Friday Tidbits: Factors in Developing CFIDS/CFS/ME and Fibro (Part 2)

 Oh how I wanted a horse: but it was not to be...think of all the falls and head injuries I managed to escape! 

Continuing my article from yesterday where I told y'all about a few of my childhood head traumas... I'm in the midst of trying to figure out which contributes more to CFS/fibromyalgia: trauma, genetic predispositions or.... We've discussed head trauma and are on our way through to genetics.

In 1996 my mom and I flew to Russia for a most extraordinary family reunion which I'll write about some day. While we were there visiting one set of very close relatives in the far north, we also wanted to visit another branch of the family, my cousin, in the (far) south.  Well, this particular cousin is my half-cousin if you want to get technical and in this instance, we do want to keep that in mind.  My half cousin is the daughter of my mom's half brother.  In other words, we both share the same grandfather.

Visiting my cousin was an incredible experience.  We planned on being there for two weeks.  She lives off the Black Sea and the Azov Sea, not too awfully far from where the Olympics will be held in Sochi. 
 
Keep in mind that in 1993 we had visited my cousin for one day and night (it was a two-day train ride from Kiev, each way!) not knowing when and if we'd ever see each other again.  In the course of the visit, it came out that I was ill with CFS/fibro. (I did look just a tad peaked when I got to their home.  My mom, in her 70's, looked like a teenager compared to me!)
 
So, when my mom and I visited in 1996, my cousin was determined that I would have a restful time and not do anything but rest, rest and rest some more.  And I did.  My cousin is ten years older than me and though she is one of the kindest people I've ever had the joy to meet, there is no mistaking that she is the matriarch of the family and what she says goes. (Sort of like my mom, me, my daughter....)

I rested, rested and rested.  Other relatives would come by and I was still forced to rest.  I visited with relatives and a few friends but there was an old cot set up for me in their patio-like area and I did most of my visiting from there.  My mom went on a few trips here and there, but I rested, too sick to attend a party thrown in our honor, and so forth.
  
In the course of the first week, I made an incredible discovery.  My cousin, it appeared, has CFS/ME and fibro! This was why my cousin had insisted on my resting so much, pampered me and knew what factors would be stresses.  I also learned some handy tips from her I hadn't known...like never taking a too hot bath or shower, because it is so debilitating. (This was ages ago and I can't believe I hadn't make that observation consciously.)  She monitored the water temperature like some dictatorial, though benevolent, water official!  I was served the freshest food around, despite the fact that oh so many in Russia and Ukraine were starving after the fall of the Soviet Union.
  
My cousin did not have the label of CFS nor fibro because Russia was having its changing into a "democracy" problems where people were dying of starvation - there were over 100 children who died in my cousin's city the winter after my second visit.  My cousin's family was spared because she had two goats (for very rich milk for her grandchildren), chickens and jars of canned goods, food she'd grown in her garden, not to mention the many American dollars we gave her to split amongst the various family members. 
 
As I looked around me at how hard her life was, it saddened me to no end.  This was a time when no medicines were manufactured in Russia.  From home I'd brought as many basic medicines as I could fit into my suitcases.  Even Tylenol was a premium med not available at the time.
 
But I still had a hard time seeing my cousin so ill.  She had no choice but to run a "household," a word that meant taking care of not just the house, but the chickens, goats, garden, all those things that you absolutely have to get out of bed for.  

I discovered that a few times a year she would have what we would call a "flare" and she'd be in bed for a couple of weeks while her daughters would come over to her home and would try to take care of the basics which couldn't be ignored.

She had absolutely no help on the medicine side.  But what I found fascinating is that she had the opportunity to go to a sanatorium for a week or two each year.  This, hard to believe, was not state-funded but private. How, why, I don't know.  But each year her family would chip in and somehow get the money for "mom" to get away for total rest and relaxation.  They all felt that this was the only reason she was doing as well as she did and was, for all practical purposes, still alive.

As the time went by I discovered many things.  I learned that my cousin was very healthy until (OK, this bit will sound like some sort of really bad joke!) a tank part fell on her head where she worked in a factory that put together - well, you guessed it, tanks. You did not want to get her started on the whole "tank" thing, quite aside from the unfortunate "accident" she'd had.  No meds in the former Soviet Union?  "Why?" you may ask. Well, it's because the USSR felt that tanks were more necessary than meds, which could be produced in other, Soviet bloc, countries.  And the number of tanks?  Evidently there were enough for each adult and child in the former USSR and with some left over! She's one feisty woman, that cousin of mine.

I have no doubt that my cousin had excellent medical care, despite all the jokes at the expense of Russia's medical establishment.  I was there when there were a few small medical crises as well as a couple of near-fatal ones in Perm - in the far-away north - as well.  Doctors really cared. They may not have had the basic medicines and testing equipment, but their common sense was honed to a fine art and what we call "alternative" medicine or even "old women's medicine" was used if they thought it would help.  They even made house calls, as I was shocked to see. 
 
The doctors wanted to do a spinal tap on my cousin a couple of years before I ever entered the picture.  I had had two of them with abnormalities appearing in the spinal fluid.  I often wonder what my cousin's spinal fluid would show but I don't blame her for not going that route.
  
So, do I think there is a genetic component to CFS and fibro?  Probably. Given a set of circumstances, there is probably a genetic predisposition.  

Do I think that head and neck trauma can contribute to fibro?  Oh, you betcha.  A resounding "yes."

I also realized that my cousin had a luxury that we don't have.  Aside from the food crisis (which can't be underestimated), there was so little stress in their lives.  For example, they didn't use a washer or dryer and I could see that in adding washers and dryers into our homes, we've used that time and energy saved into taking on more things, obligations, commitments if you will, many of which are stressful.  Think of how stressful life has become with cell phones alone, though I'm sure that the younger generation in my cousin's town all have cell phones by now.  In fact, we've even skyped a few times.

I ate three fresh-food and delicious meals a day with little activity.  We were in the midst of a heatwave, with 112 degrees the entire time I was there - and no AC - though there was no humidity.  And yet I who cannot tolerate anything but 70 degrees anywhere at all, managed to come home 15 pounds lighter, looking a decade younger when hubs picked me up at the airport and feeling the best I'd felt in ages.  It was such a successful visit, health-wise, that hubs often suggests that I go back and visit.  Unfortunately, life gets in the way. 

But, just thinking....and observing how things are.  I think that in addition to trauma and genetic predisposition we really can't rule stress out either. 

As always, I hope all are doing 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.

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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Fibro Is No Accident

If you're going to fall, fall the right way!

There are many ways in which a person might develop fibromyalgia.  In my particular case I can recall having several significant accidents which involved my head and neck as a child. (Not surprising is it?)  Thankfully these weren't  severe enough for me to have surgery or even any hospitalizations.  However, looking back, I can't help but feel that those falls contributed to my present health problems. (Wanna know how to freak out a rheumy nor neurologist?  Tell him about your head traumas and watch him turn white!)  Although my CFIDS/ME/CFS was most probably caused by a bad "flu" in 1975, my doctors and I believe that the fibro was just ready to come popping out as in "the straw that broke the camel's back": I had become predisposed (by a LOT!) towards fibro because of the freaky (and I do mean "freaky") head and neck trauma I sustained.  I 'll have to save those gems for another post when we all need a huge laugh!

Quite a few people have mentioned to me that it wasn't until they had been in a bad fall or in a motor vehicle accident that they developed fibro.  Would they have gotten fibro anyway?  Or did the trauma somehow trigger the development of fibro in those people?  

Many years ago there was disagreement among doctors as to which it was.  For example, there was a large conference in Vancouver, B.C., Canada in 1994 to settle the issue.  It did just the opposite.  The doctors felt that they needed more information and more studies to answer the questions as to whether or not trauma could cause fibromyalgia.  Up until that time, there were only four published studies linking trauma and fibro in a cause-effect relationship.  The proceedings were published in the Journal of Rheumatology in 1996. 

Since that time, more studies have been done and by 2001 the consensus of the leading rheumatologists at a conference in Toronto, Canada was that in some cases trauma can indeed  trigger the development of fibromyalgia.  This opinion was unanimous and the paper was published in 2003 in a special edition of The Journal of Musculoskeletal Pain whose editor and chief is I. John Russell, MD, PhD., a prominent internationally known fibro expert who was also a member of the committee that published the fibromyalgia criteria in 1990 (mentioned previously).

Despite all of this information there is often resistance on the part of accident insurance companies to pay for the medical expenses of someone who's developed fibomyalgia in a motor vehicle accident due to someone else's negligence.  Just because you can't see this "invisible' problem does not mean that it does not exist. Giving insurers the benefit of the doubt (ahem) this can very well be because the insurers do not understand how a "whiplash" injury to the neck or a low back injury due to a rear end collision can evolve into a widespread pain problem like fibro.  What further complicates the situation is that it takes time for the fibomyalgia to develop.  Even more confusing, is that many patients with such injuries do NOT develop fibromyalgia.  Consequently, a careful evaluation must be made in each and every case to determine whether or not an injury caused fibro.

This situation is not only of theoretical importance.  Injured people need the best treatment possible and conventional health insurance can only go so far.  If an individual is injured by someone else in a motor vehicle, for example, all of their injuries, including fibromyalgia, should be covered.  This often requires a large settlement to cover the cost of medications and treatments that will likely be needed indefinitely as there is no "cure" for fibro.

What can be done?  If you're injured, make sure you get an excellent evaluation and if widespread pain was not present before the accident, make sure your doctor checks you for fibro.  Remember, there are now two different sets of criteria that can be used: the 1990 criteria published in Arthritis and Rheumatism and the 2010 criteria published in Arthritis, Care and Research.  Fibro is not a "wastebasket" diagnosis and can cause a great deal of suffering and even so much impairment as to be disabling.  (See other post re disability.)

Don't let this problem get out of hand.  Take advantage of the "window of opportunity" when healing is still very much a possibility.  Get early diagnosis and treatment so that things don't progress to the point of where you can no longer live a productive life.

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


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