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, October 16, 2012

"First Do No Harm"

Believe me: no one's laughing or smiling during this test!

Today's topic is one I've gone on and on about with fellow CFIDS/ME/CFS and fibromyalgia friends, as well as some pretty great doctors, for ages: lack of commonsense, waste of money and gimmicks in one area that I simply cannot see the justice in, namely the "tilt table test," in order to detect orthostatic intolerance or Postural Orthostatic Tachycardia Syndrome (POTS).  To tell you the truth, this post was written a few months ago but I hesitated to publish it because I felt I needed to tone it down a bit.  Wrong: I should know by now that one of my character flaws is that I don't feel better about things until I get them out.  Until then, I just get angrier about what I see as an injustice or even worse - worse than injustice, that is, not my behavior.

I can't even remember how often I've read on blogs - or before blogs were even imagined, on forums back in the '90's - that someone with CFIDS/ME/CFS and/or fibro has had to go and have the (now to me "infamous") tilt table test.  This is total insanity.  The ME patient gets sick from this test.  And believe me, I know.  As the T-shirt says, "been there, done that!"  Twice!

Whenever I read about another person who is subjected to the "tilt table" test and happens to mention that they got worse after it, I want to scream out "STOP IT, YOU IDIOT DOCTOR!" and that's just the tip of what I REALLY want to say. Fainting is only one problem that can occur during the test. The heart stopping is yet another problem.  When I saw a cardiologist a few years ago, HE almost passed out when he heard that I'd undergone the tilt table test, shaking his head at the insanity.

Over the years, I've done a bit (!) of research and interviewing about this subject because my first experience made me so sick.  Why did we do it?   Well, because it was "the thing" back then in the late '80's and early '90's.  But might I add that back then the advice/command and conventional wisdom was also, "no pain, no gain," and steroids to be taken every day, along with dozens of other "hard and fast" rules and beliefs which now sound goofy, if not crazy?

I didn't blame my doctors back then and looking back, don't now either.  We were in the "Stone Age" when it came to understanding CFIDS/ME and fibro.  No one knew what was going on and the advice, though very wrong and which ended up so often making me sicker, often with irreparable harm, was not malicious.  Nor were my doctors hesitant to reverse or modify what wasn't working, that which went against common sense when they saw a "failure."

But the tilt table test, in its time, made me horribly worse for much longer than I ever could have imagined.  Even back then I fumed.  In fact with this one thing, of so many other things, I fumed so much that I just couldn't let it go for some reason.  It was that little voice in your head that nags at you, telling you that something is wrong here.  My analogy is that it's computing in your head but the information won't come out because there's a paper jam.  Finally, the paper jam is resolved and eureka!  The paper spits out the info and you have the revelation.  OK. This may not the best of analogies, especially given how little I know about computers.  After all, I don't even know how to print anything out!  Sadly true!

But getting back to the tilt table test.  Shame on me for going through it again with a top ME specialist (eye-roll is the least of the facial expressions you can't see at this moment) within the last 5 years. I was so much sicker the second time around - it was the very reason I went to this doctor in the first place.  We were very, very, very desperate, wanting, indeed needing, yet another top doctor's advice.  It was a nightmare for many reasons, but the tilt table test is the bit that just sticks to me and I CAN'T let it go, especially since I KNEW BETTER.  I didn't listen to my instincts.

The good news?  There is an easy way to establish orthostaic intolerance.  Easy, cheap, fast and with no relapses, no making the illness MUCH worse as it was in my case.  After the second test, I actually had to be hospitalized.

The easy solution - and I hate to use the word "easy" because it sounds too good to be true.  However, I've spoken to quite a few sources about this over the years, pioneers in their fields, ones I respect a lot.  Each one has said the following, to use a very old-fashioned practice:

You lie down on the exam table and your blood pressure is taken.  You then come up to a sitting position and your BP is taken again.  Finally, you stand up and the BP is taken once more.

In my case, my BP is basically 90/70 lying down, 80/65 or 80/60 sitting and 70/55 or 70/50 standing.  The huge shifts are the orthostatic intolerance.

BUT: It doesn't even really matter what the numbers are, as long as there is a large progression in the decrease of your BP numbers from lying down, to sitting up, to standing up.  For example, if I'm in enough pain and not dealing with it well, my BP will go up to 130/whatever and a few times much, much higher.  But sitting up, it'll go down, and standing up, it'll go down even further.  With some CFIDS/ME and fibromyalgia patients, it takes a little longer between the sitting up and the standing up for the changes to be noticed.  I happen to be one who needs no time at all, going kapooie at once.  It's no fun, I agree.  But this is so much easier on the body than being strapped into the machine and made to stand in/against it in the dark while the doctor annoyingly whispers gossip with his nurse for an hour.  If nothing else, how rude!

The only question that remains in my head?  Are those doctors still using the tilt table test just plain idiots, trying to run a procedure to make more money or simply trying to pay off and justify the purchase of an idiotic product?

And let me make this perfectly clear: normally, I have a bit of a problem when people complain about doctors making money, because doctors are trying to make a living, just like anyone else.  They have a lot they're fighting and those who still elect to treat us, the "train wrecks" of medicine, should on the whole be commended.  We're not easy patients, to put it mildly.  These doctors also have had extensive schooling and training.  I get that.

However, when I see something that is being done that belongs back in the "Stone Age" in regards to ME, and we're now in what I like to refer to as the "Middle Ages" in ME, that is, we still have so far to go, I do get very, very upset, and I think justifiable so.

Yes, this is a rant.  But it is a justified one which has been researched, and which I've, unfortunately, had experience with.  I would like to see this horrible injustice stopped for good in the case of ME.  I don't know about the effectiveness or ineffectiveness of the test in other illnesses - I'm the first to admit this, though I don't see how it would make a difference - but I know that in this case, all too well, the problems that do result.  Doctors who treat us must remember that most important part of the Hippocratic Oath: physician, do no harm.

Orthostatic intolerance is a huge problem, but why add to the problem by using a machine that induces further complications when there is a tried-and-true method that costs nothing and does not cause a patient to get even sicker than before?

Rant over.  I must admit, my heart is beating at an unhealthy rate here, knowing that I am not politely carrying out politically-correct messages, going against a lot of people out there who've never had it yelled out to them that they're not wearing clothes, as in the proverbial tale we all learned as children about a certain emperor.  But so it goes. What's going to happen to me?  Will someone take away my status as a "professional CFIDS'er"?  Please: that's one title I'd love to be rid of!  In the meanwhile I'll lose some sleep: like that's anything new?  So, why the rushing heart beat?  Because I don't like confrontation?  At my age, it may well be time to get over that too.

At any rate, as always, I hope you're feeling your very best, only better.  Ciao and paka!


  1. Your bloggs are just fantastic informative with humor all rolled in. Brilliant Sophie x

    1. You are most kind, Sophie. Thanks so very much - a wonderful way to start the new year! xx