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.
Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts

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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Tuesday, December 4, 2012

Fibromyalgia and the Lottery (or Santa)

Last week as "everyone" knows, there was the great brouhaha about the many multi-millions dollar lottery which took the country by storm.  I'm not one for lotteries, but with all the coverage on the news, it was difficult not to have it register on my personal radar.

I just thought I'd write and tell y'all about what I'do if I were to be the winner.  Each and every time there's a huge lottery, I have the same dream.  And a great dream it is too: most who have won these great lotteries have not survived the riches.  That's not to say that I'm better than anyone else.  It's just to say that I have such plans that would hopefully keep at bay those demons that have harmed so many others.   For example, relatives coming out of the woodwork, which do so much damage to the winners, would have no claims on the funds asking and saying, "but giving me a couple of million wouldn't hurt you."

First, I must admit, I'd have the usual.  I'd buy or build myself a new house with enough land for privacy and then build houses for my kids as well (on that land, of course!).  I'd also throw in a barn with a couple of wonderful horses.  Yes siree, I have the plans all figured out.  Because then....

I would set up a fibromyalgia clinic, though I do admit that I'd probably be heavy on the CFIDS/ME/CFS area: we deserve it!  Yes, that's been my dream for at least the last 25 years of this cruddy run of 38 years with the DD.

"My" clinic would definitely be a "holistic" clinic in the complete sense of the word where not only would we have doctors dedicated to the care of the CFIDS/etc and fibro patients, but we would also have therapists specializing in the sorts of care that help each patient for the unique set of problems she/he has.  No rigid thinkers allowed would be one motto! 

I'm not sure that there would be enough money for bench research, but there would certainly be a lot of leeway for clinical research: think of all the brain-storming that could take place each day!  Think how far we could come in the observations of all these good people working together and seeing patterns and going from there.  Again, no rigidity, but looking for patterns and what works would be there!


The doctors that would definitely be needed are:
  • CFIDS/ME specialists
  • Fibromyalgia specialists
  • Sleep specialists
  • Autoimmune specialists
  • Dentists: one example for the need is because of the dry mouth problems which cause so many dental problems including losing all teeth.
  • Ophthalmologists: there are a lot of visual problems with "us."
  • Neurologists
  • Cardiologists
  • Endocrinologists
  • Psychologist/life counseling: this would be tricky as we want to help patients deal with the changes in their lives and help the patient to establish what he or she feels is realistic and healthy.  However,  we most certainly would NOT want to have those who try to throw patients back into the psychiatrist waste dumpster ("wastebasket" is too small a word).
  • Psychiatrists: I'm still iffy on that one!  Way too much baggage (on the part of the shrinks!).
  • Dermatologist: I'm always going on about our sensitive skin and the cruddy things that happen to it!


    Some of the therapies to help the patients get back to as normal a life as possible would be:
    • Rolfing
    • Applied Kinesiology
    • Acupuncture
    • Acupressure
    • Nutritional IV's: after determination of what vitamin and nutritional deficiencies are there.  
    • Nutrition counseling: special diet advice, tailored for each patient for each individual's particular needs.
    • Chelation services: for those who have heavy metal toxicity.
    • Massage therapy 
    • Sleep study labs: and ones that allow for more than one night!


      And then there are the services:
      • A hotel on the "campus" where patients could room in while they have their work-ups or small apartments for extended periods of stay.  
      • Laboratory services on or near the premises so that the blood work needed to determine deficiencies, etc., would be available as soon as possible.  
      • Testing such as MRI's, SPECT scans (if they can still be found we'll find them), fMRI's, etc.
      • AND a clothing store for those who have trouble with finding the sort of (nice) dresses, pants, etc. I'd even have a specialist in bra fitting: you'd be surprised the difference a properly fitting bra can make in the area of shoulder pain and so forth.
      • Activity facilities such as swimming or horseback riding.  
      • Cats and dogs to help soothe the patient who's away from the family - besides, therapy dogs are just so darn cute!
      • Movies and shows that make us laugh: we need those endorphins!
      • Hair facilities for those who have problems with hair loss: I've written enough about my own struggles with hair!


        Yes, everything would be available on this "campus."  We'd get people who really understand our conditions, who really believe in our conditions and are top rate.

        I think a few million dollars short of a billion should do the job?  What do you think about this idea?

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