RE: FM triger questions

[Guest guest]

I have had a tilt table test can you tell me what the CFS protocols are cause i

have not been able to find them anywhere and I KNOW My cardiologist did not

follow them i am interested in what they are to determine if he treated me in

the wrong way or not?

Thanks

On Oct 28, 2010, at 9:51 AM,

Beth wrote:

> My FM symptoms started when I decided to start exercising after having been

pretty inactive for several years. I wanted to lose weight and be healthier,

instead I developed a pretty serious case of FM and now I can't exercise at all.

> And since I wasn't exactly killing myself on the treadmill, I don't know why

it caused it - there certainly wasn't any kind of injury or trauma.

>

> Beth

Hi Beth,

Intolerance of exercise is a hallmark symptom of CFS.

Underlying many CFS cases is an inability to remain upright, sitting or

standing, without bizarre heart rate and blood pressure abnormalities.

Diagnosis depends on descriptions of symptoms and whether diagnostician has

treated more CFS or FMS patients. Most diagnosticians are unfamiliar with

intolerance of being upright as a cause of severe symptoms, requiring standing

test or tilt table test done to CFS protocols to confirm.

Personally, I don't experience much pain since eliminating dairy and

wheat/gluten.

Avoiding upright position helps me avoid coat hanger pain descending down my

back the longer I am upright and active and other severe symptoms.

Yet activity remains important so I fidget while resting. My goal is to get up

a few times for a few minutes every hour from resting in recliner with head

back, feet level with hips and to take stairs at least once a day.

Outside my home, I look for places to get my feet off the floor (usually on my

sport seat also used for standing in line at grocery, PO, etc) and I move my

butt forward in straight chairs, couches, slumping with my purse to support my

back, to avoid symptoms.

In addition, you may have had OI (Orthostatic Intolerance) for awhile without

realizing it, too.

Looking back with new knowledge of OI, I realize I have had it all my life,

becoming more symptomatic the older, the more active I became.

As for exercise, very very short times (5 minutes) of anaerobic, or muscle

building, exercise followed by long periods of rest helps CFS/FMS/OI patients

more than aerobic, heart building, exercise such as walking or running.

Here's a link to a long but excellent article about CFS-exercise research

being done by one with FM who is an exercise physiologist who also wants to

understand what happens to CFS/FMS patients when they exercise:

http://aboutmecfs.org/News/PRJan09Pacific.aspx

toni

cf-alliance.triad.com/

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