. Travell, from Office Hours: Day and Night, 1968

This weekend I found myself thinking about the contributions that women have made over the years - and even in centuries past - in certain fields.  Yet all too often these phenomenal women have been forgotten.  It started off as a spoof I wrote to my BFF about the roles of women and men.  However, it developed into something else completely as that evening I got really sick and somehow my thoughts came around to a huge pioneer in pain management whom I felt many who read my blog should know about, especially the younger women I come across.  She's the mighty fine lady who was a definite pioneer in trigger points and myfascial pain syndrome.  And I love this part: though trigger points started their rounds amidst a tiny group of (male) doctors, through the 1920's, '30's and 40's, she outlasted her male counterparts.  They gave up, but she persevered, really discovered it and ruled it! 

Janet Travell (born in December of 1901) has been on my personal radar for decades for all too many reasons that I won't go into at the moment (did I just hear a collective sigh of relief???) and has fascinated me for decades.

At a time when men overwhelmingly ruled the medical profession, Janet Travell went to medical school in NYC, to Cornell.  She studied in a equally prestigious training program at New York Hospital, while also serving as an ambulance surgeon for the New York City police force - go, JT!  As a research fellow at Bellevue, she studied digitalis for lobar pneumonia, but it was during her years at Beth Israel Hospital in NYC that she became so fascinated in skeletal muscle pain, and which rocketed her career into the stratosphere.

Some of you very young readers may not really comprehend the magnitude of this sort of achievement. I'm old enough to remember having a pediatrician for a brief period who was a woman - and boy oh boy, did people ever notice - and criticize! (How unfeminine! How unseemly!)  Because of her devotion as a physician my pediatrician never married nor had children, which was quite the norm in all too many cases back then: choose a career or a family, but not both! Better yet, stay home bare-foot and pregnant.  At least now we have choices.  Back then, it was really tough to do much of anything for a woman.  And if a woman dared to become a doctor, the two "acceptable" fields seemed to be OB/GYN or pediatrics.

Yet Dr.Travell managed medical school, doing research, training, practicing, and then to marry and have two daughters.

 
In the 1950's, she took on a protegee, David G. Simons, who had served as an Air Force flight surgeon.   Many years later, they went on to write the seminal textbooks on  myofascial pain syndrome, aptly titled, Myofascial Pain and Dysfunction: The Trigger Point Manual; Vol. 1. The Upper Half of Body, dealing indeed with the upper half of the body from the waist up and then Myofascial Pain and Dysfunction: The Trigger Point Manual; Vol. 2., The Lower Extremities dealing with the bottom part of the body, from the waist down.  Both volumes are available at Amazon and the second edition of the first volume was published with Dr. Travell, though when the time came for the second edition of volume two, Dr. Travell had passed away.

In the 50's, when a certain politician happened to hear of the successful procedures that Dr. Travell had had with back pain the politician's orthopedic surgeon asked for her help.  This politician had sustained massive back injuries during WW2 and the many invasive back surgeries he'd then had to endure made his pain almost unbearable.  When this young man was later elected President, he asked Dr. Travell to be the "Personal Physician to the President" and she humbly accepted, thus becoming the first female physician to serve in this position.  After President Kennedy was assassinated, President Johnson asked if she would continue to serve as the White House physician but she left in 1965 for "greener pastures," as a professor, lecturer, and many other incredible "feats." 

Two bits of trivia.  First: if you've read any biographies of JFK, you might mistaken Dr. Travell as the infamous "Dr. Feelgood" who was often slipped into the back doors of the White House in order to give JFK questionable pain cocktails. This was most certainly not Dr. Travell.  Secondly, it was because Dr. Travell "perscribed" a rocking chair for the President's back that the rocking chair became wildly popular during the Kennedy years and long after. (Can you tell I love trivia?)

In an interview I'd done at one point, I asked a doctor who'd known Dr. Travell, why is it that we rarely hear of myofascial pain syndrome but so many are familiar with fibromyalgia?  Before he could answer I jumped in and asked if it was because fibromyalgia now has a "magic pill" in the form of Lyrica, Cymbalta or Savella and thus is advertised on TV an awful lot.  Yes, many are relieved by these medications but there's also huge profits to be made in these medications.  (Pharmas: if you happened to be reading my teeny tiny blog, I'm hardly worth your while and have left instructions as to what to do in the case of my  sudden death: joking!)  It's just the way the medical industry works: not good or bad, just IS, for many reasons.  (Remember, I don't do politics!)

On the other hand, myofascial pain needs the skills of a trained physician to hit those trigger points just right and, indeed, to even identify them.  (Poor man couldn't get in a word edgewise with me there!)

I asked him what precisely is the difference between fibromyalgia and myofascial pain syndrome?  Before I could jump in with an answer for him, he told me that myofascial pain syndrome is a condition that affects the muscles, and, of course, the famous "trigger points" are involved.   Fibromyalgia, on the other hand, involves the brain, in the central nervous system, and has "tender points." 

These two fields evolved separately.  On the whole, myofascial pain syndrome is addressed by physiatrists (not a spelling error!), and physical rehabilitation medicine physicians, even anesthesiologists at times.  I've read that chiropractors who practice kinesiology are often involved in this field also. (And I can attest to one chiropractor who practiced "applied kinesiology," which helped me tremendously.)  Furthermore, many of her techniques are still in use today, especially in sports medicine treatments.

Some of us who have CFIDS/CFS/ME often have fibromyalgia (there is much overlap) and/or myofascial pain, as is in my case.  The overlap of CFIDS and fibromyalgia is often hard enough to distinguish.  The physician who isn't well-trained in both fibromyalgia and myofascial pain often has trouble distinguishing the two fields as well, and in too many cases doesn't know about either field, though that is changing, albeit slowly.

After President Kennedy's death, Dr. Travel continued with an ever-increasing successful career.  I've heard from a couple of doctors who knew her that she was charming and witty.  She continued going to conference well into her 90's, despite a wheelchair, and kept up a practice seeing patients up until the year before her death, at the age of 95.  She was always encouraging to the talented young doctors coming up along the way and kept up a steady correspondence with many.  One doctor told me how he came to see something that Dr. Travell hadn't realized in her book but was uncertain as to whether or not he was seeing things correctly and had so much respect for her that he called her, gingerly addressing the bind he was in.  Rather than be discouraging, she was thrilled that he'd made this observation and encouraged him to publish and indeed nominated him herself for the Janet Travell award, twice!   Yet when this doctor was even younger, a (male) mentor was afraid of publishing findings because he feared alienating anyone in his field, despite the new evidence.  And you wonder why I think she's so incredible?

And, you may wonder, why in the world did I bring up Dr. Janet Travell in the first place, other than to be present a piece on what to some may appear to be trivia?

The answer is that I've realized that many of the people who read this blog are young, more often young women as opposed to young men.  They (you) have dreams, often life-long dreams, which have been put on hold.  They (you) need to rest up and take care of themselves in order to beat these "invisible" illnesses.  The odds, they (you) often think, are against them.  (Oh good heavens: we can be here all night with the semantics!)

I'd like for them to consider two things.  First, you may have to take a leave of absence from the life you envisioned for yourself in order to give your body the rest and healing it needs.  

But secondly, your dreams may change as you make this new journey.  Your dreams may become even more rewarding than you might have ever imagined before coming down with these various illnesses.

To give you a good feel for the magnitude of what Dr. Travell went through: it was only in 1920 that women in the US got the privilege of casting a vote.  But, in 1920, Dr. Travell would have been only 18 years old, but everyone - male or female - had to be 21 years of age to vote, so she had to wait for the following election to place her first vote!   And yet in just a little over 35 years later, she was the official physician at the White House.  Oh, how I love that!!!

I don't care for the fact that too many doctors, advisers, etc., are giving out advise that is "one size fits all."  Think how wrong a bathing suit that "one size fits all" looks like, or even a T-shirt.  Why would we want medicine that does?

So, again my message to all is, learn to read your bodies.  No one will ever know it as well as you do.  Then give your doctor or doctors the info she (or he!) needs in order to work as a team to get you better, no matter what illness you or your loved ones may have.  Knowledge is power!

So, to Dr. Travell: hats off to you.  Another fine example to all, certainly an inspiration.

And in the meantime, I hope all are feeling as best as they can be, only better.  Ciao and paka.

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