More evidence that quacks are just plain wrong

Yet another article saying that exercise can be detrimental to CFS patients, despite what the quacks and their lawyer believe.  www.masmith.inspired.net.au/docs/stein2.htm#Orthostatic  

 

"Most of us have grown up with these ideas [that exercise is good] and it is difficult to believe that for people with CFS/FM these ideas are untrue."  

 

One of the quacks testified that even on days when I had to rest just getting to the kitchen and back, I should go out and exercise.  Does he think I have more energy to exercise outdoors than indoors?!  If I can't make it the 20 feet from the bed to the kitchen, then how does he expect me to walk a mile? 

 

They just don't get it that some days, it's an act of utmost willpower just to get out of bed to feed the cats; there isn't enough willpower in the universe to walk a mile on days when it takes 15 minutes of trying just to sit up in bed, and when I finally accomplish that, put my feet over the edge to stand up and fall back onto the bed.   My diaries indicate a lot of days when I walked a couple blocks to run an errand (mailbox or corner store) and returned exhausted.  Sometimes, it cost me not only the rest of the day in bed, but several days in bed. 

 

I trust my own experience, and what experts Dr. Cheney and Dr. Bell say about exercise, not what someone who's never even heard of Cheney thinks is the right treatment because it's the right treatment for other problems.  

 

These quacks have got to learn to listen to the patient, to hear out her concerns, and to have the humility to admit that they do not know much about this cryptic disease and perhaps the patient would do better to go read up on it herself, rather than telling the patient to do something detrimental and then acting like she'd have recovered if she had done what they told her, despite it being contrary to the experts' advice and research.  On several pieces of advice and prescriptions I got from these quacks, I was asked by other medical professionals "were they trying to kill you, or just get big bucks for an ER visit?"  

 

The new Cheney interview,  http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm , suggests cardiac involvement.  I complained of chronic dizziness and fainting -- cardiac symptoms -- and mydiaries list other symptoms, all of which were brushed aside or attributed to "anxiety" rather than a physical cause.  I'm going to get the last laugh if getting the test mentioned in the article proves that I have serious cardiac problems, and heart damage that possibly could have been avoided if someone had tested for it sooner.  Then we'll see how much a jury awards me for losing 30 years of my work life because these quacks wanted to treat me for depression (which the psychiatrists say I don't have), thyroid (which the blood test says I don't have), and laziness (which my former co-workers will say I don't have), while ignoring the documented "severe sleep disturbance".

Cheney brings Changes

Although I've been accepting of the fact that I have a disabling condition for many years, the new information that 100% of disabled CFS patients have cardiac insufficiency, http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm, has changed my view on some things.

For example, for years I've bought into the notion that, disabled or not, I "have to" do my own housecleaning, as difficult as that might be, because it would prove to people that I'm not Just Lazy, or "would rather stitch than clean". Well, now that I know that it might kill me to do heavy cleaning, I'm more willing to accept that a cleaning lady is a life-or-death issue, not a "luxury". I'm going to have someone come in a couple times a month, whether the place "needs it" or not. It's worth $100 a month to not drop dead while cleaning.  It wasn't worth the expense to have more stitching time, nor to avoid spending a couple days in bed after a cleaning binge, but now we're talking about preserving life.  (Of course, the question is, whether the government, which insists we must preserve life, will consider it worthwhile to pay someone to clean to preserve my life, or whether they're still going to think that I could do it if I tried.)

The cardiac insufficiency research explains a lot of the problems I've been having: the fainting, the dizziness, the inability to concentrate as well sitting as I do lying down (less blood flow to the brain), the shortness of breath, the difficulty getting up the front stairs, and, oh, yeah, the fatigue. The fatigue could be explained by the "severe sleep disturbance", but the feeling that I wasn't getting enough oxygen, which often came upon me when I was out walking -- I couldn't figure out how that related to not sleeping well. Now I know.  It doesn't, except in the sense that the sleep problem and the heart problem are both symptoms of the same ailment.

On the subject of sleep disturbance, they've been treating me with sleeping pills. They put me to sleep -- well, most nights -- but I wake up groggy and it's pointless to try to work before noon. 

A couple months ago, I went to a lecture by www.DrRodger.com and found out about 5HTP. Taken with vitamins and 700 mg of magnesium, it builds serotonin levels. Dr. Rodger's theory was that the SSRI anti-depressants the quacks were giving me, instead of the sleeping pills I kept requesting, weren't working because I didn't have enough serotonin to be reuptook. From the description of my sleep patterns, Dr. Rodger says they should have known I had a serotonin deficiency.  I've started taking 200-250 mg of 5HTP at bedtime, and most nights have been sleeping 6-7 hours, naturally, a vast improvement over some of the sleeping pills which

              (1) didn't put me to sleep at all,

              (2) didn't put me to sleep half the time,

              (3) got me 3-5 hours of sleep, and left me confused part or all of the next day OR

              (4) gave me a full 8 hours of sleep, at the cost of having to stay horizontal till noon or risk cracking my skull when I blacked out while sitting or standing.

With the 5HTP, I still need a few hours to wake up fully, but I'm nowhere near as brain-dead the next morning.  I can actually do some work before noon -- slowly, but competently.  :)  I find it makes more sense to stitch in the morning and leave the paid work till afternoon when I'm fully awake ... not going to lose any clients if I make a mistake stitching.  But that's still a vast improvement over 2003, when I couldn't do either.

God bless Dr. Rodger and Dr. Cheney.  One's given me my life back, and the other has given me the information to live a normal lifespan.