Re: Difficult to Exercise

[Guest guest]

On Apr 21, 2012, at 8:19 PM,

cpsmith wrote:

> Just when I think I'm doing the right thing.. I push my health back

> I'm finiding it difficult to exercise and I really want to. Not just for the

physical benefits but for the mental lift it gives.

> But right now, I'm just in muscular pain.. worse than usual.

> Chelsea

Your description of more symptoms, especially pain, with exercise is kinda

definitive of CFS or Orthostatic Intolerance as diagnosis.

I attended a meeting early on with researchers from Australia exhibiting symptom

exacerbation in CFS due to mitochondria inadequacies. Mitichondria are the cells

in our bodies that hold and transfer energy.

While I didn't understand alot of what was presented, there have been more

mitochondria studies of CFS patients since 1998. They offered a few ideas for

symptoms of inadequate mitochondria but there was no clear path for healing.

This is typical of research, exciting until discovering no clear path to feeling

better or only if one can afford or tolerate very expensive drugs (Rituximab-

$70,000 per year; Ampligen - $30,000 per year with symptoms returning once not

taking it any more).

The research presented about CFS bodies' mitochondria gave me an inkling why I

suffer more after physical exertion. I never forgot it.

I had also undergone a tilt table test where blood pressure went to 250 over 150

in 6 minutes being upright, stayed around there until I passed out 35 minutes

later. I hallucinated which means I passed out strapped to tilt table. My

heartrate was bizarrely high too.

You don't actually need a tilt table test to know whether your diagnosis is CFS,

FM, OI. Your description of suffering after exercise is sufficient to suppose

you likely have all 3 diagnoses.

If a more definitive diagnosis is desired, an internist or supportive friends

may perform a standing test with CFS, OI protocols:

-Lie down in a quiet, dark office for 20 minutes away from chattering and noise;

-Blood pressure and heartrate are taken upon lying down;

-Two people are needed, one to take blood pressure, one to measure heartrate,

once one is standing again after 20 minutes lying down;

-Digital tools for these are less accurate for expected dramatic changes in

blood pressure and heartrate than the manual Sphygmomanometer.

-If one is up to it, one may stand for up to 30 more minutes while accompanied

the entire time with one person taking blood pressure, one taking heart rate

twice more while standing (close to examining table or a chair in case one

faints).

-Take notes of symptoms, feelings, reactions or have someone with you to write

down for you what you report during this test (without chatting, which distorts

the test).

The numbers reached on a sphygmomanometer are only a part of a diagnosis.

Feelings and reactions during the test are just as relevant.

toni

CF-Alliance.org/

from iPodTouch

[Guest guest]

A key symptom of CFS/ME is post exertional malaise - feeling ill not just tired

after activity so it is most important to pace yourself and not push yourself.

It is frustrating not to be able to do things we want but counterproductive if

it makes us worse :-(

>

> Just when I think I'm doing the right thing.. I push my health back

> I'm finiding it difficult to exercise and I really want to. Not just for the

physical benefits but for the mental lift it gives.

> But right now, I'm just in muscular pain.. worse than usual.

> Chelsea

>