Re: 1 of 5000 Cheney Patients (Legs up)

[Guest guest]

Dear Marcia!

It's the same with me. I often used to sit on chairs with legs up

without thinking about why I did it, only recently I noticed that I

could sit longer when having my legs on an upper level.

BW

" Marcia " <mgrahn@t...> wrote:

> I have been the same way for so long I can't remember, I often eat

on the couch so I can put my legs up while I sit. Have a little thing

I put my feet on at the puter, even a small elevation seems to help.

Interesting.

>

[Guest guest]

Thanks to all for talking about the problem of blood flow in the legs.

I notice that just the women are talking about this. Do any of you

men have a problem with blood flow and pain in the calves of your

legs? I also wonder why my feet don't have a problem, it just the

shins and calves. If blood isn't working there why are the feet OK?

My CFIDS started in 1988 and I always felt better if I elevated my

legs or was lying down. If I didn't, my calves began turning reddish

purple within minutes & hurting. Also, I couldn't stand or walk for

more than about 20 minutes in the early days. Sometimes while

standing in a grocery line, my legs would begin to feel as though the

tissues were coming apart & I would shuffle or jiggle them. I guess

the blood was pooling and expanding. It was so painful that I began

carrying a stool to sit on. By '95 I had to get a wheelchair just to

get around the house. This past winter I have been primarily

bedridden. I've gone through other periods when I've been bedridden

for months.

About a year ago when I went to a new doctor, he had an image scanner

that detects blood flow and shows it on a monitor. It could detect no

blood flow in the calves of my legs. On the monitor they were blue. I

know there has to be SOME blood flow but the scanner couldn't detect

it. Maybe the scanner only detects the microcirculation, which Dr.

Cheney says in his remarks is not working. At first, the doctor

thought something was wrong with the machine, so this was evidently

very unusual for him to see.

I used to post on this list fairly often a few years ago and I would

ask every once in a while if anyone had this particular problem with

pain in the calves of their legs but no one seemed to have it. So, I

am very glad that there is now a test that will check blood flow from

the heart. I have always felt that a problem with blood flow was my

main problem. I hope to get the heart test after I get Dr. Cheney's

tape this summer and understand how it needs to be done so that we

get accurate results. Reading other messages on this topic is very

helpful. Thanks again.

Sandy

" tea lk " <48tealk17@e...> wrote:

> hi i always carrry around a lite weight cane chair to rest on as

walking

> more than several steps can be tiring and it enables me to stay out

versus

> being house bound totally

> ..the other thing is i have always used is a cane chair to rest my

legs

> and feet on while sitting in a chair , as i always felt more

comfortable

> that way versus dangling them or just sitting on a chiar

> ....when i have been in wheel chairs that have no foot/ leg rests

i have

> had to swing my legs over the arm part ( guess being higher is

better than

> being lower and like everyone else did this unconssiuly)

> i have always suspected that i have heart promblems as my

chest pulls

> when i over exert and /or exhusted in the am or just before bed at

> times.....my ekgs show nothing and have had blood work : cross

linkages to

> check for effects on my body but that was normal also(think it has

do to

> with aging of body was told)

> i am going for an echocardiograms so i am printing out the results

from dr

> cheney visit thanx all for sharing .tealk

>

>

> > [Original Message]

> > From: kattemayo <kattemayo@y...>

> > < >

> > Date: 5/16/2005 9:55:11 PM

> > Subject: Re: 1 of 5000 Cheney Patients

> >

> > Adrienne,

> >

> > The trick for me is to sit with feet up every time and way, shape

and

> form possible. Which then buys a little time (and Less misery) for

standing

> up.

> > (for instance, right before you leave home, drive, or go to your

actual

> seat) Even partially up or one up is better than none.

> >

> > If I can pull it off, even crossing leg over knee and massaging

ankle is

> good.

> >

> > When standing, the optimal is to be moving in any way...swaying,

> fidgeting, walking, pacing, and if I must stand in one place, do

ankle

> rotations. (Do this sitting, too).

> >

> > I've done most of these things for years, by instinct or design,

thinking

> it was " low blood pressure " , and Neurally Mediated Hypotension. It

still

> may be these, but now that I know about Q and Ischemia Reperfusion,

I am

> being much more strict.

> >

> > I had gotten to where just sitting in a chair (feet down) created

a

> cascade of utter misery. Dictating my life and where I could go,

apart from

> " other symptoms " .

> >

> > The above plan can be complex if you are very weak,tired and

> brain-fogged. But for me, I see that those very symptoms are being

caused

> by postural positioning.

> >

> > I am not clear if all have the Ischemia Reperfusion Injury, or

especially

> the " bull-whipped " 10% or just me!

> >

> >

> > When researching NMH, I remember about fidgeting, blood pooling

in

> ankles, to cross feet when standing, to sit with knees up when

sitting, etc.

> >

> > Everyone could experiment with the feet up thing, but of

course, " your

> mileage may vary "

> > ( everyone is not the same).

> >

> > Katrina

> >

> >

> >

> > , " Adrienne " <duckblossm@c...>

wrote:

> > > Same here, except not getting worse.

> > > I even got called down in church for not standing when everyone

else

> was. (I don't go there anymore.)

> > > Adrienne

> > > Re: 1 of 5000 Cheney Patients

> > >

> > >

> > > Thank you for this. I am going to see Cheney in June to get

the

> > > cardiac test and had been wondering if I would be given any

results

> > > on that day, which the receptionist was unable to tell me.

> > >

> > > What you say is very interesting to me. I cannot bear to sit

with my

> > > feet down, I have been pulling them up for years, and in

recent

> > > years, this has gotten much worse. Standing still is also

intolerable.

> > >

> > > Helen

> > >

> > >

> > >

> > > >

> > > > My appointment met every expectation (and more) of seeing

Dr.

> > > Cheney that I envisioned for the last 15 years...but with the

> > > inability to do so.

> > > >

> > > > Those years included following/learning tons of " CFS "

research, his

> > > work and other patients closely, and I believed he would have

the

> > > best overview and knowledge...for me...of this disease...how

mine

> > > manifests. Especially because of the damage and complications

I

> > > personally have.

> > > >

> > > > It included exam, extensive history, much, much discussion.

He is

> > > brilliant and fascinating, and fascinated with CFS, and it

seems,

> > > each case. He told me some things about me before I told him.

> > > >

> > > > I was tested on the Impedance machine in his office, and at

the

> > > hospital on the Vivid 7 Echo and an MRS brain scan.

> > > >

> > > > The MRS showed the lactate spike or peak that he had found

in other

> > > patients. He said this would impair the thalamus and could

account

> > > for my sensory overload, and perhaps be connected to my

tremors.

> > > (more, I can't remember).

> > > >

> > > > On the Impedance, I asked if he was seeing what he

expected. He

> > > said yes, yet also said many times , I was unusual.

> > > >

> > > > The test can leave one creamed, as it is evoking the most

difficult

> > > postures for CFS patients. I *think* my tinnitis, which

escalated on

> > > the trip, began the night of the test, but have not discussed

this

> > > with him.

> > > >

> > > > I don't know all of the figures. But my supine reading was

> > > strong...like 8 Liters/min...this is the " Q " ...cardiac

output. 7 and

> > > up is normal.

> > > > At 30 degrees, it dropped to 6.6. At 70 degrees, it was 5,

and

> > > sitting with feet down, it was 5.1.

> > > >

> > > > It also measured Stroke Volume (which is something

different)

> > > and " PEP " ...I forget what that is. They also changed. My

heart rate

> > > remained pretty steady, which I gathered was unusual.

> > > >

> > > > Dr. Cheney told me I am in Diastolic Heart Failure which

was

> > > confirmed by the Echo. It showed " prolonged IVRT and reversed

E/A

> > > mitral flow ratio as well as reversed tissue Doppler (TDI)

e/a

> > > ratio. " (Something was supposed to be up 50%, but it is down

50%)

> > > >

> > > > I was also having Angina or " Angina-like " pain.

> > > > He said I am in danger of having a fatal heart attack.

> > > >

> > > > Yet, was very positive that things can be done to pull me

out of

> > > this.

> > > >

> > > > He says I am in a 10% of patients he is calling the " bull-

whipped

> > > patient " . We are disabled, but forcing Q with FLORINEF,

Electrolytes,

> > > even smoking, masking the Heart Failure. Like, functioning

> > > on " speed " , or adrenaline.

> > > >

> > > > This compensation and masking are then causing " Ischemic

> > > Reperfusion Injury " ...blood rushing through tissue, causing

injury to

> > > every cell in body...can cause " distant organ injury

including the

> > > central nervous system. " ( My search of IR

interesting...alot is

> > > written in " Cyronics " papers, because IR is a big issue there

and

> > > they would certainly want to preserve tissue health)

> > > >

> > > > He says that IR is damaging and disabling me more than the

Heart

> > > Failure and more than those with lower Q. (This may be the

part where

> > > patients who are bedridden with low Q are protecting heart

and

> > > cells.)

> > > >

> > > > I was primarily bedridden for 4-5 years until I went on

Florinef in

> > > 95. I could stand and hold a conversation.

> > > > He says , of this 10%.. " you will kill for Florinef! "

> > > >

> > > > This all fits me in that I can still be " up " more than

many,but

> > > feel increasing damage and pain by doing so. And still try to

get my

> > > feet up when sitting and not ever stand still. I feel utter

and

> > > increasing misery otherwise.

> > > >

> > > > I have tremor, Dystonia, left side weakness, and a bunch

more. I

> > > feel like my neurons are dying, and basicly, he said, they

are. He

> > > said left side may be nerve damage issue, not technically

weakness.

> > > (This fits the experience).

> > > >

> > > > I have " 18 issues " he is working on.

> > > >

> > > > Dr. Cheney said his patients are more disabled than those

in

> > > Peckerman study. This may be connected to fact that Natleson

patients

> > > are required and able to come off of all medication and

supplements

> > > to be in his studies. Dr. Cheney's could not do that.

> > > >

> > > > He said of his (C's) about 30 patients tested:

> > > >

> > > > 10% working, but low Q

> > > >

> > > > 80% disabled, low Q

> > > >

> > > > 10% disabled, " bull-whipped, low Q

> > > >

> > > > All are in Heart Failure.

> > > >

> > > > He said HF in CFS is causing " maldistributing of low blood

volume " .

> > > That many symptoms and damage are this erratic movement of

fluid.

> > > Even my Tinnitis, for instance.

> > > >

> > > > I also had Melanoma in 95, which he says is the highest

incident of

> > > Cancer in CFS! (My Oncologist also told me it is one of few

with

> > > connection to Immune System.)

> > > >

> > > > Dr. Cheney has not ruled out virus as cause, but is not

chasing

> > > bugs at the moment. But addressing the " terrain " . And looking

for

> > > an " organizing principle " that would account for multiple

symptoms.

> > > >

> > > > He also still believes there may be Mitochondrial

Dysfunction...low

> > > energy in cells...in the heart and maybe the brain.

> > > >

> > > > Now, we embark on addressing all of the 18 issues. With

Heart

> > > Failure and IR at the top.

> > > >

> > > > Hawthorne is crucial for HF and other good stuff. And

Magnesium, in

> > > every form.

> > > >

> > > > Buluoke is good for IR and eating up Fibrogen.

> > > >

> > > > COq10 for Microcirculation, to improve several symptoms.

> > > >

> > > > I think poor Microcirculation may account for reactions to

> > > chemicals and thermostat problems?

> > > >

> > > > He put me on Diamox, which is given for Congestive Heart

Failure

> > > and...Altitude Sickness!

> > > >

> > > > That's all I have for now.

> > > >

> > > > Bon Appetit!

> > > >

> > > > Katrina

> > >

> > >

> > >

> > >

> > > This list is intended for patients to share personal

experiences with

> each other, not to give medical advice. If you are interested in

any

> treatment discussed here, please consult your doctor.

> > >

> > >

> > >

> > >

> --------------------------------------------------------------------

--------

> --

> > >

[Guest guest]

Sandy,

Wow, what on Earth did your doctor say about it? I'm trying to picture how you

could have no/little blood flow in your calves, but no problems in your feet!

TO be clear, I have horrendous problems with my feet, multiplied now, but since

early CFS days.

One day 15 years ago, I looked at my feet and they looked nearly black !!!!!!

They were such a dark purple. (Had been a non-smoker for years, BTW)

I remembered a term called " polio feet " , about feet turning purple.

Katrina

> > > > >

> > > > > My appointment met every expectation (and more) of seeing

> Dr.

> > > > Cheney that I envisioned for the last 15 years...but with the

> > > > inability to do so.

> > > > >

> > > > > Those years included following/learning tons of " CFS "

> research, his

> > > > work and other patients closely, and I believed he would have

> the

> > > > best overview and knowledge...for me...of this disease...how

> mine

> > > > manifests. Especially because of the damage and complications

> I

> > > > personally have.

> > > > >

> > > > > It included exam, extensive history, much, much discussion.

> He is

> > > > brilliant and fascinating, and fascinated with CFS, and it

> seems,

> > > > each case. He told me some things about me before I told him.

> > > > >

> > > > > I was tested on the Impedance machine in his office, and at

> the

> > > > hospital on the Vivid 7 Echo and an MRS brain scan.

> > > > >

> > > > > The MRS showed the lactate spike or peak that he had found

> in other

> > > > patients. He said this would impair the thalamus and could

> account

> > > > for my sensory overload, and perhaps be connected to my

> tremors.

> > > > (more, I can't remember).

> > > > >

> > > > > On the Impedance, I asked if he was seeing what he

> expected. He

> > > > said yes, yet also said many times , I was unusual.

> > > > >

> > > > > The test can leave one creamed, as it is evoking the most

> difficult

> > > > postures for CFS patients. I *think* my tinnitis, which

> escalated on

> > > > the trip, began the night of the test, but have not discussed

> this

> > > > with him.

> > > > >

> > > > > I don't know all of the figures. But my supine reading was

> > > > strong...like 8 Liters/min...this is the " Q " ...cardiac

> output. 7 and

> > > > up is normal.

> > > > > At 30 degrees, it dropped to 6.6. At 70 degrees, it was 5,

> and

> > > > sitting with feet down, it was 5.1.

> > > > >

> > > > > It also measured Stroke Volume (which is something

> different)

> > > > and " PEP " ...I forget what that is. They also changed. My

> heart rate

> > > > remained pretty steady, which I gathered was unusual.

> > > > >

> > > > > Dr. Cheney told me I am in Diastolic Heart Failure which

> was

> > > > confirmed by the Echo. It showed " prolonged IVRT and reversed

> E/A

> > > > mitral flow ratio as well as reversed tissue Doppler (TDI)

> e/a

> > > > ratio. " (Something was supposed to be up 50%, but it is down

> 50%)

> > > > >

> > > > > I was also having Angina or " Angina-like " pain.

> > > > > He said I am in danger of having a fatal heart attack.

> > > > >

> > > > > Yet, was very positive that things can be done to pull me

> out of

> > > > this.

> > > > >

> > > > > He says I am in a 10% of patients he is calling the " bull-

> whipped

> > > > patient " . We are disabled, but forcing Q with FLORINEF,

> Electrolytes,

> > > > even smoking, masking the Heart Failure. Like, functioning

> > > > on " speed " , or adrenaline.

> > > > >

> > > > > This compensation and masking are then causing " Ischemic

> > > > Reperfusion Injury " ...blood rushing through tissue, causing

> injury to

> > > > every cell in body...can cause " distant organ injury

> including the

> > > > central nervous system. " ( My search of IR

> interesting...alot is

> > > > written in " Cyronics " papers, because IR is a big issue there

> and

> > > > they would certainly want to preserve tissue health)

> > > > >

> > > > > He says that IR is damaging and disabling me more than the

> Heart

> > > > Failure and more than those with lower Q. (This may be the

> part where

> > > > patients who are bedridden with low Q are protecting heart

> and

> > > > cells.)

> > > > >

> > > > > I was primarily bedridden for 4-5 years until I went on

> Florinef in

> > > > 95. I could stand and hold a conversation.

> > > > > He says , of this 10%.. " you will kill for Florinef! "

> > > > >

> > > > > This all fits me in that I can still be " up " more than

> many,but

> > > > feel increasing damage and pain by doing so. And still try to

> get my

> > > > feet up when sitting and not ever stand still. I feel utter

> and

> > > > increasing misery otherwise.

> > > > >

> > > > > I have tremor, Dystonia, left side weakness, and a bunch

> more. I

> > > > feel like my neurons are dying, and basicly, he said, they

> are. He

> > > > said left side may be nerve damage issue, not technically

> weakness.

> > > > (This fits the experience).

> > > > >

> > > > > I have " 18 issues " he is working on.

> > > > >

> > > > > Dr. Cheney said his patients are more disabled than those

> in

> > > > Peckerman study. This may be connected to fact that Natleson

> patients

> > > > are required and able to come off of all medication and

> supplements

> > > > to be in his studies. Dr. Cheney's could not do that.

> > > > >

> > > > > He said of his (C's) about 30 patients tested:

> > > > >

> > > > > 10% working, but low Q

> > > > >

> > > > > 80% disabled, low Q

> > > > >

> > > > > 10% disabled, " bull-whipped, low Q

> > > > >

> > > > > All are in Heart Failure.

> > > > >

> > > > > He said HF in CFS is causing " maldistributing of low blood

> volume " .

> > > > That many symptoms and damage are this erratic movement of

> fluid.

> > > > Even my Tinnitis, for instance.

> > > > >

> > > > > I also had Melanoma in 95, which he says is the highest

> incident of

> > > > Cancer in CFS! (My Oncologist also told me it is one of few

> with

> > > > connection to Immune System.)

> > > > >

> > > > > Dr. Cheney has not ruled out virus as cause, but is not

> chasing

> > > > bugs at the moment. But addressing the " terrain " . And looking

> for

> > > > an " organizing principle " that would account for multiple

> symptoms.

> > > > >

> > > > > He also still believes there may be Mitochondrial

> Dysfunction...low

> > > > energy in cells...in the heart and maybe the brain.

> > > > >

> > > > > Now, we embark on addressing all of the 18 issues. With

> Heart

> > > > Failure and IR at the top.

> > > > >

> > > > > Hawthorne is crucial for HF and other good stuff. And

> Magnesium, in

> > > > every form.

> > > > >

> > > > > Buluoke is good for IR and eating up Fibrogen.

> > > > >

> > > > > COq10 for Microcirculation, to improve several symptoms.

> > > > >

> > > > > I think poor Microcirculation may account for reactions to

> > > > chemicals and thermostat problems?

> > > > >

> > > > > He put me on Diamox, which is given for Congestive Heart

> Failure

> > > > and...Altitude Sickness!

> > > > >

> > > > > That's all I have for now.

> > > > >

> > > > > Bon Appetit!

> > > > >

> > > > > Katrina

> > > >

> > > >

> > > >

> > > >

> > > > This list is intended for patients to share personal

> experiences with

> > each other, not to give medical advice. If you are interested in

> any

> > treatment discussed here, please consult your doctor.

> > > >

> > > >

> > > >

> > > >

> > --------------------------------------------------------------------

> --------

> > --

> > > >

[Guest guest]

It may be because there are more muscles in the legs than the feet. Since

theres more blood flow to them you might notice circulatory flow problems there

first.

Did the doctor say you have acrocyanosis? This is from a paper on low blood

flows in the lower legs of CFS

" These patients often display acrocyanosis – mottled looking blue and pink skin

in the lower extremities. The mottled appearance is due to reduced peripheral

blood flows and the skin is generally cool to the touch. They also often exhibit

pallor.'

You can find out more by checking out the low blood volume section of

http://www.phoenix-cfs.org/Orthostatic%20Intolerance%20in%20CFS%20-%20Types.htm

Olson <sanols02@...> wrote:

Thanks to all for talking about the problem of blood flow in the legs.

I notice that just the women are talking about this. Do any of you

men have a problem with blood flow and pain in the calves of your

legs? I also wonder why my feet don't have a problem, it just the

shins and calves. If blood isn't working there why are the feet OK?

My CFIDS started in 1988 and I always felt better if I elevated my

legs or was lying down. If I didn't, my calves began turning reddish

purple within minutes & hurting. Also, I couldn't stand or walk for

more than about 20 minutes in the early days. Sometimes while

standing in a grocery line, my legs would begin to feel as though the

tissues were coming apart & I would shuffle or jiggle them. I guess

the blood was pooling and expanding. It was so painful that I began

carrying a stool to sit on. By '95 I had to get a wheelchair just to

get around the house. This past winter I have been primarily

bedridden. I've gone through other periods when I've been bedridden

for months.

About a year ago when I went to a new doctor, he had an image scanner

that detects blood flow and shows it on a monitor. It could detect no

blood flow in the calves of my legs. On the monitor they were blue. I

know there has to be SOME blood flow but the scanner couldn't detect

it. Maybe the scanner only detects the microcirculation, which Dr.

Cheney says in his remarks is not working. At first, the doctor

thought something was wrong with the machine, so this was evidently

very unusual for him to see.

I used to post on this list fairly often a few years ago and I would

ask every once in a while if anyone had this particular problem with

pain in the calves of their legs but no one seemed to have it. So, I

am very glad that there is now a test that will check blood flow from

the heart. I have always felt that a problem with blood flow was my

main problem. I hope to get the heart test after I get Dr. Cheney's

tape this summer and understand how it needs to be done so that we

get accurate results. Reading other messages on this topic is very

helpful. Thanks again.

Sandy

" tea lk " <48tealk17@e...> wrote:

> hi i always carrry around a lite weight cane chair to rest on as

walking

> more than several steps can be tiring and it enables me to stay out

versus

> being house bound totally

> ..the other thing is i have always used is a cane chair to rest my

legs

> and feet on while sitting in a chair , as i always felt more

comfortable

> that way versus dangling them or just sitting on a chiar

> ....when i have been in wheel chairs that have no foot/ leg rests

i have

> had to swing my legs over the arm part ( guess being higher is

better than

> being lower and like everyone else did this unconssiuly)

> i have always suspected that i have heart promblems as my

chest pulls

> when i over exert and /or exhusted in the am or just before bed at

> times.....my ekgs show nothing and have had blood work : cross

linkages to

> check for effects on my body but that was normal also(think it has

do to

> with aging of body was told)

> i am going for an echocardiograms so i am printing out the results

from dr

> cheney visit thanx all for sharing .tealk

>

>

> > [Original Message]

> > From: kattemayo <kattemayo@y...>

> > < >

> > Date: 5/16/2005 9:55:11 PM

> > Subject: Re: 1 of 5000 Cheney Patients

> >

> > Adrienne,

> >

> > The trick for me is to sit with feet up every time and way, shape

and

> form possible. Which then buys a little time (and Less misery) for

standing

> up.

> > (for instance, right before you leave home, drive, or go to your

actual

> seat) Even partially up or one up is better than none.

> >

> > If I can pull it off, even crossing leg over knee and massaging

ankle is

> good.

> >

> > When standing, the optimal is to be moving in any way...swaying,

> fidgeting, walking, pacing, and if I must stand in one place, do

ankle

> rotations. (Do this sitting, too).

> >

> > I've done most of these things for years, by instinct or design,

thinking

> it was " low blood pressure " , and Neurally Mediated Hypotension. It

still

> may be these, but now that I know about Q and Ischemia Reperfusion,

I am

> being much more strict.

> >

> > I had gotten to where just sitting in a chair (feet down) created

a

> cascade of utter misery. Dictating my life and where I could go,

apart from

> " other symptoms " .

> >

> > The above plan can be complex if you are very weak,tired and

> brain-fogged. But for me, I see that those very symptoms are being

caused

> by postural positioning.

> >

> > I am not clear if all have the Ischemia Reperfusion Injury, or

especially

> the " bull-whipped " 10% or just me!

> >

> >

> > When researching NMH, I remember about fidgeting, blood pooling

in

> ankles, to cross feet when standing, to sit with knees up when

sitting, etc.

> >

> > Everyone could experiment with the feet up thing, but of

course, " your

> mileage may vary "

> > ( everyone is not the same).

> >

> > Katrina

> >

> >

> >

> > , " Adrienne " <duckblossm@c...>

wrote:

> > > Same here, except not getting worse.

> > > I even got called down in church for not standing when everyone

else

> was. (I don't go there anymore.)

> > > Adrienne

> > > Re: 1 of 5000 Cheney Patients

> > >

> > >

> > > Thank you for this. I am going to see Cheney in June to get

the

> > > cardiac test and had been wondering if I would be given any

results

> > > on that day, which the receptionist was unable to tell me.

> > >

> > > What you say is very interesting to me. I cannot bear to sit

with my

> > > feet down, I have been pulling them up for years, and in

recent

> > > years, this has gotten much worse. Standing still is also

intolerable.

> > >

> > > Helen

> > >

> > >

> > >

> > > >

> > > > My appointment met every expectation (and more) of seeing

Dr.

> > > Cheney that I envisioned for the last 15 years...but with the

> > > inability to do so.

> > > >

> > > > Those years included following/learning tons of " CFS "

research, his

> > > work and other patients closely, and I believed he would have

the

> > > best overview and knowledge...for me...of this disease...how

mine

> > > manifests. Especially because of the damage and complications

I

> > > personally have.

> > > >

> > > > It included exam, extensive history, much, much discussion.

He is

> > > brilliant and fascinating, and fascinated with CFS, and it

seems,

> > > each case. He told me some things about me before I told him.

> > > >

> > > > I was tested on the Impedance machine in his office, and at

the

> > > hospital on the Vivid 7 Echo and an MRS brain scan.

> > > >

> > > > The MRS showed the lactate spike or peak that he had found

in other

> > > patients. He said this would impair the thalamus and could

account

> > > for my sensory overload, and perhaps be connected to my

tremors.

> > > (more, I can't remember).

> > > >

> > > > On the Impedance, I asked if he was seeing what he

expected. He

> > > said yes, yet also said many times , I was unusual.

> > > >

> > > > The test can leave one creamed, as it is evoking the most

difficult

> > > postures for CFS patients. I *think* my tinnitis, which

escalated on

> > > the trip, began the night of the test, but have not discussed

this

> > > with him.

> > > >

> > > > I don't know all of the figures. But my supine reading was

> > > strong...like 8 Liters/min...this is the " Q " ...cardiac

output. 7 and

> > > up is normal.

> > > > At 30 degrees, it dropped to 6.6. At 70 degrees, it was 5,

and

> > > sitting with feet down, it was 5.1.

> > > >

> > > > It also measured Stroke Volume (which is something

different)

> > > and " PEP " ...I forget what that is. They also changed. My

heart rate

> > > remained pretty steady, which I gathered was unusual.

> > > >

> > > > Dr. Cheney told me I am in Diastolic Heart Failure which

was

> > > confirmed by the Echo. It showed " prolonged IVRT and reversed

E/A

> > > mitral flow ratio as well as reversed tissue Doppler (TDI)

e/a

> > > ratio. " (Something was supposed to be up 50%, but it is down

50%)

> > > >

> > > > I was also having Angina or " Angina-like " pain.

> > > > He said I am in danger of having a fatal heart attack.

> > > >

> > > > Yet, was very positive that things can be done to pull me

out of

> > > this.

> > > >

> > > > He says I am in a 10% of patients he is calling the " bull-

whipped

> > > patient " . We are disabled, but forcing Q with FLORINEF,

Electrolytes,

> > > even smoking, masking the Heart Failure. Like, functioning

> > > on " speed " , or adrenaline.

> > > >

> > > > This compensation and masking are then causing " Ischemic

> > > Reperfusion Injury " ...blood rushing through tissue, causing

injury to

> > > every cell in body...can cause " distant organ injury

including the

> > > central nervous system. " ( My search of IR

interesting...alot is

> > > written in " Cyronics " papers, because IR is a big issue there

and

> > > they would certainly want to preserve tissue health)

> > > >

> > > > He says that IR is damaging and disabling me more than the

Heart

> > > Failure and more than those with lower Q. (This may be the

part where

> > > patients who are bedridden with low Q are protecting heart

and

> > > cells.)

> > > >

> > > > I was primarily bedridden for 4-5 years until I went on

Florinef in

> > > 95. I could stand and hold a conversation.

> > > > He says , of this 10%.. " you will kill for Florinef! "

> > > >

> > > > This all fits me in that I can still be " up " more than

many,but

> > > feel increasing damage and pain by doing so. And still try to

get my

> > > feet up when sitting and not ever stand still. I feel utter

and

> > > increasing misery otherwise.

> > > >

> > > > I have tremor, Dystonia, left side weakness, and a bunch

more. I

> > > feel like my neurons are dying, and basicly, he said, they

are. He

> > > said left side may be nerve damage issue, not technically

weakness.

> > > (This fits the experience).

> > > >

> > > > I have " 18 issues " he is working on.

> > > >

> > > > Dr. Cheney said his patients are more disabled than those

in

> > > Peckerman study. This may be connected to fact that Natleson

patients

> > > are required and able to come off of all medication and

supplements

> > > to be in his studies. Dr. Cheney's could not do that.

> > > >

> > > > He said of his (C's) about 30 patients tested:

> > > >

> > > > 10% working, but low Q

> > > >

> > > > 80% disabled, low Q

> > > >

> > > > 10% disabled, " bull-whipped, low Q

> > > >

> > > > All are in Heart Failure.

> > > >

> > > > He said HF in CFS is causing " maldistributing of low blood

volume " .

> > > That many symptoms and damage are this erratic movement of

fluid.

> > > Even my Tinnitis, for instance.

> > > >

> > > > I also had Melanoma in 95, which he says is the highest

incident of

> > > Cancer in CFS! (My Oncologist also told me it is one of few

with

> > > connection to Immune System.)

> > > >

> > > > Dr. Cheney has not ruled out virus as cause, but is not

chasing

> > > bugs at the moment. But addressing the " terrain " . And looking

for

> > > an " organizing principle " that would account for multiple

symptoms.

> > > >

> > > > He also still believes there may be Mitochondrial

Dysfunction...low

> > > energy in cells...in the heart and maybe the brain.

> > > >

> > > > Now, we embark on addressing all of the 18 issues. With

Heart

> > > Failure and IR at the top.

> > > >

> > > > Hawthorne is crucial for HF and other good stuff. And

Magnesium, in

> > > every form.

> > > >

> > > > Buluoke is good for IR and eating up Fibrogen.

> > > >

> > > > COq10 for Microcirculation, to improve several symptoms.

> > > >

> > > > I think poor Microcirculation may account for reactions to

> > > chemicals and thermostat problems?

> > > >

> > > > He put me on Diamox, which is given for Congestive Heart

Failure

> > > and...Altitude Sickness!

> > > >

> > > > That's all I have for now.

> > > >

> > > > Bon Appetit!

> > > >

> > > > Katrina

> > >

> > >

> > >

> > >

> > > This list is intended for patients to share personal

experiences with

> each other, not to give medical advice. If you are interested in

any

> treatment discussed here, please consult your doctor.

> > >

> > >

> > >

> > >

> --------------------------------------------------------------------

--------

> --

> > >

[Guest guest]

Sandy I have pain in the calves of my legs too, and purple veins there in

strange places, the pain is not muscular and took me years to figure out it must

be vascular. I am more mobile than many, I force myself to walk a mile every

night with my diabetic husb cause he just won't do it if I don't, took months to

be able to do it without a lot worse pain, now its more tolerable, but I can NOT

stand in lines or stand very long doing anything. When I wash dishes I run water

and put some in soaking in it, then set awhile, come back and wash a few, put a

few more in to soak, etc so it takes me about an hour and 1/2 to wash a few

dishes. I can cope with being on my feet for awhile IF I " m moving, if I'm

standing I'm in trouble.

Marcia

Re: 1 of 5000 Cheney Patients

> > >

> > >

> > > Thank you for this. I am going to see Cheney in June to get

the

> > > cardiac test and had been wondering if I would be given any

results

> > > on that day, which the receptionist was unable to tell me.

> > >

> > > What you say is very interesting to me. I cannot bear to sit

with my

> > > feet down, I have been pulling them up for years, and in

recent

> > > years, this has gotten much worse. Standing still is also

intolerable.

> > >

> > > Helen

> > >

> > >

> > >

> > > >

> > > > My appointment met every expectation (and more) of seeing

Dr.

> > > Cheney that I envisioned for the last 15 years...but with the

> > > inability to do so.

> > > >

> > > > Those years included following/learning tons of " CFS "

research, his

> > > work and other patients closely, and I believed he would have

the

> > > best overview and knowledge...for me...of this disease...how

mine

> > > manifests. Especially because of the damage and complications

I

> > > personally have.

> > > >

> > > > It included exam, extensive history, much, much discussion.

He is

> > > brilliant and fascinating, and fascinated with CFS, and it

seems,

> > > each case. He told me some things about me before I told him.

> > > >

> > > > I was tested on the Impedance machine in his office, and at

the

> > > hospital on the Vivid 7 Echo and an MRS brain scan.

> > > >

> > > > The MRS showed the lactate spike or peak that he had found

in other

> > > patients. He said this would impair the thalamus and could

account

> > > for my sensory overload, and perhaps be connected to my

tremors.

> > > (more, I can't remember).

> > > >

> > > > On the Impedance, I asked if he was seeing what he

expected. He

> > > said yes, yet also said many times , I was unusual.

> > > >

> > > > The test can leave one creamed, as it is evoking the most

difficult

> > > postures for CFS patients. I *think* my tinnitis, which

escalated on

> > > the trip, began the night of the test, but have not discussed

this

> > > with him.

> > > >

> > > > I don't know all of the figures. But my supine reading was

> > > strong...like 8 Liters/min...this is the " Q " ...cardiac

output. 7 and

> > > up is normal.

> > > > At 30 degrees, it dropped to 6.6. At 70 degrees, it was 5,

and

> > > sitting with feet down, it was 5.1.

> > > >

> > > > It also measured Stroke Volume (which is something

different)

> > > and " PEP " ...I forget what that is. They also changed. My

heart rate

> > > remained pretty steady, which I gathered was unusual.

> > > >

> > > > Dr. Cheney told me I am in Diastolic Heart Failure which

was

> > > confirmed by the Echo. It showed " prolonged IVRT and reversed

E/A

> > > mitral flow ratio as well as reversed tissue Doppler (TDI)

e/a

> > > ratio. " (Something was supposed to be up 50%, but it is down

50%)

> > > >

> > > > I was also having Angina or " Angina-like " pain.

> > > > He said I am in danger of having a fatal heart attack.

> > > >

> > > > Yet, was very positive that things can be done to pull me

out of

> > > this.

> > > >

> > > > He says I am in a 10% of patients he is calling the " bull-

whipped

> > > patient " . We are disabled, but forcing Q with FLORINEF,

Electrolytes,

> > > even smoking, masking the Heart Failure. Like, functioning

> > > on " speed " , or adrenaline.

> > > >

> > > > This compensation and masking are then causing " Ischemic

> > > Reperfusion Injury " ...blood rushing through tissue, causing

injury to

> > > every cell in body...can cause " distant organ injury

including the

> > > central nervous system. " ( My search of IR

interesting...alot is

> > > written in " Cyronics " papers, because IR is a big issue there

and

> > > they would certainly want to preserve tissue health)

> > > >

> > > > He says that IR is damaging and disabling me more than the

Heart

> > > Failure and more than those with lower Q. (This may be the

part where

> > > patients who are bedridden with low Q are protecting heart

and

> > > cells.)

> > > >

> > > > I was primarily bedridden for 4-5 years until I went on

Florinef in

> > > 95. I could stand and hold a conversation.

> > > > He says , of this 10%.. " you will kill for Florinef! "

> > > >

> > > > This all fits me in that I can still be " up " more than

many,but

> > > feel increasing damage and pain by doing so. And still try to

get my

> > > feet up when sitting and not ever stand still. I feel utter

and

> > > increasing misery otherwise.

> > > >

> > > > I have tremor, Dystonia, left side weakness, and a bunch

more. I

> > > feel like my neurons are dying, and basicly, he said, they

are. He

> > > said left side may be nerve damage issue, not technically

weakness.

> > > (This fits the experience).

> > > >

> > > > I have " 18 issues " he is working on.

> > > >

> > > > Dr. Cheney said his patients are more disabled than those

in

> > > Peckerman study. This may be connected to fact that Natleson

patients

> > > are required and able to come off of all medication and

supplements

> > > to be in his studies. Dr. Cheney's could not do that.

> > > >

> > > > He said of his (C's) about 30 patients tested:

> > > >

> > > > 10% working, but low Q

> > > >

> > > > 80% disabled, low Q

> > > >

> > > > 10% disabled, " bull-whipped, low Q

> > > >

> > > > All are in Heart Failure.

> > > >

> > > > He said HF in CFS is causing " maldistributing of low blood

volume " .

> > > That many symptoms and damage are this erratic movement of

fluid.

> > > Even my Tinnitis, for instance.

> > > >

> > > > I also had Melanoma in 95, which he says is the highest

incident of

> > > Cancer in CFS! (My Oncologist also told me it is one of few

with

> > > connection to Immune System.)

> > > >

> > > > Dr. Cheney has not ruled out virus as cause, but is not

chasing

> > > bugs at the moment. But addressing the " terrain " . And looking

for

> > > an " organizing principle " that would account for multiple

symptoms.

> > > >

> > > > He also still believes there may be Mitochondrial

Dysfunction...low

> > > energy in cells...in the heart and maybe the brain.

> > > >

> > > > Now, we embark on addressing all of the 18 issues. With

Heart

> > > Failure and IR at the top.

> > > >

> > > > Hawthorne is crucial for HF and other good stuff. And

Magnesium, in

> > > every form.

> > > >

> > > > Buluoke is good for IR and eating up Fibrogen.

> > > >

> > > > COq10 for Microcirculation, to improve several symptoms.

> > > >

> > > > I think poor Microcirculation may account for reactions to

> > > chemicals and thermostat problems?

> > > >

> > > > He put me on Diamox, which is given for Congestive Heart

Failure

> > > and...Altitude Sickness!

> > > >

> > > > That's all I have for now.

> > > >

> > > > Bon Appetit!

> > > >

> > > > Katrina

> > >

> > >

> > >

> > >

> > > This list is intended for patients to share personal

experiences with

> each other, not to give medical advice. If you are interested in

any

> treatment discussed here, please consult your doctor.

> > >

> > >

> > >

> > >

> --------------------------------------------------------------------

--------

> --

> > >

[Guest guest]

Hi Marcia & Sandy,

I used to have an odd but very annoying pain in my calves, foot soles, the

inside of my hands and certain parts of my back.

The pains came and went - but it were always the same spots that hurt.

It was a kind of burning pain just below the skin I would say. Sometimes it

hurt terribly and I could hardly stand on my feet.

I never figured out what it was and I never got an answer from MDs either.

I did know though that these pains were related to what I had eaten before -

especially fried foods.

Since I started a gluten free diet last August I hardly ever get these pains

anymore although I eat fried stuff once in a while.

I don't know if the pains you have are similar to the ones I had.

Allllll the best,

Yannic

Re: 1 of 5000 Cheney Patients

> > > >

> > > >

> > > > Thank you for this. I am going to see Cheney in June to get

> the

> > > > cardiac test and had been wondering if I would be given any

> results

> > > > on that day, which the receptionist was unable to tell me.

> > > >

> > > > What you say is very interesting to me. I cannot bear to sit

> with my

> > > > feet down, I have been pulling them up for years, and in

> recent

> > > > years, this has gotten much worse. Standing still is also

> intolerable.

> > > >

> > > > Helen

> > > >

> > > >

> > > >

> > > > >

> > > > > My appointment met every expectation (and more) of seeing

> Dr.

> > > > Cheney that I envisioned for the last 15 years...but with the

> > > > inability to do so.

> > > > >

> > > > > Those years included following/learning tons of " CFS "

> research, his

> > > > work and other patients closely, and I believed he would have

> the

> > > > best overview and knowledge...for me...of this disease...how

> mine

> > > > manifests. Especially because of the damage and complications

> I

> > > > personally have.

> > > > >

> > > > > It included exam, extensive history, much, much discussion.

> He is

> > > > brilliant and fascinating, and fascinated with CFS, and it

> seems,

> > > > each case. He told me some things about me before I told him.

> > > > >

> > > > > I was tested on the Impedance machine in his office, and at

> the

> > > > hospital on the Vivid 7 Echo and an MRS brain scan.

> > > > >

> > > > > The MRS showed the lactate spike or peak that he had found

> in other

> > > > patients. He said this would impair the thalamus and could

> account

> > > > for my sensory overload, and perhaps be connected to my

> tremors.

> > > > (more, I can't remember).

> > > > >

> > > > > On the Impedance, I asked if he was seeing what he

> expected. He

> > > > said yes, yet also said many times , I was unusual.

> > > > >

> > > > > The test can leave one creamed, as it is evoking the most

> difficult

> > > > postures for CFS patients. I *think* my tinnitis, which

> escalated on

> > > > the trip, began the night of the test, but have not discussed

> this

> > > > with him.

> > > > >

> > > > > I don't know all of the figures. But my supine reading was

> > > > strong...like 8 Liters/min...this is the " Q " ...cardiac

> output. 7 and

> > > > up is normal.

> > > > > At 30 degrees, it dropped to 6.6. At 70 degrees, it was 5,

> and

> > > > sitting with feet down, it was 5.1.

> > > > >

> > > > > It also measured Stroke Volume (which is something

> different)

> > > > and " PEP " ...I forget what that is. They also changed. My

> heart rate

> > > > remained pretty steady, which I gathered was unusual.

> > > > >

> > > > > Dr. Cheney told me I am in Diastolic Heart Failure which

> was

> > > > confirmed by the Echo. It showed " prolonged IVRT and reversed

> E/A

> > > > mitral flow ratio as well as reversed tissue Doppler (TDI)

> e/a

> > > > ratio. " (Something was supposed to be up 50%, but it is down

> 50%)

> > > > >

> > > > > I was also having Angina or " Angina-like " pain.

> > > > > He said I am in danger of having a fatal heart attack.

> > > > >

> > > > > Yet, was very positive that things can be done to pull me

> out of

> > > > this.

> > > > >

> > > > > He says I am in a 10% of patients he is calling the " bull-

> whipped

> > > > patient " . We are disabled, but forcing Q with FLORINEF,

> Electrolytes,

> > > > even smoking, masking the Heart Failure. Like, functioning

> > > > on " speed " , or adrenaline.

> > > > >

> > > > > This compensation and masking are then causing " Ischemic

> > > > Reperfusion Injury " ...blood rushing through tissue, causing

> injury to

> > > > every cell in body...can cause " distant organ injury

> including the

> > > > central nervous system. " ( My search of IR

> interesting...alot is

> > > > written in " Cyronics " papers, because IR is a big issue there

> and

> > > > they would certainly want to preserve tissue health)

> > > > >

> > > > > He says that IR is damaging and disabling me more than the

> Heart

> > > > Failure and more than those with lower Q. (This may be the

> part where

> > > > patients who are bedridden with low Q are protecting heart

> and

> > > > cells.)

> > > > >

> > > > > I was primarily bedridden for 4-5 years until I went on

> Florinef in

> > > > 95. I could stand and hold a conversation.

> > > > > He says , of this 10%.. " you will kill for Florinef! "

> > > > >

> > > > > This all fits me in that I can still be " up " more than

> many,but

> > > > feel increasing damage and pain by doing so. And still try to

> get my

> > > > feet up when sitting and not ever stand still. I feel utter

> and

> > > > increasing misery otherwise.

> > > > >

> > > > > I have tremor, Dystonia, left side weakness, and a bunch

> more. I

> > > > feel like my neurons are dying, and basicly, he said, they

> are. He

> > > > said left side may be nerve damage issue, not technically

> weakness.

> > > > (This fits the experience).

> > > > >

> > > > > I have " 18 issues " he is working on.

> > > > >

> > > > > Dr. Cheney said his patients are more disabled than those

> in

> > > > Peckerman study. This may be connected to fact that Natleson

> patients

> > > > are required and able to come off of all medication and

> supplements

> > > > to be in his studies. Dr. Cheney's could not do that.

> > > > >

> > > > > He said of his (C's) about 30 patients tested:

> > > > >

> > > > > 10% working, but low Q

> > > > >

> > > > > 80% disabled, low Q

> > > > >

> > > > > 10% disabled, " bull-whipped, low Q

> > > > >

> > > > > All are in Heart Failure.

> > > > >

> > > > > He said HF in CFS is causing " maldistributing of low blood

> volume " .

> > > > That many symptoms and damage are this erratic movement of

> fluid.

> > > > Even my Tinnitis, for instance.

> > > > >

> > > > > I also had Melanoma in 95, which he says is the highest

> incident of

> > > > Cancer in CFS! (My Oncologist also told me it is one of few

> with

> > > > connection to Immune System.)

> > > > >

> > > > > Dr. Cheney has not ruled out virus as cause, but is not

> chasing

> > > > bugs at the moment. But addressing the " terrain " . And looking

> for

> > > > an " organizing principle " that would account for multiple

> symptoms.

> > > > >

> > > > > He also still believes there may be Mitochondrial

> Dysfunction...low

> > > > energy in cells...in the heart and maybe the brain.

> > > > >

> > > > > Now, we embark on addressing all of the 18 issues. With

> Heart

> > > > Failure and IR at the top.

> > > > >

> > > > > Hawthorne is crucial for HF and other good stuff. And

> Magnesium, in

> > > > every form.

> > > > >

> > > > > Buluoke is good for IR and eating up Fibrogen.

> > > > >

> > > > > COq10 for Microcirculation, to improve several symptoms.

> > > > >

> > > > > I think poor Microcirculation may account for reactions to

> > > > chemicals and thermostat problems?

> > > > >

> > > > > He put me on Diamox, which is given for Congestive Heart

> Failure

> > > > and...Altitude Sickness!

> > > > >

> > > > > That's all I have for now.

> > > > >

> > > > > Bon Appetit!

> > > > >

> > > > > Katrina

> > > >

> > > >

> > > >

> > > >

> > > > This list is intended for patients to share personal

> experiences with

> > each other, not to give medical advice. If you are interested in

> any

> > treatment discussed here, please consult your doctor.

> > > >

> > > >

> > > >

> > > >

> > --------------------------------------------------------------------

> --------

> > --

> > > >

[Guest guest]

I have got a stool I sit on to do dishes or chop vegetables when

cooking and it helps a lot.

Sitting here at computer,in my usual position, with heels on edge of

chair I'm sitting in, I reach around my bent legs to type. I'm the

only person I know who sits like this at the computer, but it works

for me. And now I know why I instinctively do it, thanks to Katrina's

post!

Helen

> Sandy I have pain in the calves of my legs too, and purple veins

there in strange places, the pain is not muscular and took me years

to figure out it must be vascular. I am more mobile than many, I

force myself to walk a mile every night with my diabetic husb cause

he just won't do it if I don't, took months to be able to do it

without a lot worse pain, now its more tolerable, but I can NOT stand

in lines or stand very long doing anything. When I wash dishes I run

water and put some in soaking in it, then set awhile, come back and

wash a few, put a few more in to soak, etc so it takes me about an

hour and 1/2 to wash a few dishes. I can cope with being on my feet

for awhile IF I " m moving, if I'm standing I'm in trouble.

>

> Marcia

[Guest guest]

I do exactly the same at the computer! (Well - when

legs aren't up on desk to side of it). Can't manage

stools, though - legs too dangling - so I sit on them

on a chair to chop veg instead... Also terrify any

driving-companion on long journeys as just have to put

legs on dashboard after a while!

--- helen9jora <helen9jora@...> wrote:

---------------------------------

I have got a stool I sit on to do dishes or chop

vegetables when

cooking and it helps a lot.

Sitting here at computer,in my usual position, with

heels on edge of

chair I'm sitting in, I reach around my bent legs to

type. I'm the

only person I know who sits like this at the computer,

but it works

for me. And now I know why I instinctively do it,

thanks to Katrina's

post!

Helen

> Sandy I have pain in the calves of my legs too, and

purple veins

there in strange places, the pain is not muscular and

took me years

to figure out it must be vascular. I am more mobile

than many, I

force myself to walk a mile every night with my

diabetic husb cause

he just won't do it if I don't, took months to be able

to do it

without a lot worse pain, now its more tolerable, but

I can NOT stand

in lines or stand very long doing anything. When I

wash dishes I run

water and put some in soaking in it, then set awhile,

come back and

wash a few, put a few more in to soak, etc so it takes

me about an

hour and 1/2 to wash a few dishes. I can cope with

being on my feet

for awhile IF I " m moving, if I'm standing I'm in

trouble.

>

> Marcia

This list is intended for patients to share personal

experiences with each other, not to give medical

advice. If you are interested in any treatment

discussed here, please consult your doctor.

---------------------------------

[Guest guest]

Thanks, Katrina, Cort and all who responded to my post,

Katrina wrote:

" Wow, what on Earth did your doctor say about it? I'm trying to

picture how you could have no/little blood flow in your calves, but

no problems in your feet! "

My doctor who was confused and had no idea why it was happening, just

said that he was surprised to see that the imaging scanner was

showing no blood flow. The scan was done at the end of my appt. so he

then left the room. Of course, I was saying, " It's showing you what I

have been saying, the blood isn't circulating in my legs. " I was

thrilled that there was something that was showing what I was feeling.

cort johnson wrote:

> It may be because there are more muscles in the legs than the

>feet. Since theres more blood flow to them you might notice

>circulatory flow problems there first.

This is an excellent explanation. My legs and feet are cold much

of the time & both turn reddish purple if not elevated, but only the

calves of my legs are in pain, so your explanation helps to clarify

that.

> Did the doctor say you have acrocyanosis? This is from a paper on

>low blood flows in the lower legs of CFS

No, he has offered no explanation. I have even brought it up since

then, but he seems to have no ideas about it. I will read more about

acrocyanosis. I will check it out on your site. Thanks again.

When I wake up in the morning, my legs, and muscles in general,

usually feel and look OK. But as soon as I just walk to the bathroom

and back, the calves begin to hurt. That pain escalates rapidly with

any few steps I take during the day. So, I have to have lots of rest

time. I have a rolling " architects " chair in the kitchen with a foot

rest. And I have a stool in the shower and one in front of the basin

in the bathroom because, yes, standing causes more pain than walking.

Also, like others on the list, if my legs dangle, that makes it

worse. When I got my wheelchair, the man who brought it told me that

the backs of the thighs cannot be pressing on the seat or the

pressure interferes with blood flow. He adjusted each foot rest so

that my knees were slightly above the seat. Also, as others have

said, having the legs up - on a dashboard or desk - higher than the

heart helps the most with relieving the pain. But, any muscles I'm

using - when cooking or cleaning the kitchen, using arm and shoulder

muscles - they too become sore very quickly. Then it takes hours of

rest to recover. That's why I think that Dr. Cheney's explanation of

the microcirculation system being affected by the cardiac issues

applies here and as he said that also affects digestion and other

systems.

Sandy

> " These patients often display acrocyanosis – mottled looking blue

and pink skin in the lower extremities. The mottled appearance is due

to reduced peripheral blood flows and the skin is generally cool to

the touch. They also often exhibit pallor.'

>

> You can find out more by checking out the low blood volume section

of

> http://www.phoenix-cfs.org/Orthostatic%20Intolerance%20in%20CFS%20-%

20Types.htm

>

>

> Olson <sanols02@y...> wrote:

> Thanks to all for talking about the problem of blood flow in the

legs.

> I notice that just the women are talking about this. Do any of you

> men have a problem with blood flow and pain in the calves of your

> legs? I also wonder why my feet don't have a problem, it just the

> shins and calves. If blood isn't working there why are the feet OK?

>

> My CFIDS started in 1988 and I always felt better if I elevated my

> legs or was lying down. If I didn't, my calves began turning

reddish

> purple within minutes & hurting. Also, I couldn't stand or walk for

> more than about 20 minutes in the early days. Sometimes while

> standing in a grocery line, my legs would begin to feel as though

the

> tissues were coming apart & I would shuffle or jiggle them. I guess

> the blood was pooling and expanding. It was so painful that I began

> carrying a stool to sit on. By '95 I had to get a wheelchair just

to

> get around the house. This past winter I have been primarily

> bedridden. I've gone through other periods when I've been bedridden

> for months.

>

> About a year ago when I went to a new doctor, he had an image

scanner

> that detects blood flow and shows it on a monitor. It could detect

no

> blood flow in the calves of my legs. On the monitor they were blue.

I

> know there has to be SOME blood flow but the scanner couldn't

detect

> it. Maybe the scanner only detects the microcirculation, which Dr.

> Cheney says in his remarks is not working. At first, the doctor

> thought something was wrong with the machine, so this was evidently

> very unusual for him to see.

>

> I used to post on this list fairly often a few years ago and I would

> ask every once in a while if anyone had this particular problem

with

> pain in the calves of their legs but no one seemed to have it. So,

I

> am very glad that there is now a test that will check blood flow

from

> the heart. I have always felt that a problem with blood flow was my

> main problem. I hope to get the heart test after I get Dr. Cheney's

> tape this summer and understand how it needs to be done so that we

> get accurate results. Reading other messages on this topic is very

> helpful. Thanks again.

>

> Sandy

>

> " tea lk " <48tealk17@e...> wrote:

> > hi i always carrry around a lite weight cane chair to rest on

as

> walking

> > more than several steps can be tiring and it enables me to stay

out

> versus

> > being house bound totally

> > ..the other thing is i have always used is a cane chair to rest

my

> legs

> > and feet on while sitting in a chair , as i always felt more

> comfortable

> > that way versus dangling them or just sitting on a chiar

> > ....when i have been in wheel chairs that have no foot/ leg

rests

> i have

> > had to swing my legs over the arm part ( guess being higher is

> better than

> > being lower and like everyone else did this unconssiuly)

> > i have always suspected that i have heart promblems as my

> chest pulls

> > when i over exert and /or exhusted in the am or just before bed at

> > times.....my ekgs show nothing and have had blood work : cross

> linkages to

> > check for effects on my body but that was normal also(think it

has

> do to

> > with aging of body was told)

> > i am going for an echocardiograms so i am printing out the

results

> from dr

> > cheney visit thanx all for sharing .tealk

> >

> >

> > > [Original Message]

> > > From: kattemayo <kattemayo@y...>

> > > < >

> > > Date: 5/16/2005 9:55:11 PM

> > > Subject: Re: 1 of 5000 Cheney Patients

> > >

> > > Adrienne,

> > >

> > > The trick for me is to sit with feet up every time and way,

shape

> and

> > form possible. Which then buys a little time (and Less misery)

for

> standing

> > up.

> > > (for instance, right before you leave home, drive, or go to

your

> actual

> > seat) Even partially up or one up is better than none.

> > >

> > > If I can pull it off, even crossing leg over knee and massaging

> ankle is

> > good.

> > >

> > > When standing, the optimal is to be moving in any way...swaying,

> > fidgeting, walking, pacing, and if I must stand in one place, do

> ankle

> > rotations. (Do this sitting, too).

> > >

> > > I've done most of these things for years, by instinct or

design,

> thinking

> > it was " low blood pressure " , and Neurally Mediated Hypotension.

It

> still

> > may be these, but now that I know about Q and Ischemia

Reperfusion,

> I am

> > being much more strict.

> > >

> > > I had gotten to where just sitting in a chair (feet down)

created

> a

> > cascade of utter misery. Dictating my life and where I could go,

> apart from

> > " other symptoms " .

> > >

> > > The above plan can be complex if you are very weak,tired and

> > brain-fogged. But for me, I see that those very symptoms are

being

> caused

> > by postural positioning.

> > >

> > > I am not clear if all have the Ischemia Reperfusion Injury, or

> especially

> > the " bull-whipped " 10% or just me!

> > >

> > >

> > > When researching NMH, I remember about fidgeting, blood

pooling

> in

> > ankles, to cross feet when standing, to sit with knees up when

> sitting, etc.

> > >

> > > Everyone could experiment with the feet up thing, but of

> course, " your

> > mileage may vary "

> > > ( everyone is not the same).

> > >

> > > Katrina

> > >

> > >

> > >

> > > , " Adrienne " <duckblossm@c...>

> wrote:

> > > > Same here, except not getting worse.

> > > > I even got called down in church for not standing when

everyone

> else

> > was. (I don't go there anymore.)

> > > > Adrienne

> > > > Re: 1 of 5000 Cheney Patients

> > > >

> > > >

> > > > Thank you for this. I am going to see Cheney in June to get

> the

> > > > cardiac test and had been wondering if I would be given any

> results

> > > > on that day, which the receptionist was unable to tell me.

> > > >

> > > > What you say is very interesting to me. I cannot bear to

sit

> with my

> > > > feet down, I have been pulling them up for years, and in

> recent

> > > > years, this has gotten much worse. Standing still is also

> intolerable.

> > > >

> > > > Helen

> > > >

> > > >

> > > >

> > > > >

> > > > > My appointment met every expectation (and more) of seeing

> Dr.

> > > > Cheney that I envisioned for the last 15 years...but with

the

> > > > inability to do so.

> > > > >

> > > > > Those years included following/learning tons of " CFS "

> research, his

> > > > work and other patients closely, and I believed he would

have

> the

> > > > best overview and knowledge...for me...of this

disease...how

> mine

> > > > manifests. Especially because of the damage and

complications

> I

> > > > personally have.

> > > > >

> > > > > It included exam, extensive history, much, much

discussion.

> He is

> > > > brilliant and fascinating, and fascinated with CFS, and it

> seems,

> > > > each case. He told me some things about me before I told

him.

> > > > >

> > > > > I was tested on the Impedance machine in his office, and

at

> the

> > > > hospital on the Vivid 7 Echo and an MRS brain scan.

> > > > >

> > > > > The MRS showed the lactate spike or peak that he had

found

> in other

> > > > patients. He said this would impair the thalamus and could

> account

> > > > for my sensory overload, and perhaps be connected to my

> tremors.

> > > > (more, I can't remember).

> > > > >

> > > > > On the Impedance, I asked if he was seeing what he

> expected. He

> > > > said yes, yet also said many times , I was unusual.

> > > > >

> > > > > The test can leave one creamed, as it is evoking the most

> difficult

> > > > postures for CFS patients. I *think* my tinnitis, which

> escalated on

> > > > the trip, began the night of the test, but have not

discussed

> this

> > > > with him.

> > > > >

> > > > > I don't know all of the figures. But my supine reading

was

> > > > strong...like 8 Liters/min...this is the " Q " ...cardiac

> output. 7 and

> > > > up is normal.

> > > > > At 30 degrees, it dropped to 6.6. At 70 degrees, it was

5,

> and

> > > > sitting with feet down, it was 5.1.

> > > > >

> > > > > It also measured Stroke Volume (which is something

> different)

> > > > and " PEP " ...I forget what that is. They also changed. My

> heart rate

> > > > remained pretty steady, which I gathered was unusual.

> > > > >

> > > > > Dr. Cheney told me I am in Diastolic Heart Failure which

> was

> > > > confirmed by the Echo. It showed " prolonged IVRT and

reversed

> E/A

> > > > mitral flow ratio as well as reversed tissue Doppler (TDI)

> e/a

> > > > ratio. " (Something was supposed to be up 50%, but it is

down

> 50%)

> > > > >

> > > > > I was also having Angina or " Angina-like " pain.

> > > > > He said I am in danger of having a fatal heart attack.

> > > > >

> > > > > Yet, was very positive that things can be done to pull me

> out of

> > > > this.

> > > > >

> > > > > He says I am in a 10% of patients he is calling the " bull-

> whipped

> > > > patient " . We are disabled, but forcing Q with FLORINEF,

> Electrolytes,

> > > > even smoking, masking the Heart Failure. Like, functioning

> > > > on " speed " , or adrenaline.

> > > > >

> > > > > This compensation and masking are then causing " Ischemic

> > > > Reperfusion Injury " ...blood rushing through tissue, causing

> injury to

> > > > every cell in body...can cause " distant organ injury

> including the

> > > > central nervous system. " ( My search of IR

> interesting...alot is

> > > > written in " Cyronics " papers, because IR is a big issue

there

> and

> > > > they would certainly want to preserve tissue health)

> > > > >

> > > > > He says that IR is damaging and disabling me more than

the

> Heart

> > > > Failure and more than those with lower Q. (This may be the

> part where

> > > > patients who are bedridden with low Q are protecting heart

> and

> > > > cells.)

> > > > >

> > > > > I was primarily bedridden for 4-5 years until I went on

> Florinef in

> > > > 95. I could stand and hold a conversation.

> > > > > He says , of this 10%.. " you will kill for Florinef! "

> > > > >

> > > > > This all fits me in that I can still be " up " more than

> many,but

> > > > feel increasing damage and pain by doing so. And still try

to

> get my

> > > > feet up when sitting and not ever stand still. I feel utter

> and

> > > > increasing misery otherwise.

> > > > >

> > > > > I have tremor, Dystonia, left side weakness, and a bunch

> more. I

> > > > feel like my neurons are dying, and basicly, he said, they

> are. He

> > > > said left side may be nerve damage issue, not technically

> weakness.

> > > > (This fits the experience).

> > > > >

> > > > > I have " 18 issues " he is working on.

> > > > >

> > > > > Dr. Cheney said his patients are more disabled than those

> in

> > > > Peckerman study. This may be connected to fact that

Natleson

> patients

> > > > are required and able to come off of all medication and

> supplements

> > > > to be in his studies. Dr. Cheney's could not do that.

> > > > >

> > > > > He said of his (C's) about 30 patients tested:

> > > > >

> > > > > 10% working, but low Q

> > > > >

> > > > > 80% disabled, low Q

> > > > >

> > > > > 10% disabled, " bull-whipped, low Q

> > > > >

> > > > > All are in Heart Failure.

> > > > >

> > > > > He said HF in CFS is causing " maldistributing of low

blood

> volume " .

> > > > That many symptoms and damage are this erratic movement of

> fluid.

> > > > Even my Tinnitis, for instance.

> > > > >

> > > > > I also had Melanoma in 95, which he says is the highest

> incident of

> > > > Cancer in CFS! (My Oncologist also told me it is one of few

> with

> > > > connection to Immune System.)

> > > > >

> > > > > Dr. Cheney has not ruled out virus as cause, but is not

> chasing

> > > > bugs at the moment. But addressing the " terrain " . And

looking

> for

> > > > an " organizing principle " that would account for multiple

> symptoms.

> > > > >

> > > > > He also still believes there may be Mitochondrial

> Dysfunction...low

> > > > energy in cells...in the heart and maybe the brain.

> > > > >

> > > > > Now, we embark on addressing all of the 18 issues. With

> Heart

> > > > Failure and IR at the top.

> > > > >

> > > > > Hawthorne is crucial for HF and other good stuff. And

> Magnesium, in

> > > > every form.

> > > > >

> > > > > Buluoke is good for IR and eating up Fibrogen.

> > > > >

> > > > > COq10 for Microcirculation, to improve several symptoms.

> > > > >

> > > > > I think poor Microcirculation may account for reactions

to

> > > > chemicals and thermostat problems?

> > > > >

> > > > > He put me on Diamox, which is given for Congestive Heart

> Failure

> > > > and...Altitude Sickness!

> > > > >

> > > > > That's all I have for now.

> > > > >

> > > > > Bon Appetit!

> > > > >

> > > > > Katrina

> > > >

> > > >

> > > >

> > > >

> > > > This list is intended for patients to share personal

> experiences with

> > each other, not to give medical advice. If you are interested in

> any

> > treatment discussed here, please consult your doctor.

> > > >

> > > >

> > > >

> > > >

> > ------------------------------------------------------------------

--

> --------

> > --

> > > >

[Guest guest]

This is so interesting. And I thought I was the only one!I've had to

keep my legs up for a couple of decades. The only restaurants I could

eat in for a long time were ones where I could sit on the floor

crosslegged - there was a Thai and an Indian restaurant that

I used to make it to once in a blue moon. I went to a meeting

of CFIDS people once, and every one had their feet up or were

sitting on the floor. After I had my mercury removed from my teeth

(after three doctors told me I must) my legs became very sensitive to

the cold. It is now to the point that I wear heavy thermals under my

sweats in the winter (in Calif - I couldn't survive in a colder place)

and if I go out I wear the thermals under baggy jeans. Hardly go

out during the coldest winter months. Supporting my adrenals helped

tremendously in terms of being able to sit at all. I went to the

movies once in about 18 years, and then I was just about lying down in

my seat. Couldn't wait to leave.

So most of my life revolves around keeping my feet up. Don't seem

to need to massage muscles.

Michele G

> > It may be because there are more muscles in the legs than the

> >feet. Since theres more blood flow to them you might notice

> >circulatory flow problems there first.

>

> This is an excellent explanation. My legs and feet are cold much

> of the time & both turn reddish purple if not elevated, but only the

> calves of my legs are in pain, so your explanation helps to clarify

> that.

>

> > Did the doctor say you have acrocyanosis? This is from a paper on

> >low blood flows in the lower legs of CFS

>

> No, he has offered no explanation. I have even brought it up since

> then, but he seems to have no ideas about it. I will read more about

> acrocyanosis. I will check it out on your site. Thanks again.

>

> When I wake up in the morning, my legs, and muscles in general,

> usually feel and look OK. But as soon as I just walk to the bathroom

> and back, the calves begin to hurt. That pain escalates rapidly with

> any few steps I take during the day. So, I have to have lots of rest

> time. I have a rolling " architects " chair in the kitchen with a foot

> rest. And I have a stool in the shower and one in front of the basin

> in the bathroom because, yes, standing causes more pain than walking.

>

> Also, like others on the list, if my legs dangle, that makes it

> worse. When I got my wheelchair, the man who brought it told me that

> the backs of the thighs cannot be pressing on the seat or the

> pressure interferes with blood flow. He adjusted each foot rest so

> that my knees were slightly above the seat. Also, as others have

> said, having the legs up - on a dashboard or desk - higher than the

> heart helps the most with relieving the pain. But, any muscles I'm

> using - when cooking or cleaning the kitchen, using arm and shoulder

> muscles - they too become sore very quickly. Then it takes hours of

> rest to recover. That's why I think that Dr. Cheney's explanation of

> the microcirculation system being affected by the cardiac issues

> applies here and as he said that also affects digestion and other

> systems.

>

> Sandy

> > " These patients often display acrocyanosis – mottled looking blue

> and pink skin in the lower extremities. The mottled appearance is due

> to reduced peripheral blood flows and the skin is generally cool to

> the touch. They also often exhibit pallor.'

> >

> > You can find out more by checking out the low blood volume section

> of

> > http://www.phoenix-cfs.org/Orthostatic%20Intolerance%20in%20CFS%20-%

> 20Types.htm

>