About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, March 5, 2013

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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  1. Every description of ME/CFS begins with stating that exercise 'exacerbates symptoms'. When I became seriously ill (1986) I tried to figure out what affected how I felt: muscular exertion was the thing that made me sicker. We don't know yet the full explanation for this illness, and in the meantime we should treat it like they did TB before antibiotics - Ramsay and Acheson both said 'complete rest gives the best prognosis', and pointed out that those valiant souls who struggled against the illness were the ones who ended up severely ill. GET is serious medical mismanagement - rest gradually makes space to resume more or less normal activities - conserving physical exertion as a way of life can enable us to follow a path towards getting better. Exercise somehow poisons the system, and ME/CFS people need to ration it - we really have to give up exertion for its own sake. Being able to run marathons should not be our goal - we need to keep up our normal lives, our education, our professions, our friendships, our interests, while minimising physical exertion. I'm so sad that your wise old mentor is no longer there - but keep hold of the fact that no one there recommended exercise!

    1. Thank you, Nancy, this was brilliantly written. I agree wholeheartedly with everything you said, from the example of TB to your words about GET. I plan to write more about this subject (exercise). The more readers I hear from - mostly on twitter - the more horrified I am by some of the "abuse" and bullying I hear about which too many patients are forced to put up with, this in addition to the all too-often-totally debilitating illnesses, ME/CFS and fibromyalgia, and the many co-morbidities that need to be dealt with as well.
      Again, thanks so much. I truly enjoyed hearing from you! xx

    2. Hi, Irene - when I wrote my reply above, I was beginning an application to Lancaster University to do a Ph.D. on ME/CFS, contrasting the physiological and psychiatric models, and investigating how the psychiatric model gains its dominance. I hope we can stay in touch- I follow lots of blogs, and continue to be absolutely stunned at how severely ill, suffering, disabled individuals manage to achieve so much, with such positive spirit and determination - so, so far from the negative image that is portrayed in much of the media....my hope is that perhaps an academic work, if I can make it good enough, can serve as another weapon in the ongoing struggle to be recognised for who we are and what it is we suffer from!

    3. Thanks so much for getting in touch with us again so we can see how you are doing, Nancy. Your work sounds fascinating and I hope it ends up doing "us" a lot of good: it sounds very promising. "We" do get the worst press imaginable, amazingly so. Thanks for trying to get us some good research. xx