The Perils of Exercise

My mom, who CAN and DOES exercise first thing every single morning without fail.  In her 70's on a 3-week marathon through Europe. *I* couldn't keep up with her!

We've all come across many articles extolling the virtues of aerobic exercise as a treatment for fibromyalgia. Graded exercise treatment is the subject of several studies in patients with CFIDS/ME/CFS in Europe.  Here too, studies show benefit with few adverse effects.  It has become so much like propaganda or politically-correct medicine that one doesn't dare mention the fact that in many severe cases of the DD, exercise is detrimental to one's health.  However, allow me to let you in on the real scoop.  Rheumatologists in the know are aware of the futility of recommending exercise for many of their severely affected patients.  These are the  "train wrecks" who are so far gone that despite conventional treatment, they are still unable to function or endure the pain in their lives, despite all methods recommended and tried.

Exercise doesn't work for everyone, and certainly never worked for me.  In fact, exercise made me much worse and made me feel like a failure.  What was I doing wrong?  Was I not trying hard enough?  These questions haunted me because I am extremely driven and have always been motivated to get better.   

1996-97 was a really rough year. I was dying.  All avenues had been exhausted. I was desperate.  I knew that something had to give.  My life could not go on like this any longer.  I got over the very worst effects of the exercise propaganda.  Then I sought out other treatments (a further post on this turn of events to come!) which were far more successful and which allowed me to do things I never thought I'd be able to do again. These treatments relied heavily on my resting and allowing various healthcare practitioners to treat me and strengthen me so that my body had assistance healing itself and thus I could be more active.  Heck, I was so far gone at this point that we were grasping at any straw that we came across.

The treatments I received were aimed at what had been labeled as "adrenal fatigue" in the 1940's. The clinic's director and founder, a doctor whose experience of over 50 years in the clinic alone, had long ago come to the realization that forcing extremely sick people to exercise is NOT a good idea. This goes for fibro and CFIDS especially.  This clinic was a place where I would estimate that approximately 80% of the patients were fibro's and those with CFIDS.  Furthermore, this was no fancy clinic with marble foyers and state of the art chairs, exam tables, luxurious waiting rooms.  No, it would not be much of an exaggeration to say that it was almost a mom-and-pop operation.  It got results and that's why people came from all over. In this clinic the medical director employed therapists and doctors who specialized in everything from chelation (for heavy metal toxicity) to applied kinesiology,  rolfing, nutritional IV's, acupressure,  acupuncture, homeopathy, reflexology, colonics, diet, counseling (mostly spiritual) and more...you get the idea, I hope!  

I had an epiphany of sorts just recently.  It was a WOW! moment.  At NO time was I - nor any patient - encouraged to exercise!  I  - as well as many others - was too sick.  In fact six months into treatments, the Vietnamese-born acupressurist, a man of few words who had spent six years in a North Vietnamese POW prison, suddenly said to me in a quiet voice, "First time I meet you. I never see someone who dead but still alive."  Oh, he was GOOD.  Sooo very good at what he did.

It urks me: how can the medical establishment possibly push exercise on their sickest patients?  I bring up the "holistic" clinic because it was successful with MANY patients, including me.  It took a year of hard work (to be described in future postings)  but I went from "dead" to being healthy enough to fly to Europe to visit my daughter.  We now know that many patients with fibro and CFIDS have co-morbidities like growth hormone deficiency, DHEA deficiency, electrolyte abnormalities, myoclonus, insomnia, autonomic nervous system dysfunction leading to orthostatic hypotention and a host of other problems.  Are the advocates of exercise crazy?  Unless you take into account the uniqueness of each patient, a blanket recommendation for exercise leads to disaster.

My health improved (understatement of my life, perhaps) and my other doctors who were trained in and practiced western medicine were amazed at my progress.  Shocked, in fact.  To paraphrase my GP on one monthly visit, for example, he said, "I don't care if they tell you to wear cow manure on your head.  It's working!  Keep it up!" 

This post is an just an introduction to further discussions on treatments for fibro and CFIDS and what to avoid.

And because I know that many are wondering why in the world am I still bedridden?  The clinic fell apart once the elderly (read "ancient") head of the place was finally forced to retire due to old age.  I mourn that loss. His clinic saved my life.  I could use that now, especially when I often feel like a failure because I can't exercise nor do a tenth of the things that are "promoted" at this point in time by the current fibro/CFIDS "fads."  Like the weather in Seattle, in my heart I know that if I wait a little while, what is pushed now will become obsolete, only to return, go away, return, over and over again ad nauseum.

As always, I hope all are doing 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!

 (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!)

I DO treasure that which remains behind....

...That though the radiance which was once so bright 
Be now for ever taken from my sight, 
  Though nothing can bring back the hour 
Of splendour in the grass, of glory in the flower;  
  We will grieve not, rather find 
  Strength in what remains behind....
     ~William Wordsworth  (from "Ode to Intimations of Immortality")

It may seem absolutely ridiculous to some out there that a person who is supposedly so sick that she's bed ridden and, for huge stretches of times, is in bed 24/7, who can no longer cook for herself, who can't eat sitting up, who has a hard time talking/dealing with more than one person in the room at a time thanks to sensory overload, should be so interested in such trivial subjects as eyebrows. When I wrote part 1 of the miniseries, an hour after I hit the "publish" button, I was so embarrassed, thinking, "Good grief [actually my real words have been cleaned up], if someone stumbled onto this site right now, they'd wonder how and why someone so supposedly ill would go on and on about such trivia?"  If she's THAT sick, the thinking would probably go, shouldn't she somehow be out there participating in the name change of this awful illness?  Shouldn't she be using her time, and the energy she does have, more profitably on patient advocacy...or any number of other lofty issues/problems?

My answer is that I'm tired of living in that world of only going into the noblest of discussions and activity.  I've now lived with an illness that has so devastated me and robbed me of the "core Irene" that I am an Irene my husband never really knew, and my children don't remember, the more energetic, albeit already sick, mom.  It breaks my heart when I find out that my oldest often tells the stories to the youngest (and they are only three years apart in age) of what mom was like when she wasn't AS sick as I've been for the past twenty five years of the thirty seven years I've had this DD.

Just for a while, I'd like to live in a world not dominated, every single moment, by CFIDS/ME/fibro and its many parasitic hangers-on, as in severe insomnia, pain, light/sound/smell sensitivity, falls, swollen lymph nodes, migraines, tinnitus, BP craziness, neuropathy, IBS, the daily shots...the list goes on and on.

Furthermore, I think that for most of us, we generally DO feel better around beauty.

The other day, I happened to test out a new nail polish.  Given my limitations with "the Claw," I decided I'd paint only my left hand's fingernails.  After all, I just wanted to get an idea of how the color looked on me, the way it goes on, would there be a streaking problem.... I told myself (yes, I often talk to myself and hubby is always saying, "What? What?" not, altogether sounding much different than Ozzie Osborne - oh sweetie, you know I love you!) that I needn't give myself a  perfect manicure. I knew that trying the perfect manicure at that time would only lead to frustration because my left hand is still a huge problem, now, six months post-surgery. I told myself to just slap it on and then take it off after a day or so, and that later, when finally in the mood (come on!  It COULD happen!) I would then go the "perfect" manicure route.

And so last night as I was actually reading a book (yes!  Hallelujah!) and holding my Kindle with my right hand but clicking those pages forward with the left while lying on my customary right side, I suddenly noticed how pretty the nail color was, how perfect it looked on my hand and that this color has the potential of being a "really good" buy.  It put me in a great mood for a few moments, much better than a host of psychiatrists, psychologists, or life guidance coaches could ever hope to achieve, including my GP, my hubby and even my kids.  It's because I saw something pretty, with the same reaction that I feel WHENEVER I see something pretty...be it a daffodil, a vacuumed, dusted and sheet-changed bed and bedroom (MINE, of course!) or a pair of cool boots (though we won't go THERE for a while!)

I know it's superficial to to be hung up on one's looks too much.  And despite all appearances, I really am not crazily so.  Yes, I may be a bit of a beauty product junkie, but we all need to have a side of us that's not always focusing on the bad, nor problem-solving the world, nor the awfulness of this illness and what phase we're in with this DD.  A long time ago, decades actually, I wrote that it's not right to compare the CFIDS/ME/fibro suffering to any other suffering because ALL SUFFERING is suffering and it all hurts.  What we need to do is find a way to live with it, to minimize it.

I've found that in my life, I'm always looking for ways of improving my condition.  If I can, for example, eliminate carbs from my diet and see a .05% improvement, then another .15% improvement from massage therapy, then you know what? - I'm going for it!  It's all a matter of good old arithmetic and common sense.  If you add all the tiny bits of help - this, that and the other - soon you have an improvement of 5%.  And that 5% can make you or break you sometimes. Add more little improvements, and soon you're doing 7% better, add another "successful" med... I think you can see where I'm going.

I suppose this is where I get the most frustrated and upset and even angry: when I'm told by ANYONE, be it dietitians, doctors, "friends," family member outside of the immediate family circle, that I should try this and that.  I meaning I've had this illness for thirty seven (expletive!) years.  How stupid do they think I am when I'm told I should do this and that, by some very rigid people who have, when all is said and done, absolutely no idea what is happening to me internally.  They may see some symptoms, but not all.  My close ones, the immediate family, however, know when I've gotten too sick, be it from the blue to colorless lips, the slur that appears in my speech, the balance problems, the difficulty I have finding a word, the sweat covering my face and scalp and then the rest of me, the dry mouth which makes my teeth and tongue stick to my mouth so it's almost impossible to talk, the croaking sound that comes out when I'm so exhausted or under such pressure that my throat constricts.

Case in point and wow, this is a huge bugaboo of mine: exercise and pacing do NOT work, for ME!!!!  (Boy!  That felt good to say!)  Normally I do not advocate violence but sometimes I just want to smack someone "upside the head" when I hear the THEORY of exercise and pacing.  Been there, done that, long before many of those propagating this advice were even born!  What's more, I've come up with coping mechanisms which I thought were what anyone would give a try, only to find out that no, they're quite unique.  My daughter calls it being an actress and says I should get an Oscar.  I don't mean to employ dozens of tricks that make me appear "normal" to most...it just happens.  It's been evolving for decades and I can't even begin to explain them to you, just as I could never begin to explain how it is that I breath, I eat...it just IS, it just happens.

And understand, that I'm in no way saying anything negative which anyone here reading this blog has offered in the way of help.  I've started on my evening primrose oil, made as a suggestion by my old HS friend reading my blog and I think I see an improvement, though I can't yet be sure because I only got to it a week or so after the suggestion was made and then I forget half the time.  I've called my doctors and questioned the histamine angle only to be told that yes, that's been ruled out and often.  These observations and comments are made by those who don't just blithely say, "honey, if you'd just get your Be-Hind out of bed, you'd be healed!"  I feel no judgement on their part, as I've felt no judgement on any one's part who has offered suggestions here.

Besides, presumably, anyone giving me a suggestion here on this blog has actually read enough of some of my most deepest thoughts regarding CFIDS/ME/fibro and has read enough of my history to at least make a suggestion that makes sense.  It's the out-of-nowhere suggestions that are depressing and frustrating.  It's the rigid suggestions, like the ones that claim anyone and everyone who has CFIDS/ME/fibro will be helped by exercise, because it just isn't so with me...and I know it's not so for a lot of people out there.  I get so angry sometimes by that old chestnut of "You must do this," "you can't do that."  So many of us already experience so much guilt and on so many levels: do we really need more?  And God save us from those who think that if we tried things with more effort, we'd be magically cured.  I don't even want to go there!!!

I mourn the loss of the old Irene.  I hate all the things that have been taken away from me, a bit at a time, like baking bread a few times a week, gardening every day, visiting with friends and so on.  But I still have a lot of good things happening to me and I try to keep those things in mind.

And yes, I want to be more than this illness.  I hate that illness defines me in so many ways.  Sometimes, I admit, I do things I probably should never attempt, but really, how much can one be caged, even in a gilded one?

And so, knowing that beauty helps me cope - beauty of all sorts: the beauty of a wonderfully phrased paragraph in a book I happen to be reading, the beauty of flowers in bloom, the beauty of the hills around the town I live in, the beauty of a clean and organized, dirt/dust-free room, the beauty of the engineering of a particular product...well, I'm going to go on with trying to appreciate those things as long as I can, because for me, it adds to the quality of my life.  This seeing of beauty in what remains behind makes me usually realize that life is good and pursuing the good things in life is often what keeps life worth living.